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Thoughts From The In-Between

(Fair warning: This post will be all over the place because my mind is experiencing zero G’s and I don’t have much control over it.)

I’ve sat down to write this post a half dozen times over the last three days but every word I type feels disingenuous. They aren’t wrong and the topics really interest me, I’m sure I’ll go back to them later, but they don’t feel honest. They don’t represent my current mindset. Every word feels forced, like I’m trying to put a child sizes mask over my abnormally large head. Try as I might, it just wouldn’t slide into place so I gave up on every attempt but this one…Apparently.

Now that fits my mood perfectly! Giving up is an apt description because all I want to do is curl up under the covers and wait for this to be over. I don’t know what ‘this’ is but when it ends I’ll know. Maybe. Possibly. There’s a chance I’ll never know what it is and I’ll stay under the covers forever. Waiting in perpetuity for a sign, a whisper, or an inkling.

A bit dramatic? My answer is a tired sigh. 

The thing is, each word that flows across my screen is accompanied by one question: What’s the point? Every time I get up to do something there’s that one question: What’s the point? This one question is on a loop. Judging, nagging, begging for an answer but the answer is the question whispered back. What’s the point?

I don’t think there’s an answer for such an abstruse question but still, I ask. What’s the point? It’s a very sincere, all be it ambiguous, question about life, my life. Actions and reactions. Motivations or the lack thereof. I can’t help but wonder what the point of this, all of this, is? But looking for the answer feels pointless too.

I am so overwhelmed, and my usual pressure valves have been put on lockdown. I’m a creature of habits and rituals that crosses the border into OCD. That’s a clinical diagnosis, not a colloquial appropriation. Without these, let’s call them quirks, I feel like I’ve been put into a giant washing machine and someone’s turned it onto the highest setting. I don’t know which way is up or down. I’m drowning. I can’t breathe. There’s nothing to hold on to, and I can’t get my head above water.

My routines keep me balanced, and they help me feel just a little safer. Safe…It’s not a feeling I’m all that familiar with and I doubt I’ll ever get to fully appreciate everything it has to offer. My relationship with this sense of safety is, at best, a passing acquaintance. We say hello from time to time. Have a casual conversation about the weather and then we part ways. It’s amicable and civil, but we never break the surface or develop a deeper bond.

I was diagnosed with a chronic illness, kidney disease, when I was three years old so my whole life has been a game of hopscotch that I play with disaster. Jumping from one crisis to the next. If, by mistake or miracle, I land on a space between then it’s a moment to catch my breath, prepare for the next jump, but get comfortable? No, getting comfortable in the in-between has been a proven mistake. A mistake I’ve made two or three times and the let down is immense. I don’t think I have the heart for one more break. 

But here I am, back in the in-between, and I’m waiting for something to happen. Praying it doesn’t but, I don’t know if I truly trust that the prayer will reach its mark. If it does? Do I really want to know the answer? In my experience, the answer isn’t always what I’d hoped for and, sometimes, I regret asking. Still, I pray because there’s nothing else I can do right now. Today, my prayer is for…Prayer isn’t like a birthday candle, is it? If I tell you what I wish for, it won’t change the outcome, right?

What the hell! Let’s risk it. 

I’m praying for safety and stability. I crave it with such an intensity that it creeps towards desperation. It’s the one thing I want, but it’s the one thing I’ve never felt. I’ll never, ever, feel safe or secure because I can’t escape my body or my life. I’ve felt loved. I’ve felt protected by my loved ones. Safe? Secure? Not when my body hates me so much. But, God I wish…

No matter how much my heart lusts after more, my relationship with safety has always been, will always be, a passing affair. I know this is the way it has to be and I would love to make peace with it, but I can’t let it go. My routines, rituals, and quirks give me the sense of safety that I need to get up and do something with my day. They offset the panic by creating an illusion that’s pretty convincing and it gets the job done, most days. But that illusion is easily shattered by the smallest of things. A phone call, a knock on the door, a dinner invitation or a global pandemic.

Okay, that last one is about as big as it gets and it’s throwing the whole world off our axes. How do any of us feel safe right now? How do we keep living when life has been brought to a halt? How do we get out of bed when it feels so pointless? Or maybe that’s just me and I’m projecting my current mood on to you. My bad.

There are a few precious souls who are living in a very happy land of denial. They seem quite content thinking that this situation is being blown out of proportion or, more interestingly, it’s a government conspiracy. Some of those theories are really something and it would be tempting to go down that rabbit hole for just a few hours. Then again, I’m too much of a realist to fall too far down but wouldn’t it be nice to live in their world for a little while? A break from the realities we’re living in? 

I don’t know about you but I’m so tired, anxious, and overwhelmed. My routines, rituals, have been upended. I can’t leave my house. My immune system doesn’t work so walking out my front door is a big risk. The things I do, like going to the grocery store on a Friday at two pm? I can’t risk it, and it’s just one of many risks I can’t take right now.

My one connection with safety has been taken away, and I don’t know what to do to get some sense of it back. I feel lost in a whirling machine, and I don’t have the power to flip the switch. I’m trying to create new routines to fit this new reality, but they aren’t working and feel like shutting down completely. Which leads me back to my original question: What’s the point? Why get out of bed? Why have a shower? Why make breakfast? Why try to write a blog? Why try to do any of it when all of it seems so pointless?

Nothing I do will help the situation. These words won’t make anything better. They don’t help me, you, or any of us get back to normal. Normal…My normal wasn’t all the great but at least it was familiar and there’s safety in that familiarity. What I wouldn’t give to feel safe for more than a few minutes in the in-between. If only the in-between could take up some more space. If only…

There I go strolling down into a black hole. If only, the if-only’s would only lead to something pretty, shiny, and sparkly. Ah but it’s a trap, a lie, an illusion that’s easier to see through than my upended routines. The if-only’s aren’t as comfortable as the in-between’s. They feel more desperate, cold, and lonely. Their end is sadder than the end of the in-between’s because at least there, in the space between, the ground is more solid and it feels more real. Fleeting, yes, but I’ll take that over the shapeless stream of the if-only’s.

I’m rambling. I’m filling the space. I’ll post this because it’s a part of my routine and at least I’ll have accomplished something today. Small, trivial, insignificant in the grand scheme of things but something is better than nothing. At least this post is an honest representation of my mind right now.

Chaotic. Fractured. Desperate. Empty. Lonely. Tired.

To ask the question one more time: What’s the point? Sometimes the point is in the pointlessness. It’s connecting to someone else who’s feeling just as aimless. Sometimes the point is simply saying, “I’m not okay right now.” I’m holding on. I’m waiting this out. I’m doing my best, but I’m not okay. My routine, my rituals, my quirks have been taken away, and I’m feeling lost.

Maybe the point is simply asking, “How are you holding up?” 

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Yellow Polka Dotted Submarine

“It’s really a wonder that I haven’t dropped all my ideals, because they seem so absurd and impossible to carry out. Yet I keep them, because in spite of everything, I still believe that people are really good at heart.” ― Anne Frank, The Diary of a Young Girl

Does anyone else feel like we woke up in a movie written by someone on a really bad LSD trip? Not the cute little trip with yellow submarines or one-eyed purple monsters in polka-dotted bikinis. Did I mix those up? The songs my parents thought were groovy were weird but at least the colours were chipper. There was a fair amount of jazz hands and those tap shoes always added a nice flare. Everyone looked happy or maybe they were just high. It’s kinda hard to tell, but the illusion’s pretty nifty.

This trip we’re on is straight out of a nightmare high and whoever’s putting pen to paper needs to sober up fast. Splash cold water on their face. Poke them with a fire hot javelin because, you know, six-foot rule. Make the pen fall, so we can end this madness and get back to our regularly scheduled programming.

Is anyone else feeling an overwhelming exhaustion? My bones are tired. I think my cells are taking power naps whenever they think I’m not paying attention. My head throbs and my chest feels like there’s a storm cloud swirling right under my sternum. There’s lightning and thunder. Grey clouds are threatening rain. It’s a tornado of anxiety and worry that won’t blow over.

I feel on edge and ready to run, but there’s nowhere to go because there’s no safe place right now. There’s a monster out there but just like the one under my bed, no one can see it. I feel it. I hear it. Mom, can you come and take a look? Nope, it’s all clear but no amount of reassurance will calm me down. This damn nightmare is shared by millions of people, all over the world. What the actual expletive is going on?

This is one hell of a way to bring the world together! Sure, it’s a bit of a culture shock but at least we’re in this together. Right? Isn’t that a song or something? I don’t know. I’ve never done anything harder than morphine and then watched Disneys Fantasia. Really freaked me out, man! Seriously scared for life.

Where was I going with that? No idea. Redirecting…Now.

Over the course of our history, there are only a few times when we’ve been united in a common struggle. Usually, we’re struggling against each other like a giant game tug of war. Sure, I guess wars do bring us together in mind-bending ways. Ways, such as a global pandemic? 

I’ve heard people compare this virus to a battlefront which, okay, I guess it’s one way to look at it. We are fighting a mighty enemy, but wars are fought by action and we’re being called to inaction. The best thing we can do, if we’re able too, is to stay at home and wait for this bastard to run out of steam. That means, we’re united in our inability to wage a war on what’s threatening our way of life. All we can do is…Sit. Stay. Wait.

I’m not very good at any of those things. Sitting, waiting, staying? I feel like a ball and chain has been shackled around my ankles. I feel a burning need to do something to help, something to make this better, but there’s nothing I can do. For whatever it’s worth, the only skill I have are the words I put to paper. I believe that words have power but in times like these? What good are the words I write when my family members are helping patients in hospitals and clinics? What good will they do when someone I love gets infected or someone I love, God forbid, doesn’t recover? What good are empty words when the world is brought to a halt by a tiny virus with a mighty right hook? I have no words for this situation!

I guess I do have a couple of words, but I’m trying to keep this PG.

They say, in times of crisis, we respond in one of three ways: fight, flight, or freeze. I back away if possible but I can’t get away from this situation. If I can’t run, I’m ready to fight because I’ll be damned if I’ll go down quietly. Except, I don’t know how to fight this enemy. There have been moments when I’ve frozen but that’s because I’m a planner. I take my time to analyze the situation and formulate a response. I’ve looked at this situation from every angle but the only answer I can see? Listen to the experts, then trust these strangers with my life and the lives of the people I love.

Well, f**k me!

I’m stuck in a moment of suspended animation with no way to save myself, my loved ones, or you. It’s…Frustrating and infuriating.

Anger, resentment, grief, and this overwhelming helplessness swirl around and around inside of me. They move so fast they’ve created their own jet stream. Faster, faster, faster it goes and then comes the lightning, followed by the thunder. It will bring the rain and maybe then I’ll feel cleansed for a little while but without an end in sight?

“It’s really a wonder that I haven’t dropped all my ideals, because they seem so absurd and impossible to carry out.” Anne Frank, so wise for someone so young, makes such an astute observation. She was locked away, hiding to save her life, and still, she looked for the good. That’s so amazing, but it’s a quality we admire, isn’t it?

As a society, we value kindness, compassion, thoughtfulness, and decency. We cheer on the brave, the strong, and the selfless who show up to work even though they are walking into the line of fire. We honor those whose selflessness has gone above the call of duty. These people, who exemplify our ideals as a society, are heroes and should be treated with the utmost respect.

In times of peace, these ideals are held to be true and fiercely protected. We teach them to our children. We scold those who stray away. We hold them close to our hearts and offer them up as gifts to those we love. They are precious treasures but they shouldn’t be locked in a vault. They are to be shared, enjoyed, and cherished.

But in times like these, we so easily abandon our ideals and justify our actions. We claim it’s survival of the fittest but in reality, we’re so afraid, too exhausted, and some are so easily consumed by greed. Hoarding food, cleaning supplies, and toilet paper. Yelling at the person restocking the shelves, checking us out at the counter, or trying to give us the medical care we need with dwindling resources. Reselling medical masks, hand sanitizer, and household cleaners for three, four, five times their value.

What happened to our ideals and our values? When did they become absurd and impossible to carry out? How did we so easily let go of what we hold dear and reach for a poor substitute? Why do we turn primal after claiming we’ve evolved past the sins of our ancestors?

We look for an enemy we can fight because the real enemy is too small to see and too monstrous to battle. Fear brings out a bigotry that’s been simmering below the surface for God knows how long. Six months ago, how many people would’ve said they’re not racist? How many have discovered the truth about themselves? How many will even acknowledge the reality of their newfound hatred?

The things we value as individuals and as a society speak to our character. The choices we make now represent those values and history will judge our character accordingly. Then again, who’s worried about the future when we’re stuck in the present?

A lesson from the past then? The choices we make now aren’t new. The world may have changed drastically in the last few weeks, months, but who we are hasn’t. The decisions we make are the same as they were before but now they are tainted by fear, helplessness, frustration, and exhaustion. It’s not who we are when we’re standing strong; It’s who we are when we’re struggling to stand at all. That’s the measure of a person and a society.

When it comes to our values, our ideals, we’re faced with the same choices we had six months ago. Do we value money or people? Love or hate? War or peace? Equality for all or just a select few? The things we hold true during times of peace have to hold true at times like these. If they don’t? If we abandon them now? If they seem absurd and impossible to carry out?

Well, did we really hold these values to be true or were they nothing more than a utopian wasteland?

I’m afraid… No, correction, I’m terrified! I’m on the verge of tears even though I’ve cried a river all ready. I want to fight, scream, run, and hide all at the same time. I want to go back to a time when this wasn’t our reality and live in blissful ignorance. I want to skip ahead to a time when this is over and we’re back to living our lives, our own way. I want to punch a wall and throw a fit. I want to give in and give up, but I can’t do that because I made my choice.

My choice, as hard as it can be, is to hold on to my values and my ideals. As preposterous as they seem in times like this. As simple and childish as they may be, given our situation. As hard, absurd, and impossible as it may get? I want to hold on because letting go dissolves my faith, erodes my hope, and corrodes away my sense of self-worth. 

Without these ideals, I will be left with shame, guilt, and an emptiness I don’t know how to refill. Letting go of who I am, who I strive to be, turns me into the monster of that low-budget movie, written by some hack on a bad trip. No, I’m not striving to be the leading lady or anything so preposterous. I’m trying to hold on to my sanity, my principles, and my faith in humanity.

For the next five minutes, forget that news and the politicians. They all have agendas and it’s impossible to wade through that sludge. Instead, look around your little corner of the world and tell me the good that you see right now. Me? I see neighbours bringing food to those who can’t leave their homes. I see a two-year-old, standing on a deck, laughing with a friend on the deck next door. I see people applauding frontline workers as they go to work and as they finish their shift. I see kindness, generosity, bravery, and love. I see new friendships blossoming and long time friends bloom.

I see the helpers stepping up to do what they can because, despite the worst of us, the best still shine a hell of a lot brighter. There is still hope. There is still goodness out there. There’s still something to hold on to so don’t give up on the good.

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I’m Fine…Thanks For Asking

Someone asks me how I’m doing, and I say, “I’m fine.” It’s a normal response to a typical question. Nothing fancy or verbose. It’s not an epic soliloquy. We aren’t meticulously detailing every second of a day that’s been pretty basic. Not a great day but not a bad one either. It was just, you know, fine I guess. 

They look at us, their overly groomed eyebrows arch, and a smirk tugs at the corners of their mouth. They take a deep breath and ask, “You know what ‘fine’ really means don’t you?”

Here we go. They’re going to say it. They’re going to take a simple statement and turn it into a thing. A two-word sentence and a four-letter word. My response was a simple reflex, not a covert operation. I’m not fishing for psychoanalysis or asking to be probed by aliens. I’m simply stating a fact but they can’t leave it at that, can they?

“F**ked up, insecure, neurotic, and emotional.”

There it is. They said it! 

I was fine a minute ago but now I’m mildly annoyed. It’s inching its way to moderately put out. Maybe they’ll leave it there? I can play it off with a chuckle, a wink, or a good old fashion, “You so funny.” That’ll work, right?

Nope. Not a chance. They’re going to push it. It’s in their eyes. That look. The sneer. All-knowing and a little too smug. They’re expecting me to crack open like a can and spill the beans. Jokes on you! This can is a joke toy filled with springy snakes.

I have moments when I’m overly emotional and sometimes those moments are irrational. I cry every time those kittens play with toilet paper in that commercial because they’re just so squishy. I burnt the last slice of bread and had a small meltdown. Can anyone say first world problem? Yeah, I’m a little overwhelmed right now. 

My neurosis are floating around in my cranium like a wave crashing into a tidal pool. My brain is a barrel full of monkeys on a good day and raging baboons on a bad day. I’ve got a handful of insecurities, and they trip me up more often than I care to admit. Am I f**ked up? Yes. I have my moments but don’t we all?

This moment? I think I’m actually, fine. Like the old-timey kinda fine. Way back in the good old days when fine meant fine. Before acronyms became a fad. When words were clearly defined by a dictionary, not some smart fart with an attitude. Now we’re duct-taping words onto other words, and we need to be a codebreaker to figure them out. It’s madness I tell you. Madness!

I miss the good ole’ days. 

Did I just age myself by thirty years? No, wait, I don’t answer that.

I’m guilty of saying that I’m fine when I was keeping my life together with supplies I salvaged from a recycling depot. Barely managing to function like a human being who, clearly, was nowhere near okay. I’m not alone. We all do it. The words come out of our mouths faster than a superhero changes clothes in a phone booth.

I’ve been laying on a gurney in an emergency room, hooked up to an IV, and beeping monitors. The doctor asks how I’m doing and I say those two words. I feel and look like death but I say that I’m okay, all right, fine, just peachy Doc. How are you? Having a good day? Looks busy out there.

What? No! No shut up. Shut up. Shut up! What am I saying? Why am I saying it? Stop talking woman. Clearly I’m not okay. That’s why I’m here. What is wrong with me?

Again, don’t answer that.

If there’s a time and place to be completely honest, it’s in a hospital or a doctors office or when paramedics arrive. Stoicism, while it has its moments, can take a coffee break. Honesty may not all ways be the best policy, go on comment down below, but when machines are beeping and tubes are going into places? Yes, honesty should take centre stage. 

Being, what was it, f**ked up, insecure, neurotic, and emotional is a perfectly acceptable response to pain, suffering, and possible death. Wow, hello darkness. It’s okay to say I’m not fine. It’s the reason I was there in the first place! I don’t go to emergency rooms for a cocktail and some girl talk. Clearly I’m not okay but these words come out of my mouth and they’re just plain goofy.

I know I’m not fine.

Nurses know I’m not fine.

The person washing the floors knows I’m not fine.

The doctor knows I’m not fine. That’s why they went to school for many, many, many, years. They’re trained to tell when someone is not fine. I’m not fooling them or anyone for that matter. They have eyes. Clearly fine is on a vacation in Maui.

But the second they ask how I’m doing? It’s as if what ails me suddenly vanishes and in a snap, my body is functioning at maximum efficiency. The fever, chills, body aches, and nausea freeze in place. Why? I don’t know.

Is it a miracle? Probably not. Maybe it’s a startle response? Don’t move! I think they’re on to us. Everyone be quiet. Did she say it? She said it! Do you think they bought it?

No dumb ass! They’re clearly very smart people with basic deductive reasoning skills. Did that stop me from saying it? No! As the words are coming out of my mouth, I’m thinking, “What the hell woman?” In my mind I’m yelling at myself: Don’t say it. Don’t say it. Why’d you say it?

It’s a lie. Not a very good lie. It’s like I’m three years old and I’m trying to convince my mom I didn’t steal the chocolate cake that was just sitting on the counter. What’s that on my face? Nothing. Why’d you ask?

The better question is: Who leaves a slice of cake unattended anyway? You’re asking for trouble. Not trying to blame the victim but…

Sorry, where was I?

I’m Fine. Liar!

Peachy? Your pants are on fire!

Groovy? Nifty? Right as rain?

Oh for shame you horrible little liar!

Maybe I don’t want to be a bother? Well, okay sure there’s that but if I’m in a hospital we’re a little past bothersome. Having a chronic illness has led to countless hours in those blasted walls and I’ve developed a very deep resentment towards hospitals. Are there people that actually like hospitals? If it’s your happy place, then do you! Me? I don’t want to be within a three-block radius. I think I’m allergic, but what do I know? 

If I’m there, I’m there for a pretty good reason and I probably should’ve gone in sooner. I’ve probably put it off until my body is about to shut down completely because hospitals suck. Logically, being a bother can’t be the reason why I say what I said because I’m too sick to bother anyone. How’s that for deductive reasoning skills?

If I say I’m fine then maybe I’ll actually be fine? Say it with enough conviction and voila it becomes reality. Yeah, because that’s how life works. Delusions of good health and good times. Close my eyes real tight. Tighter. Tighter. Now hold my breath, stamp my feet, and spin in circles really fast.

Did it work? No? Shocker. Saying I’m fine didn’t make it happen? Well, now what? I plum out of ideas.

I guess the good news is I’m not lying to everyone around me. Bad news is I’m lying to myself. Damn, that’s a downer. Sure, I can be pretty convincing when I need to be but, no, it’s not working. The machines still beep. The IV still sticks out of my arm. The gurney still does a number on my back. The doctors are looking at me like I just grew a second head.

Maybe admitting that I’m not okay is a sign of weakness and that brings an uncomfortable amount of vulnerability? As if being in a weakened state is a reflection of who I am at my very core. Being sick is a moral failing? A punishment for something I did, thought, felt at some point in my journey across this mortal coil. 

Say it out loud and it sounds silly. 

I hate being, feeling, vulnerable. Does anyone like it? I’ve never met anyone who likes being vulnerable. Being sick is, for me, the height of vulnerability. Being completely dependant on someone else for not only survival but basic day to day needs. Having to be fed, bathed, and helped out of bed. 

Literally and figuratively being exposed feels so helpless. At times, hopeless. Dependant. Vulnerable. Needy. Saying I’m fine is a way to take some of that power back even if it is a lie. Even if it doesn’t change the reality of that moment, it keeps me from falling apart.

But it’s not real. It’s not helpful. It changes nothing. Being honest, allowing myself to be vulnerable, is the only way I’m going to get to the other side. 

I’m trying to say it a little less often, be more honest with myself, but I feel it sitting in the back of my throat. Stretching its hamstrings. Bouncing up and down. Limbering up for the hundred-meter sprint. It’s got a collection of medals but there’s one spot that’s just itching for another gold. 

The words want to come up, and I’ve gotta shove them back down with brute force and a toilet plunger. It’s okay to not be okay for a while. It’s fine if that word matches the letters of some acronym. Admitting it is uncomfortable but it doesn’t make us weak. We’re not a bother, and it’s not going to make our situation any less real. We are where we are, and it okay to put it into words or just cry because we burnt the toast.

Then again, sometimes fine means I’m not ready to talk about it yet. It can mean I need time to process or maybe I need to find the right person to talk too. It’s a way of politely saying: Don’t make a thing out of something until I’m ready for that thing to be a thing. You know what I mean?

Oh and sometimes fine means, well, fine. Not good, not bad, but overall I’m doing well. The English language is so bizarre am I right? If you’re trying to learn, you have my utmost sympathy.

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The Indescribable Power of Gratitude

“We can complain because rose bushes have thorns, or rejoice because thorns have roses.”  ― Alphonse Karr, A Tour Round My Garden

I don’t know about you, but I’m feeling overwhelmed right now. There’s one topic on everyone’s mind and on everyone’s lips. Facebook, Twitter, Pinterest…I didn’t know there were that many ways to decorate a fallout shelter. I’m impressed with your creativity, but I’m also exhausted. My brain can’t process any more information or see one more headline.

It’s all too much!

This weekend, I shut it all down and swore to myself that I wouldn’t look at social media, news headlines, or email. It was time for a break so I watched movies, baked bagels, and washed my walls because I was that bored. I promised myself I wouldn’t look online for two whole days. I lasted two whole hours but then I shut it down again and went to find more distractions. It was an exercise in rinse and repeat, but I managed to shut it off more than I turned it on but, oh boy, the struggle is real. 

My problem is, we’re only seeing the bad news, the worst of humanity, and the despair brought by this invisible monster. Bad news sells, and good news gets drowned out by the falling pennies. There is a lot of bad right now! I see it and feel it just like you do. I have family working in the medical field, and I’m desperately worried about each of them. I’m worried about all front line workers from the medical field to the grocery stores. I’m worried about the people who are sick, and their loved ones who must feel so powerless and terrified. 

I’m worried, anxious, and I can’t see the roses through the thorns because those prickly bastards are everywhere.

But there is good out there right now and there are things to be grateful for even in this dark hour. I know, they seem hard to find. I’ve be struggling to see them too. Then again, maybe I’m not really looking. The good, the wondrous, the miraculous is all around us if we take a break from the bad. Not ignore it or stick our heads in the sand and pretend nothings going on because, clearly, a lot is going on. A break, a time out, to breathe and look for something to relieve the pressure.

You notice that I’ve been dancing around the name of this thing invading our lives? It’s not V-V-Voldemort. Saying its name won’t make it appear or make it disappear. Stand in front of a mirror, say it three times, and turn off the light. What happened? Yeah, nothing because it’s just a name. A name that represents something really bad and I’m desperately trying to focus on the good.

Something good. Something good…Something…Oh! I know!

I’ve spent the last two weeks in quarantine because I came in direct contact with the thing that shall not be named. The symptoms lined up and precautions had to be taken. Two weeks, alone, in my tiny apartment with my dog, cat, and thoughts. *Shiver* But yesterday my doctor called and my test finely past through the backlog. Good news! I don’t have, you know what, so I’m free to socially distance myself rather than completely isolate. I did have a viral lung infection just not…You know.

Kissing my doctor on the mouth would’ve been inappropriate. He’s a married man, after all, and a professional. Perish the thought! I had the thought so thankfully it was a phone call, and I have decent self-control. However, the relief might’ve made me lose my mind, but I maintained my dignity. I failed the test which shouldn’t come as a surprise. I’ve always been bad at tests but this in one test I’m so grateful to fail with flying colours.

What else? Kindness! The kindness I’ve received these last few weeks has been so overwhelming. The messages of support. The offers to help in any way. Prayers, well wishes, and thoughtful acts mean the world to me. When I said I missed hiking, I received an email with pictures of the woods and my smile just won’t go away.

In Canada, some people coined the term, ”Care-mongering” to combat the rise in anxiety and the fear-mongering. A group of people got together to find ways to help the most vulnerable and isolated people in their communities. Making sure they have what they need to get through this crisis and find unique ways to lessen the loneliness. It’s a campaign that’s taken off and brought the best out of people across the country. 

The world is coming together to help the most affected. Doctors in China, after months of fighting for their own people, are leaving their homes to help their colleagues in Italy and Spain. Can you imagine how tired they must be after all they went through? Still, they’re going to share their knowledge and skill with those whose fight is just getting started.

The courage, strength, and generosity! Politics be damned, racial divides can suck it, we’re one world and when the world is in danger the best of us step up to help. That is truly the most remarkable thing I’ve seen. What a joyous thing to see strangers helping strangers. Strangers becoming allies, friends, and family. For all our differences, we’re all on this journey together and maybe now we can take this opportunity really appreciate what that means.

Is that recklessly optimistic?

Through all of this, the humour that’s been found in the darkest of places is a beautiful thing. Meme’s, Gifs, one-liners that are so funny I’ve choke on my tears. I think my favourite was, “When you realize quarintine is another word for your normal life.” Uh, true dat! True what? I’m never saying that again. I appoligize profusely!

Laughter has saved my life before and it will save it now. As long as we’re laughing, we know we’re alive so keep the jokes coming and I’ll be grateful for every chuckle.

Finding things to be grateful for is challenging and maybe it seems impossible. Maybe the attempt feels futile? I have these moments when I feel like gratitude is almost sacrilegious or disrespectful. People are sick, so many have died, even more are about to die. Frontline workers are reaching their breaking point. What about them? 

Perhaps thanking them is more important than ever? In Vancouver, at sunset, people stand on their balconies and cheer for our health care workers. Car horns blare. A chorus of: Thank you! Thank you! Thank you for all that you do. Yes! Thank you, where ever you are in the world, we’re so grateful for each of you. 

Gratitude, in times like these, gives us all a little more strength to carry on when we’ve reached our limit. It helps us stand when all we want to do is curl up and cry. It’s an act of love in a time when it seems like love is a luxury we can’t afford. It parts the thorns long enough for us to see, feel, and smell the roses.

It’s hard, at times like these, to find things to be thankful for so if you have something I missed? Leave it down in the comments. It’s a small thing but smalls things can lead to a big hope for those of us struggling. Thank-you for your time, and your kindness. 

For reliable, up to date, information about our current situation please check out these sites:

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The Power of Loneliness

I’m an introvert with moderate, sometimes severe, social anxiety. The idea of social isolation is as intriguing and alluring as a pot of gold at the end of a rainbow. Stay away from people? Don’t go to social gatherings? Stay home, behind closed doors, and not see another human being for at least two weeks? Screw Christmas! This is the happiest day of the year.

Then I came in direct contact with a global pandemic and developed symptoms. Right, well, I’ll stay home because I’m not a selfish jerk. I don’t want anyone else to get sick. Besides, we’ve all gotta do our part to flatten the curve. I might survive this but you might not. Caring for each other is the cornerstone of civility and basic human decency.

All of which should go without saying but, it seems, some people need a gentle reminder.

Being immunocompromised puts me at a greater risk of infection and complications. Thankfully, my symptoms are slowly abating and I’m gradually feeling better. It looks like I’ve dodged a pretty scary bullet. Other people aren’t so lucky. I’m sure you’ve heard the stories coming out of China, Italy, Spain, and other hard-hit countries? God, help all those infected, those with the worst symptoms, and those trying to provide them with medical care.

It’s a scary thing to watch and, I don’t know about you, I’m feeling a bit helpless. 

If you aren’t taking this seriously, and I understand some of the reasons, please get your facts straight. Go to reputable sources like The World Health Organization (https://www.who.int/emergencies/diseases/novel-coronavirus-2019), the Center for Disease Control (https://www.cdc.gov/coronavirus/2019-nCoV/index.html), or the Public Health Agency (https://www.canada.ca/en/public-health.html). Look at the science and listen to the experts. Just because you aren’t sick, doesn’t mean you can’t carry it and you could give it to someone like me. Someone who could die from this virus. None of us want that on our consciences, and we don’t want to lose someone we love because of carelessness or thoughtlessness.

Okay, that’s the sermon over. Back to our regularlly scheduled post. 

I’ve spent the last eight days in quarantine and I think it’s starting to get to me. Believe me, no one is more surprised than me. Still, what I said in Monday’s blog is still true. When it comes to me being ill and this virus? I still feel a sense of calm and serenity. I’ve made peace with my woefully under-functioning immune system and the risks that come with it. That’s the life I’ve been given. I will always have a chronic illness, and that puts me at a greater risk of infection and death. 

I’ve made peace with my mortality and with that comes a certain degree of tranquility. I’ve faced death before and it was warm, welcoming. It wasn’t my time, and I was sent back but my time there, wherever there was, left an impression. It took away the fear that comes with the end of my life. It left me with questions and a genuine curiosity that’s oddly liberating. I guess it’s hard to fear what I seek to understand? 

No, I’m not actively seeking answers and all the wonders, and curiosities, of the hereafter can stay hidden for a while longer. However, when it is my time, I’ll go into that good night with a joyful heart because I don’t fear death. I embrace the answers and the wonders that come with the end because life? Now that’s some scary shit right there! Living, knowing that I’m going to die, is a lot easier than living without end.

Right now, halfway through quarantine, it feels like I’m living without end and it’s brought about an intense sense of loneliness. It’s shocking! Me, the introvert with major social anxiety, craving social engagement? I mean, wow! Plot twist. Whoever’s writing my story got me but good!

It’s not like I’m locked away in an isolation pod at the bottom of the ocean. I have a computer, a phone, and decent WiFi. I’ve been getting a lot of text messages, phone calls, and I’ve met some cool people online. I’m having interesting email conversations with some amazing people. We’ve never met in person but there’s a connection that’s fun to explore. Technology is an amazing thing, especially at times like these, but can it ever replace the connective strength of real-world interactions?

My dad came by to drop off some groceries for me today. He dropped them off, stood six feet away, and we had a short conversation. Seeing a real, in the flesh, human face almost made me cry. The contact was limited, necessarily so, and it only lasted a few minutes but it was like seeing a sunset for the first time. Wondrous. Magical. There is a pot of gold and a leprechaun at the end of the rainbow! 

Normally, I find human interactions baffling and draining but now my cells are reaching out for any connection they can get. A five-minute conversation, standing six feet apart, at my front door. Yelling down over the  balcony just to say hi to a familiar face. Anything to feel a connection for just one second.

Maybe this is why people are so resistant to the calls for social distancing. One woman likened it to marshal law and called it a threat to her freedoms. She would rather die than give up her freedom. It’s an extreme stance but maybe it speaks to the magnitude of our need for connection? We feel the threat as acutely as if we were staring down the business end of a weapon. When our needs are threatened, we behave in an extreme, often irrational, way and do things we’ll most surely regret later. 

I read an article on Harvard Health Blog (https://www.health.harvard.edu/blog/the-power-and-prevalence-of-loneliness-2017011310977) that said loneliness has the same risk to our health as smoking fifteen cigarettes in a day. It shortens our lives and puts our health at risk. Loneliness isn’t simply a psychological malady, though its mental toll is intense, there’s a physical price as well. Feeling lonely affects our body’s ability to function in a healthy way. It compromises our immune systems, increases our risk for vascular and cardiac disease, and can short our lives by about eight years.

A lonely heart can kill us? Really? Science is fascinating!

When I began my quarantine, eight days ago, I thought that I had the advantage. I thought that, finally, my social ineptitude would work in my favour and maybe it has? I’ve found ways to keep myself busy, motivated, and entertained. Baking is a stress reliever, and I’ve been playing around with some new recipes. Though, part of the fun is handing out the goodies, and I can’t do that right now. Bummer but on I must go and here I must be. It took seven days for the loneliness to kick in and with it a deep sadness, desperation, and longing. What I wouldn’t give for a ten minute face to face conversation? I’d love to sit in a coffee shop and people watch. Not a good idea right now but the desire is overwhelming.

My need for real-world interactions is surprising but I guess, even us loners need somebody, sometime.

Some of my more extroverted friends lasted a few hours of isolation before feeling the effects, so here’s a PSA: If you know a social butterfly, check on them and make sure they’re okay. I think they might be the ones we need to worry about the most.

I’m eight days in which means I’ve got, oh math isn’t a strength of mine…Six! I have six days of quarantine and then I graduate to social distancing. Sure that doesn’t sound like a big step up but oh boy am I looking forward to it!

Social distancing means I can leave my apartment and go for a hike. Oh, my heart is craving the great outdoors. I want to feel the air on my skin, the dirt under my boots, and hear the birds coming home for the season. I want to see someone’s face, keep a healthy distance, and say good morning, then hear their response. I get to be a part of the world even if it’s in a new and uncertain way. I get to connect with real, in the flesh people and just typing that made me tear up. Again, we’ll have to connect at a distance but seeing your face will be just about the sweetest thing in the world.

As for my health, I’m feeling a lot better. The pain in my chest is gone. I no longer feel my lungs expanding and deflating. I just walked for 30 minutes, inside my tiny apartment, and I only had to stop twice to catch my breath. That’s a massive improvement. I’m healing and I feel lucky. I’ve gotten off a lot easier than some and I’m grateful for your thoughts and prayers.

I’m grateful for those of you that reached out and made sure that I’m okay. I’m grateful that I have people in my life who will bring me groceries, stand six feet away, and let me see their beautiful faces for a few minutes. The phone calls, emails, texts, and Facebook messages have meant the world to me because you kept me from losing my mind. Finding out how loved you are, is a special thing and I’m grateful that I get to feel less alone.

We’re all feeling this pandemic in very different ways but it has an impact on all of us. Fear is normal, but we’re still in this together which means we aren’t alone. We might have to stay home or keep our distance but we can still connect and, at the very least, we can help each other combat the loneliness.

Please forgive me for saying this again but listen to the experts and not a meme posted online. I’ve added links because scientists around the world are working tirelessly. They’re looking for answers and making breakthroughs. Information is changing, it’s evolving, and the more we know the less helpless we feel. Well, the more I know the less helpless I feel.

Knowledge is power and it’s stronger than fear. Listen to the knowledgable, the credible scientists, and do what they ask. The sooner we do, the sooner this sci-fi movie can end and we can all leave a scathing review on Rotten Tomatoes. 

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Winnie The Pooh! We Need You!

“You’re braver than you believe, stronger than you seem and smarter than you think.” – Winnie the Pooh

Oh to be a three years old again! Sitting in a small theatre, watching a life-size Winnie the Pooh and Friends dance across a stage. It was the first musical theatre show I ever saw and I was in love with that yellow furred bear. The gentle kindness.Yep, I think that’s what I love the most. You read that right. I still love me some Winnie the Pooh because age doesn’t discriminate.

He made life so simple! Love your friends, honey, and be kind to everyone because kindness is the key to happiness. Which is something we all need to remember right now.

I’m writing this from quarantine while I wait for my test results. After coming into direct contract and developing symptoms of COVID-19, I self-isolated. It’ll take five days for the results, and I have one more day to go. Am I worried? Nervous? Freaked out? Uh, I should be a puddle of anxiety, stress, and fear but I’m feeling oddly calm.

What’s really strange? I’m normally an anxious person. I worry about everything! Big or small, my brain latches onto a problem and blows it up into an apocalyptic nightmare. That sound coming from the ceiling above my bed? Obviously it’s a murderer clawing his way through the drywall. The cooking instructions on the back of a frozen pizza box? If it’s wrong, I’m going to get food poisoning and die a horrendous death. Sure it’s only cheese, sauce, and bread but big pizza is a greedy corporation! Who knows what they’ll do next? They are outta control I tell ya. Outta control!

A virus that’s causing a global pandemic and shutting down entire countries? Nah, it’s all good. I’ll stay home, watch “the Youtube” and rest. I can’t do anything about it now so I’m not going to worry. Worry is a choice! I just rolled my eyes at myself. When did I become so even-tempered? Will wonders never cease.

I’m immunocompromised which puts me in the high-risk category of this outbreak. If this infection gets me, if it has gotten me, I could be in serious trouble. Healthy people will get mild cold-like symptoms, feel horrible for a few days, and recover. People like me? It’s like tossing a smoking cigarette on a dry leaf. All it takes is a light breeze and sparks go flying. Next thing we know, a thousand acres of land has been torched and it’ll take decades to recover.

I should be afraid, but I feel an odd sense of serenity. Accept the things I cannot change and this is something I can’t change. There’s a chance I’ve already been infected. Then again, there’s a chance I’m experiencing my annual run of bronchitis and the timing has been purely coincidental. Either way, all I can do is rest, drink plenty of fluids, and hope for the best.

That’s not to say fear isn’t a natural response. I know many of you are afraid right now. We’re facing an invisible enemy and a mighty foe. How can we fight something we can’t see? How do we simply trust the experts, scientists, and doctors who are looking for a cure or treatment? How do we relinquish that kind of control when our lives, the lives of our loved ones, are on the line? 

This sense of helplessness is horrendous but perhaps I, and people like me, have a small advantage? Our bodies have betrayed us, and we have been living in this state of helplessness for quite some time. My immune system can’t fight off infections which means something as simple as the common cold can kill me. I’ve buried friends because of what you call, “The sniffles.” I’ve ended up in critical condition because of an infection you might treat with orange juice and a nap. This fear? This uncertainty? This panic? Every day, with or without a global pandemic, this is my life and it will always be my life.

Did I ever think my chronic illness would give me a small advantage over someone who’s healthy? Not in a million years! Most days, I envy your ability to be carefree. Today, I’m grateful for an illness that has mentally prepared me for this moment.

Does that sound strange to anyone else? Yeah, it’s a weird one Mr. Grinch but weird makes life interesting.

You want to know what else is really interesting and incredibly amazing? We are such an adaptive species! No matter what life throws at us, we adjust and find ways to carry on living. Being immunocompromised is hard, especially during cold and flu season, but I’ve gotten so used to it that the precautions I take are second nature. I don’t worry, I don’t panic, I simply adjust and carry on because we are stronger and braver than we realize.

Life is scary right now, and living with the uncertainty is hard to handle but you’re stronger than you seem. You are braver than you seem. There are people out there right now who are smarter than we know and they are working tirelessly to find a cure, to stop the spread of this virus, and find a way to prevent it from coming back. 

How lucky are we, to live in an age of science and technology? How lucky are we to have doctors, nurses, front-line health care providers who are willing to put their lives on the line to help those in need? How lucky are we to have each other?

That’s the key, isn’t it? Being there for each other in times of crisis and in times of peace. The best way to fight this feeling of helplessness is to do what you can to help. Do you know someone in isolation? Give them a call, so they don’t feel alone. Believe me, that call means more than you know. If your neighbour can’t leave their home, drop groceries off at their front door. Practice social distancing (as much as possible) so we can flatten the curve and give our front line medical staff a fighting chance. If you have extra supplies, consider donating it to community clinics because they’re running low and they’re helping some of the most vulnerable.

Take one minute to thank those who are taking care of the sick and those trying to stop this virus from spreading. Doctors, nurses, first responders, lab techs, imaging technicians, the cleaning staff (that’s a thankless job). I’m leaving some of you out and I’m sorry! Practice gratitude, compassion, and patience with those who are serving us at the check out counter or those delivering our food.

Sure, it seems so trivial, but we can’t put on our armor and march into battle because we can’t see our enemy. So, instead of focusing on the things we can’t do, let’s focus on what we can do! We can be kind. We can show compassion. We can help those who can’t take care of their own basic needs. Let’s help each other in a million different ways but first, we need to stop the panic from taking control of our basic human decencies.

The stories of hoarders and people reselling supplies at grossly inflated prices? Taking advantage of the sick, weak, and vulnerable? Fighting over baby formula and not caring if another child dies of hunger? That’s not us, at our best and when this is over we’ll all need to deal with the shame, guilt, and fallout. We’ll all need to forgive ourselves, each other, and do a lot of work to repair relationships and trust.

Stop! Please stop hurting each other because we need each other if we’re going to survive, not only this pandemic, but life as a whole. None of us can go at it alone. We are in this together. We need to help each other; not hurt each other. Please! Please! Please be kind!

Please remember, you are braver than you believe. You are stronger than you seem. You are smarter than the fear. We will get through this if we help each other.

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Do I Still Believe In God?

Someone asked me this question: “After everything you’ve been through, do you still believe in God?” Whew, that’s a loaded topic. Kinda top heavy. I’m not sure how to answer you but I’ll try my best. Forgive me if I stutter and stumble. Deep breath. Here we go.

I believe in a greater power, and I call that power God. I identify with most Christian beliefs, but I don’t subscribe to a particular doctrine or dogma. I don’t limit myself to a single system of belief because there is so much to learn from others and each system, within or outside of Christianity, is guided by this greater power. Yes, the names we use vary, and the stories we tell differ but in the end, most religions, centre around a singular belief.

That belief, in one word, is love. I believe that God, or whatever name you choose, is an entity driven by compassion and grace. It is a companion that walks with us through the hard times. It celebrates with us in the good times. It helps us when we ask but not always in the ways we expect. Its ways are mysterious, and I’ll never understand how, or why, it does what it does but I do know it loves me enough to never leave.

Even when I leave, when I walk away, God stays close by and will always be there when I call. In that absolute certainty, I find comfort because nothing about my life has been safe or certain. I walk on shaky ground that brings me to my knees more often than not, and I need more than a hand up. I need someone, or something, to kneel next to me and keep me company. 

It’s a big ask and I’m fortunate enough to have many people who are willing to try. However, there are experiences we’ll never fully understand until we’ve been through them ourselves and I don’t want you to understand what this is like. I want you to stay standing because the thought of you hurting is too much. 

God doesn’t suffer as we do so when he gets on his knees next to me, I know he’s safe and that means I can let go. For me, there’s comfort in being able to let go and lean on someone, or something, that’s bigger, more powerful than what I’m facing. The love, in that moment, is greater than any I’ve ever experienced, and it gives me enough strength to stand back up.

Well, seven out of ten times at least.

To be honest with you, talking about this makes me very nervous. Too many times, when people talk about their faith it comes across as aggressive and manipulative. It’s a recruitment campaign that sounds more like a sales pitch than a genuine exchange of feelings and beliefs. It’s repulsive even though it’s trying to be inclusive and I don’t want you to feel excluded.

I grew up in the church, my dad’s a pastor, but I left several years ago. I have many reasons for leaving and maybe I’ll talk about that sometime if I can find the right words. Despite being gone for so long, when I see some of my friends from church they ask me, “What do we have to do to get you back?” I recently bought a car, and the salesperson asked me the same thing only they wanted my ass in a car seat, not a pew.

When asked to talk about my faith I hesitate because I don’t want to sound like a used car salesman. I want our interactions to be pure and untainted by ulterior motives. If it comes up organically then great! Let’s share our beliefs because I’m interested in your experiences with a greater power, faith, or religion. I think we have so much to offer each other, but I want to do it in a way that fuels a relationship and kindles a bond.

Does that make sense?

I’m now realizing that some of you might be new, and there are some gaps I need to fill in. When I was three years old, I was diagnosed with chronic renal failure. My kidneys were damaged by “medical misadventure” and they never recovered. We were told that they would shut down completely when I hit puberty and they were right.

By the time I was twelve, I had been spending more time in the hospital than at home with my family. I remember one morning, I woke up feeling awful and I told my mom, “I think I need to go home now.” She told me I was home and I said, “No Mom, the real one.”

From the age of twelve to seventeen, I think I spent a grand total of thirteen months at home with my family. The rest of the time was whiled away inside of BC’s Children’s Hospital. Surgeries, procedures, treatments of all sorts. My medical team did everything they could to keep me alive and despite their best efforts, I still died multiple times. They brought be back! Over and over again. They fought and we prayed.

Like I said, my dad’s a pastor and God, religion, was a huge part of my upbringing. The solution to every problem started with one sentence, “Let’s pray about it.” Given that most of the situations we found ourselves in were life and death? Prayer was one of the few things we could do too, hopefully, encourage a positive outcome.

It’s no wonder people ask me if I still believe in God because, when so much bad happens, it’s easy to wonder if there’s a God at all. In those moments, when there’s no light to be found, it feels like God is a fairytale or, worse, he’s just too busy to care. Those moments also rekindle an age-old question: Why does God let bad things happen to good people? I have no answer to that but when it’s my time to stand before God, you bet I’m asking.

I could lie to you and tell you that my faith never wavered but you’d see through it in a second and I respect you too much. Of course, my faith faltered. I’d even say it was shattered! My faith was tested and I was found wanting. Keeping the faith isn’t easy and sometimes it’s damn near impossible. 

Several years ago, when my second kidney transplant failed, I couldn’t bring myself to pray. I couldn’t talk to God. I couldn’t look at him without wanting to spit. I couldn’t be in his presence or welcome him into my home. I felt anger and betrayal. If God was a physical entity, I would’ve happily punched him over and over until my hands bled. I called God every name you could think of and then I made up some new ones.

Here’s the thing, I never questioned whether or not God was real. I know God is real because I died and God was there when I crossed over. I felt him. I heard his voice. I was on the other side of life and God was there, waiting for me, and I’ve never felt so safe, loved, or cared for in my life. Nothing will ever convince me that God isn’t real because he was there when I died and he told me it was time to go back.

I’ve never doubted his existence, but I have doubted his love for me. When my life fell apart, I couldn’t see how how a God of love could let this happen. I hated him for it! I hated him for sending me back to this life, this body. It would be so much easier if I didn’t know he was real. Knowing he’s real, knowing he could do something, but feeling like he’s abandoned me? That’s devastating.

My heart was empty. I was alone. I was on my knees, and no one could be there with me. Except, I looked over and God was kneeling next to me. We didn’t talk for a long time. There was too much pain and words can’t heal everything. We stayed in the silence for days, months. He let me grieve, and he let me be angry. He stayed there with me until I realized he hadn’t abandoned me.

It wasn’t a lightning bolt moment and there weren’t angels singing somewhere in the distance. I simply said, “I hate you.” God nodded and told me it was okay. We stayed together in that silence and that’s all I needed. That’s what God is for me. A companion. A friend. A confidant. My one safe place in a life that’s been anything but safe.

I don’t talk about my relationship with God very often because it’s so deeply personal. It’s sacred ground that I fiercely protect because without it, I feel lost and scared. I need this one safe space more than I need food or air. I need to believe in a greater power, regardless of its name, because life is too hard and too painful to go through it without the hope of something better.

I hope I answered your question without stumbling too much.

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I’m Not Lost; Just Wandering

“All that is gold does not glitter, Not all those who wander are lost.” -J.R.R Tolkien, The Fellowship of The Ring

I’m not lost! I’m standing right here, in the middle of a forest, looking up at the treetops and thinking silly thoughts. Thoughts like: What do you think the trees have seen in the many decades they’ve rooted to this spot? Who was the first human being they saw? Were they just a sapling when the first foot fell right next to their roots? Maybe they were a little older? I’m sure they’ve seen bears, squirrels, or something more Jurassic. But a person? I wonder who they were? What was their name? Why were they here? What was their story?

I love a good story.

Oh, here’s a silly thought! Wouldn’t it be cool, when they’re all alone, if the trees talked and moved? The sun goes down, the air turns cold, and silence falls. There’s a sigh, a groan, and they stretch. Finally, the tiny bipedal creatures are gone! We can move again. Their trunks crack as they shake off the stiffness and, yeah, it feels so good. Silly humans startle so easily. Gotta be still while they’re around so we don’t scare them but once they’re gone? The rain forest dances!

So many silly thought running through my mind as I stand here, in the middle of the forest, looking up at the treetops. Light shines through the very tippy tops and the needles glisten. They’re still damp from last nights rain and now they look like diamonds dancing high above my head. Sparkling, shimmering, dancing. You can keep the gems found deep underground. I prefer the diamonds in the sky.

What’s that? No! I told you, I’m not lost. I’m right here! Do I know where here is? Uh, well, kinda. My car is parked somewhere over there. The trail led here and it goes that way. How lost can I get following a trail through the woods? Oo, a squirrel! I wonder where it’s going?

Following would be a bad idea! Right? To be honest with you, I’m not an outdoor adventurer with years of survival training. I’ve never rubbed two sticks together and built a fire. I’ve never hunted for food with a bow and arrow or something more gruesome. I have picked berries! At a farm. I was eight. I’m guessing that doesn’t count as foraging for a sustainable food source. Yeah, I’m not a survivalist, but I like to play pretend for an hour or two. As long as the trails are clearly marked.

The last time I saw a bear, out in the wild, I thought it was a burnt stump until it wiggled. The stump wiggled. WTF? It turned, looked at me, and yawned. I froze, slowly backtracked, and started yelling, “The stump wiggled! The stump wiggled! Unlock the damn car!”

So smooth. So calm. Did not panic as much as I’d have thought. Mm-hm, nerves of steel.

You’re right! I shouldn’t follow that squirrel into uncharted territory but it’s so tempting.

A year ago, if asked, I would’ve confidently told you that I was one hundred percent a city mouse. Outdoorsy? Me? No! Trees. Fresh air. Muddy trails. Uh, no thank-you! Give me skyscrapers, diesel fumes, and sidewalks covered in apple juice. (That liquid is yellow. It must be apple juice. No other explanation can be found. Yes, I’m deliberately deluding myself.)

I liked the idea of nature and hiking looked cool for other people but me? I’m a gimp. My legs don’t always work. My hip likes to vacate its socket with reckless abandon. I limp. I hurt. Go out into nature? Uh, that’s for people whose bodies do what they’re supposed to do. It’s not for someone like me. My body is broken. I’m disabled. I do not belong out there with the able-bodied people.

I couldn’t possibly do it! No way. No how. I physically can’t walk out there and back.

But what if I gave it a try? Just once! Go out on an easy trail that’s not too long. There are a few places close to home and if I can’t do it then I turn back. No shame in turning back right? But what will people think? I should tell you that I don’t care but that would be a lie. Maybe, if I go early, no one will be there so I won’t get in the way and no one will see me hobbling along. Go early enough and no one will see someone who clearly doesn’t belong out there in the wild woods.

As soon as the sun came up, I walked out of my front door with my camera, walking stick, and dog. I drove down to the Fraser River and picked a trail that was a fairly straight shot to a lookout point. It was a three kilometer hike in. Easy. I could do it. Damn it, what was I getting myself into?

There were a few cars in the parking lot, but the forest was thick and it swallowed all who ventured into its domain. I followed the trail and it was quiet, peaceful. The trees seemed to rise endlessly up into the sky. Moss hung from the branches and the rising sun cast eery shadows. I half expected to see fairies bounce from limb to limb and werewolves on the prowl. As I stared into the trees, I pictured the first people who called this place home and I wondered how much it had changed since their day. This was their home and now it was a park. What would they think if they came back today?

I limped along, lost in my imagination, and before I knew it I stepped out of the trees and on to a beach. Clouds hugged the mountains on my right. To my left, a group of people paddled their canoes down the river. There was a bear print in the sand and I sighed. So we meet again, old friend. This time I won’t startle so easily. 

I stared out at the river and for the first time in almost an hour, I felt the ache in my broken body. Somewhere in the trees, I’d forgotten about the pain. The pain had been there, it’s always there, but I’d wander out of my comfort zone and I’d forgotten about it. In that space, in that moment, the pain wasn’t a powerful as the trees, the moss, the bear print in the sand. More importantly, I was more powerful than the pain because I’d made it this far. I stepped onto the trail, put one foot in front of the other, and I’d done something I didn’t think I could do. I was slow and awkward but I did it!

It’s been a year since I first stepped out of my body and on to a trail. If you’re looking for me on a Saturday morning, weather permitting, you’ll find me following a random trail through woods or wetlands. I’ll have my camera, walking stick, and dog. I’ll look rather lost, and my limp will seem out of place but I slowly push forward. One foot in front of the other. Slow and awkward but there will be a smile on my face.

Not all who wander are lost but sometimes getting lost is exactly what I’m looking for. Picking a trail and following it until I forget the pain. Staring up at the trees until I forget that my body isn’t whole. Walking until I find this golden moment of absolute peace and stillness. It’s a moment where, no matter how many bears are near, I feel safe and strong. I feel like, maybe, I can do more than I think I can do. 

Maybe. Just…Maybe.

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I Can’t Stop Should-ing All Over Myself

Let’s take a walk, shall we? Not through the forest, along a beach, or up a mountain. The trails we tread won’t be firm or formed by shifting tectonic plates. It won’t be lit by the sun or a street lap. It’s deep inside an ill-traversed cavern full of wonders and dangers. It goes deep inside a place I don’t like to visit but a place I spend too much time.

My mind is a dark, damp, cave. There’s mold clinging to the walls. I can smell it spreading as the air grows colder. It’s feels like my brain has been locked up tight for a century or two. Hiding treasure deep inside a vaulted grotto just waiting for a daring explorer to break the code. Waiting. Still waiting. Forever waiting.

There’s a slow drip in the corner that’s keeping pace with my heart. Drip. Drip. Drip. There’s an echo off a far wall, and it sounds like two hearts are beating but it’s one. It always has been, always will be, one but the echo, its companionship, is comforting

Ah, there goes a thought but as soon as it strikes it’s deflected by another and they both bounce off aimlessly. They continue their journey without fully realizing their purpose. Each thought dances with a memory that, like an old photograph, slowly fades away with each breath. Feelings tied to an unraveling string. Thoughts, memories, feelings catch in the wind and disappear into the dark, damp, cave but at least I have my echo.

I trace the pathways of my mind and look for tracks to follow, but they’ve been washed away. There are puddles to wade through, about ankle deep. Murky water with a greenish hue that shimmers even though there is no light. It’s mesmerizing and I stop to stare. It dances to a rhythm I can’t hear. Swirling this way and that. Faster, faster, and then it slows till its movements are barely noticeable. I don’t think it likes to be watched, so I leave it be and walk on.

My open palm presses against the damp walls and I feel a pulse quivering restlessly. It’s not strong and vibrant. Not what I would expect from a life force. It’s rather timid, shy, but it’s trying to carry on. There’s a tiredness in its movements. Its pulsations are straining but they refuse to stop. There’s still some strength left. It’s not ready to rest.

Laughter bounces off the walls and a warm breeze replaces the chill. The dampness is replaced by an aridness that laps up the moisture. A bolt of lightning shoots through the walls and under my palm there’s a renewed fervor. The pulse quickens, it feels less strained, and the tiredness is replaced by an energy that feels new but familiar.

The laughter continues, the lightening illuminates the high ceilings, and I see the scars cut into the cave. Raw and red. Deeply set. Thick cut. Some are fading. Some are fresh. All are healing but healing takes time. Healing takes patience. Healing takes more laughter, tear-filled puddles, and a beating echo bouncing off the walls.

The laughter fades, the lightening subsides, and the dark, damp cave resumes its tired hum. The ground trembles. The walls shake. The beating echo picks up speed. I fall against the wall, but it pushes me back. It’s time to go. I’m not a welcomed guest inside my own mind or my body. It’s time to leave the darkness, so I make my way out through the shimmering puddles and past the scarred walls.

The last few months have been difficult for me. A number of stressors have come up, and I’ve been feeling like I can’t get my head above water. Just when I think I can breathe, another wave knocks me under. The stressors, while a bit much, haven’t been unmanageable. If I had a brain that functioned in a healthy way then I’m sure they would be relatively minor. Especially when I compare them to other things I’ve gone through.

My car died, and I had to find a way to get another one. There was a problem with the pipes in my walls that, thank God, turned out to be nothing to worry about. The holidays always bring a weight that I don’t handle very well. There are external factors like watching good people suffer, horrible people prosper, and illnesses take the lives of people who were loved.

Hopelessness, insecurities, the pressure to be more and feeling like I’m falling short, yet again, bounce around untamed. It’s all too much and so I shut down. It feels like everything has pilled up and it’s blocking off the entrance. My brain feels like an abandoned cave. Locked up tight, covered in mold, and drowning in unshed tears. An echo chamber with nothing but the beating of my heart filling the silence. Spurts of joy that last a few minutes or seconds. Staying long enough to remind me that happiness exists but not long enough for me to savor it. Taunting me with something I don’t think I’ll ever fully experience in a meaningful way.

I feel like I’m living on a fault line topped with quicksand. One good shake, it’ll all cave in, and I’ll be buried alive. The shake doesn’t even have to be that big. A hiccup could do me in, and I know I shouldn’t feel this way. I shouldn’t feel like a guest in my own head. I shouldn’t feel like a squatter in my own body. I shouldn’t…

Look at me, should-ing all over myself!

One thing I’ve learned from therapists and psychologists is, when it comes to our mental health, “should” is a very dangerous word. It’s a word-based in negativity and judgment. It’s rooted in the perceived failures of ourselves and others. It breeds guilt and shame because it tells us we’re not enough. Our choices weren’t good enough. Everything we should do or be has, and will always, result in failure.

I’ve been should-ing all over myself lately and it’s not helping me get out of this funk. It’s digging another pathway in my cave and letting more water pool in the corners. It’s pulling me down further, and it’s adding another layer of mold that I won’t be able to scrape off.

To be clear, this isn’t the cause of my headspace! It’s a symptom of a much larger problem, and it contributes to the ferocity of an illness I’ve been battling for most of my life. Should-ing is a byproduct of my insecurities and I’m trying to catch myself when I slip into the habit. I’m trying to break this habit and replace it with something healthier.

If I can change should to “I need,” “I could,” or “I would like to…” then I change my outlook on any given situation. Instead of feeling helpless, I take back some of the control. This is especially true when l feel an overwhelming hopelessness. To be honest, it’s a feeling I have more often than not because why should things work out for me this time?

Yes, there are things I would like (or should have) but some of these things are beyond my control. I get lost in that feeling! It takes over and I stand, stuck, staring up at the vaulted ceiling of my cave. Finding things I can do now, steps I can take, eases this overwhelming sense of helplessness and replaces it with a glimmer of empowerment. 

Small things that don’t seem like anything to anyone looking in. Doing the dishes or taking out the garbage. Making the bed. Taking my dog for a walk. Write a blog post when all I want to do is lay down and cry. I know these things won’t change my life but at least I feel like I have some control over my environment. I’m not useless. There are things I can do even when my broken body can’t do much of anything. There are things I can do when my broken mind won’t let me do the things I think I should be able to do.

It comes down to me, cutting myself some slack and giving myself credit for the thing I have done or can do. I’m my worst critic and my very own troll. A troll that lives in a cave inside my brain. I guess it’s a good thing we didn’t venture in too far inside the damp, dark, cavern. Somethings are best left undiscovered.

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Listening To Better Angels

“The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it sows perhaps the greater.” – J.R.R Tolkien (Lord of the Rings: The Fellowship of the Ring)

It’s hard for me to look on the positive side of life. It’s hard for me to see the good when everything is so bad. My mind goes to the worst-case scenario, and it won’t even entertain the best case because, with my luck, it will be a hung jury. Finding a source of light in the darkness? Seeing wonder and joy in the awful and cruel? It’s not my default setting but I’m praying for better angels.

There are people in my life who always see the positives in every situation. I have a friend who’ll spin a plate full worms into a bowl full of lucky charms. It’s a gift! I don’t know how she does it. I won’t tell you the nickname she acquired because she would kill me but the theme song is killer. Yes, we wrote her a theme song because her ability to find the happy in the worst situation is a superpower. If you have a superpower then you need a theme song. Those are the rules. I didn’t just make that up. Don’t fact check me.

We are polar opposites and how we became friends is a mystery but I don’t want to think about it too hard. Why ruin the magic? 

Seeing the best when the worst is out in full force? I don’t know how you do it! You wondrous soul who will find a tiny sliver of good in a forest of horrible. You are incredible and mystical. A unicorn dancing unabashedly through a lions den. Dance wonderful creature, dance. Seriously, dance a little faster because those lions look hungry. Dance damn it!

The world is full of lions with grumbling tummies. Every one of them wants to nibble on a piece of us and…Wow, that’s dark. I’m in a dark mood. Do I hide it well? Some day’s but not today. I can’t shake this mood. I’ve tried jumping up and down but it won’t break free. I’m tired. My head hurts. I want to crawl into bed and go to sleep. If I didn’t have to write this then, yeah, I’d be under the covers with some music blaring to shut out the world.

I want to sell everything I own and move to some small island. Dig a hole into the ground and build a hobbit-sized home in the side of a mountain. Hideaway from the world until the world calms itself down and finds a way to be kind. Yeah, I’ll be there for a very long time. Curled up inside my hole of a house with nothing but a fire and pot of tea to keep me warm.

Why is it so hard for us to be kind to each other? I know I talk about kindness a lot, and I don’t see myself stopping. I’ll keep bringing it up because kindness seems to be a dying art. Cruelty is so easy! Especially when we aim it at someone who’s so openly different. It’s a chep shot! Instead of praising their uniqueness we attack their inability, or unwillingness, to conform with our idea of normal.

As children, we’re told to be ourselves but when who we are isn’t acceptable? “The world is indeed full of peril.”

In Canada, there are protests in support of indigenous peoples whose land is being taken for a pipeline. The politics of this situation is messy. The environmental, economic, and political complexities far exceed this blog. I won’t wade into that quagmire because I’m ill-equipped to give an unbiased opinion. But I do have an opinion about the grief caused by our darkest demons.

The pain felt by people who are treated like unwanted guests in their own home? The prejudices, the white privilege, and the agony we still cause? That’s very real and to see good people, once again, held at gunpoint while their homes are ravished is gut-wrenching. There’s a sense of helplessness and hopelessness that has captured our nations attention. It’s forcing us to face our past and decide what future we want for all involved.

For those of us in the position of privilege, it can be uncomfortable to face our past, and it can be difficult to move towards an uncertain future. The mere mention of white privilage get’s backs up against the wall and fists start to clench. Yes it’s uncomfortable but it could be worse. We could be the ones suffering but we aren’t and we need to be uncomfortable with that. We need to be uncomfortable with the thought that anyone in our country, around the world, is suffer right now. We need to ask the big questions and make big changes.

What does it mean for us a country? What does it mean for us, the privileged few? Well, with any luck it will mean a balanced, peaceful, society where equality is a way of life and not just a campaign slogan.

Oh but it’s long overdue! Like all colonial nations, our history is one of oppression and violent suppression. Our voices have been raised for too long, and it’s time for us to be silent. It’s time for us to be still, see the pain we’re causing, and listen to voices of those who have been silenced for too long. I don’t know if that will stop the pain, it won’t erase the past, but maybe we can find a way to heal? Will it help? Does it make a difference? Will it bring about change?

There are still the voices of opposition. Voices regurgitating the same, tired, stereotypes that were born out of racism and racial superiority. The deniers and outliers that yell loud enough to drown out the cries of the wounded and the dying. They choose blindness over kindness and brush away the “snowflakes.” They choose to embrace the darkness because there’s comfort in the shadows. There’s a false sense of safety in the known darkness.

It’s a feeling I can relate too because, as I said, my natural inclination is to see the negatives before I consider the positives. I live closer to the darkness than I care to admit. I sit in the shadows and wallow. I look for the worst instead of trying to find the righteous because darkness is easier. Lighting a fire takes work, and I’m just so tired.

Thank God for good people who live in the light because they offer us a counterbalance. Without those lucky charms, I think I’d become someone I don’t like. Worse, I’d become someone I don’t respect. These better angels, crying for change, make us better people. They help us become the people we’re meant to be. Good, kind, generous, souls who light a candle for someone who’s struggling. 

In a darkening world, all we can do is hold a candle and offer a little light to those around us. They can accept or decline but at least we tried. Our voices may be a whisper but to those of us crawling forwards? It’s a beacon of hope in a world full of peril.

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Do You Love Your Scars?

Do I love my scars? Yes, most of the time I do, but maybe love is a strong word. I’m not enamoured with these lines on my skin. When I look at them, I don’t feel an intense euphoria and an unconditional affection. My heart doesn’t skip a beat, and my stomach doesn’t twist itself into knots at the mere thought of these scars.

There’s a strange fondness, and I feel bonded to my scars. My identity is closely tied up in them as much as their existence depends on my survival. They tell our shared story like hieroglyphs on a cave wall. This story is, quite literally, forged in blood, tears, and broken bones. We’ve been through so much together and that brings an intimacy that goes beyond emotion. It’s a kinship. 

I don’t think I’ve counted how many scars I have on my body but there are a lot. Thousands of needles have left their marks. I swear, if you see my hands and arms, it’s not what it looks like. I’ve had hundreds of surgeries though, for a lot of them, doctors cut along the dotted line. I suggested a zipper but they didn’t go for it. We’ll never know why.

After surgery, when it was time to change the dressing, my family would look down at the incision with curiosity and awe. They’re medical people and this kinda stuff is just cool. They marveled at the clean line and the knotted sutures. Every time the dressing was removed, they would note how well it was healing and tell me I’d have a beautiful scar. Which sounds a little strange? 

Who thinks scars are beautiful? Isn’t that some sort of fetish? If so, it’s cool, you do you. Me? Nope, doesn’t do it for me. Doesn’t turn me away either because scars are cool. Scars tell our stories when words fail us but sometimes I want my story to be a secret.

My first surgery, and my first scar, happened when I was three years old. I had urinary reflux. Urine traveled from my bladder back up to my kidneys and doctors had to fix it before my kidneys were damaged. Oh, the irony! The surgeon made a mistake and did the one thing we were trying to prevent. My kidneys were damaged, I was diagnosed with chronic renal failure, and my long relationship with scars began.

For some of us, this relationship is fraught with shame, self-loathing, and pain. It’s a blemish that reminds us of the worst moments of our lives. It’s a stain on something so beautiful and precious. It can leave us feel damaged and disfigured.

There’s a purity that we only find naiveté. It brings us back to childlike wonder. It’s a perfect space that hasn’t been tainted by the cruelty of a moment. It’s a peace of mind that hasn’t been spoiled by the savagery of life but then the canvas is slashed and we’re left with a reminder of what was and should’ve been. Now, when we look at our scars, we feel the sting of the incision, the pain of the past, and grieve the loss of that innocence.

When I look at my scars, I feel a complex mix of emotions. My stomach looks like a road map drawn by a toddler on a sugar high. There’s a jagged cut along my neck that makes me look like an extra in a low-budget horror film. There’s a scar on my wrist that looks incredibly suspicious, and people can’t help but stare. They never ask but they will judge. They look at the marks from the needles and IV’s with suspicion, confusion, and disgust. 

Which is baffling to me! My tracks are from an illness as are the tracks from someone recovering from addiction. Both should be treated with compassion, empathy, and kindness. Both of us have survived something horrible, and we’re both just trying to heal. If you’re in recovery or moving towards recovery? Bless you. You can do it. I believe in you!

Rant over. Thanks for humouring me!

When I was a kid, I took my families cue and embraced my scars. They thought it was cool, so I did too. I didn’t hide my scars. I often showed them off. You’d think I’d just gotten a new toy when I explain, “Look what I got!” I’d been cut open and I’d healed. The pink line was a badge of honour. Why would I be ashamed of that? Nope, look at it! It’s badass.

The older I got, my perspective changed a little and I settled into a pattern of love and begrudgingly tolerated the marks. On one hand, my scars remind me of things I’d rather forget. Moments of absolute terror when I thought I’d die. Going to sleep in an operating room and not knowing if I’d wake up. Waking up in pain and wishing I could escape my body. They are a mark of pain and loss. These scars trigger feelings of regret and longing. I wish they didn’t happen, but they did. They’re mine. They’re a part of me.

There’s that other hand, though. When I look at my scars, I see a survivor. I shouldn’t be alive right now. Medically, I should not have survived. When I was sixteen, I was given less than six months to live. Before this last transplant, a few years ago, I was given less than a year. I’ve died. I’ve come back. I shouldn’t have but I did. I survived when so many others didn’t and I have the scars to prove it.

I don’t like the way some of my scars look. They’re ugly, disfiguring, and, yeah, I’d like to get rid of them but I won’t. At least, I don’t think I would but never say never right? I don’t think I’d remove them because, for all the negatives, I still love what they signify. They belong to moments of triumph over pain. They’re a symbol of strength, courage, and resiliency. These scars took blood, sweat, and tears. I earned them because I didn’t give up. I wanted too but I didn’t and I’m proud of that. 

I guess that means I’m proud of my scars?

Should you be proud of your scars? If life was perfect, absolutely! Love who you are because you’re a survivor! You made it. You’ve earned this victory lap. Throw yourself a parade and stand tall. You’re a survivor!

It’s messier than that, isn’t it? In one paragraph I say they remind me of the worst moments of my life. In the next paragraph, I’m proclaiming my love. Is there a better word than: Complicated?

These marks, these imperfections, carry more than one meaning. They came from a double-edged blade and that twists the healing process into a Gordian Knot. We have to journey through a labyrinth of fear, relief, pain, and healing. We have to find a way through the grief of losing ourselves, our identities, and our innocence. Our scars may look like road maps but they don’t show us the way out.

Each of my scars has a story but sometimes that story is too painful to tell. Sometimes the pain is physical. Even after all these years, I still feel my skin knitting itself back together. I feel the knife that made the incision. I feel stitches pulling even though they were removed a long time ago. My muscles ache as if they’re still wondering why I let them get hurt.

The necessity of each procedure was obvious, and it’s not a question of practicality. It’s a philosophical, maybe even a spiritual, question that has no real answer. At least, there’s no answer that will placate the aching muscles or still my mind. I’ll never understand pain and there’s no justification for suffering. 

In my experience, what hasn’t killed me hasn’t always made me stronger. Sometimes it broke me apart, and I’ll spend the rest of my life looking for the missing pieces. Sometimes all I find are more scars. Scars hidden so deep, they haven’t had the chance to fully heal. Will they ever? God, I hope so! 

While scars fade a little over time, they never disappear so I suppose it comes down to me, making a choice. What do I want my scars to signify? How do I want to view them? Yes, in a perfect world I would choose the positives over the negatives, but I know some choices are a knee jerk reaction. 

Sometimes there are other factors at work which is why I need to take a beat. I need to give myself permission to feel the pain and sorrow. Then I can make a conscious effort to refocus my attention. Remind myself of the awe and wonder I once felt. Go back to a time when I was a little more innocent and put my scars back in their rightful place of honour.

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But Still I Smile

“The robbed that smiles, steals something from the thief.” – William Shakespeare, Othello

I have this weird…twitch? Is that the right word? Habit? Quirk? Compulsion? Whatever it is, it’s peculiar, and it freaks some people out. The worse the situation; the more I smile. The sadder I am; the harder I laugh. Jokes, sarcasm, witticism that are worthy of a groan. I can’t help myself. They come out of my mouth and people either laugh or wince. I get this bubble of excitement in my chest, and then two minutes later I deflate, reload, and try again because I can’t help myself. 

If I don’t find a way to laugh, I will start crying and I’m not a fan of crying. Well, I’m not a fan of public crying. Behind closed doors, when I’m all alone, I can ugly cry with the best of them but in front of people? Nope. It makes me so uncomfortable and I just want to melt away. I’m a take on the chin kinda gal. Take it, swallow it down and let it out with a joke, smile, and a laugh. That’s how I deal with life and it’s many, many, potholes.

Is it healthy? Uh…

We all have our unique ways of coping with challenges. My Gran would put the kettle on and make a pot of tea. There was no problem too big that a cup of tea couldn’t fix. You know what? She wasn’t wrong. Is there a better feeling than wrapping my hands around a steaming cuppa tea? I swear, every time I make myself a cup, I hear my Gran say, “Hi love!”

When things became too much, my grandfather would disappear into his workshop and tinker away on one of his inventions. He was always coming up with creative solutions to problems that had already been solved. But he could do it better and more efficiently! No one could convince him otherwise. I think it was his way of reclaiming control when he was presented with a problem that couldn’t be fixed with a little elbow grease.

My mom gets lost in a book. My brother fixes old cars. A dear friend does cosplay and charity work. She makes kids smile and, okay, that’s better than a cup of tea. We all need a pressure valve because life, that little minx, is always scratching up the furniture. Without a quick release, we might prove that spontaneous human combustion is possible.

A few years ago, I was in pre-op waiting for heart surgery. I have an arrhythmia called Premature Ventricle Contractions (PVC’s) and Ventricle Tachycardia (VT or VTAC). If it isn’t treated, it can have fatal consequences. I take medications, and I have an implanted cardiac defibrillator (ICD). There had been a recall on my ICD and it, along with the wires going into my heart, had to be removed and replaced.

It’s not the most complicated surgery I’ve had done but anytime we’re dealing with the heart, the stakes feel a little higher. The surgeon and anesthesiologist went through the consent forms. They laid out the risks, the possible complications, and the potential for a “negative outcome.” Is it bad luck for doctors to use the word death? They always put a spin on it. Curious.

There was a risk, a small risk, that I wouldn’t wake up and I quipped, “Well I do like to sleep in.”

My dad said, “It’s like raising the dead!”

The doctors laughed and assured us they had, “Ways of waking the dead.” Wink. Wink. Chuckle. Finger guns. I signed the paperwork and sat back to wait for my turn on the meat grinder. 

A nurse shook her head and scowled. “Do you really think jokes are appropriate in this situation?” Clearly someone hadn’t heard of gallows humour or, perhaps, humour wasn’t her forte and that’s okay. We all have our strengths, and we play to them as best we can.

Also, I realize that gallows humour isn’t for everyone, and some find it a bit offensive. Some prefer to spend their time in somber reflection before facing the knife. Others would rather quietly pray for strength, guidance, and a positive outcome. How you need to face a terrifying situation is perfectly acceptable and understandable.

For me, my family, laughter has always been our way of dealing with whatever life throws at us. We always try to be respectful of our neighbours and keep our nervous giggles to ourselves, but there will always be giggles. Even if it’s a stretch, even if we have to repeat tired old jokes, we will find humour in our surroundings because laughter takes the power out of fear.

Fear is the prince of darkness, and its thirst for blood knows no bounds. It’s the thief joy and peace of mind. It will always want more and it’ll never be satiated. Fear will conquer us if we don’t do something to fight back. It wants us to believe that it is invincible, that it’s stronger than us, but that’s a bold-faced lie. Its greatest weakness isn’t a soft underbelly but our ability to stand and smile it down.

How we do that will be as varied as we are but it can be done. Prayer, a cuppa tea, bizarre inventions, or gallows humour? Pick your weapon! The thief loses a little of its power when the robbed smiles back. In my experience, fear doesn’t go away completely, but it takes the edge off. It gives us the ounce of courage we need to proceed because fear will, if we let it, keep us from moving forward.

I went into that operating room afraid but with a smile on my face because I shared a moment of joy with the people I love. There were complications. I was ventilated and in the ICU for a few days, but even then my family helped me find the funny. They lovingly teased me when I tried to finger-spell and drunkenly scribbled nonsense on a whiteboard. I may not have been able to laugh out loud but still, I smiled. Those moments of joy kept me from falling over the ledge into an uncontrollable panic. Laughter kept me grounded, it kept me present, and it got me home.

I laugh when I should cry and I smile when I should scream. Maybe it isn’t always the appropriate response and if it offends you? I’m a little bit sorry. Fear is a strong enemy and my response might not be right for you, and that’s okay. We all have to find a way to take back what that thief is trying to steal. 

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I Can’t Adult Right Now!

I DON’T KNOW WHAT I’M DOING!

Where did that come from? Is my caps lock is stuck again? Weird. Thought I got that fixed. My bad. Sorry for yelling. It’s not my style but every once in a while it sorta just slips out. Kinda like…Nope let’s leave that one alone. So many way’s it could go wrong.

What was I saying?

I don’t know what I’m doing. In general. In life. As a whole, complete, human being I’m kind of a bumbling mess. I try to make plans. I love making plans. Nothing is more satisfying than coming up with a good plan, writing it down, and laminating it. I stick it to the fridge with a banana magnet I don’t remember buying and, ah yes: Heaven.

It’s right there in a fancy font. Key points highlighted in bright yellow. Bullet points in bold letters. A step by step guide to an idiot-proof plan that can’t be screwed up by anyone.

I love a good plan.

Unfortunatly, I’m the idiot who finds the flaws in my own foolproof plan. Even though, as I’m writing it down, I’m thinking, “How can anyone screw this up?” Challenge accepted! What? No! I didn’t mean to! I tried my best. I said a prayer. I crossed the appropriate number of fingers and toes. I tried really, really, hard.

But no matter how hard I try to plan there’s one simple fact, a reality that I have to face, and that is: I DON’T KNOW WHAT I’M DOING!

I yelled again.

I’m sorry.

You don’t deserve to be yelled at. The ears and the eyes. The pain. I’ll try to restrain myself. Here we go. I can say it without raising my voice. It’s within my power to control the volume of my vocal cords.

I don’t know what I’m doing.

NAILED IT!

Sorry.

Nailed it.

My whole adult life, I’ve felt like a lost fart in a thunder cloud. Out there somewhere, a pungent smell, just floating around without direction or purpose. Coming and going. Trying to make an impact but lacking the physical form to make any kind of dent.

If you want to see a look of bewilderment and panic on my face? Ask my opinion about things. Use a tone that suggests you really believe that I have something to say about, you know, stuff. My mouth will open and close but words won’t come out. You want to know what I think about how the people running the places are doing with their shenanigans? Really? Me?

You, you precious individual, coming here to hear what I have to say about life. Really? I don’t know what to say. I’m gobsmacked. Yes, that’s a word. It means wow you actually showed up and now I don’t know what to say so I’ll let a weird squeaking noise fill the awkward silence.

Thank-you? Yes! Those are the right words. Thank you, you wonderful person, I appreciate it. Really, it makes me feel warm, and there’s an odd sensation in the middle of my chest. Is it a heart attack? No, no, I think it’s an emotion? Happiness? That’s a thing right?

See! I don’t even know how I feel. That’s something a grown-ass woman should know. Emotions and their accompanying identifiers. What? Yeah, I feel…things and no, I don’t know what those things are. I feel like Alice after she fell down that hole but instead of finding Wonderland, I became an adult.

Arg, I miss being a kid! 

Well, I was never actually a kid in the traditional sense. I was young and of a child-like consistency. You know, tiny and bendy. Maybe a little squishy. Let’s just say I miss being young. Yep, that works.

People would ask me things and all I had to say was, “Gotta ask my parents.”

Can’t say that anymore.

When I do people make faces and walk away very slowly so they don’t startle me.

Being a kid meant I didn’t have to make decisions. My parents gave me choices, and they listened to my thoughts and feelings. They took those feelings and thoughts into consideration because they always tried very to be considerate. Ultimately, they made the choices and that was just about the greatest thing ever!

Especialy when you have a chronic illness and there are a lot of big decisions that have to be made. When I was three years old I was diagnosed with chronic renal failure. My kidney’s were damaged and slowly died. By the time I was twelve, I needed a transplant or I would die.

In Canada, when we turn twelve, we’re legally responsible for our medical decisions. We get a say in what happens to us and our opinions become the final word. However, I still deferred those decisions to my most trusted source. The way I saw it? My parents knew everything, so they would know what to do. I could trust them to do what was right, so I usually went with what they said. There were a few moments when I said no when they might have said yes but for the most part I went with their play.

I still had to give my consent. I had to sit through a lecture on the risks of whatever was about to happen to me. There was a weight that came with making choices but it wasn’t something I had to carry all on my own. I could still look at my parents, and they would tell me what to do.

Looking back, as an adult, I think my parents were feeling how I’m feeling now. I’m sure there were plenty of times when they wanted to scream, “I don’t know what I’m doing!” Mom, Dad, correct me if I’m wrong. 

Ah to be young and innocent! Oh but that was then and this is now. Now things are much more complicated. People are looking at me like I know things. They’re expecting me to make decisions. Decisions that could change the course of humanity forever!

I’m a one-woman disaster movie and, look at me, I’m no action hero. I’m the bait. I’m the first person to get vaporized by the laser ray, gun, thingy. You don’t have to outrun the bear you just have to outrun me and that ain’t hard.

Okay, I hear ya! Stop being so dramatic. No promises but I’ll try.

I am really good in a crisis as long as it’s someone elses crisis. (Did that make sense?) If something’s on fire then I’m your girl. Bleeding from place? Don’t worry I’ve got this. Feel like the walls are caving in? I’m an excellent listener!

Taking care of normal, mundane, things in my life? I’m a bumbling baboon. 

I’m probably not the person you should turn to for answers but the questions keep coming. Decisions have to be made. There’s a choice between shitty and fucked up and that’s messed up! They expect me to decide but flipping a coin isn’t a “reasonable” or “mature” way to make life-changing decisions.

Several years ago my kidney transplant failed, it was my second transplant, and I had to go back on dialysis. I’d just started to figure out my life. I had moved out of my parents place. I bought an apartment like a real adult. I had a job that paid the bills and I didn’t hate it. It wasn’t my dream job but the people were nice and, you know, there were bills to pay. 

Things were going great until they weren’t. I’d had that kidney for ten years. Ten damn fine years. It’s a good run! It’s about the average life span of a transplanted kidney. Transplants save lives, but they don’t cure the disease. Sometimes the disease fights back and when it does life is gonna suck.

What really sucked was, this time around, I was an adult which meant it was all on me. Laying in that hospital bed, after my options were laid out, there was a long stretch of silence. They were waiting for me to tell them what to do next. What treatment options did I think were best for me? Which plan would we follow? Did I want to follow any plan or did I want to just call it a life and move on to whatever comes next?

They waited.

I waited.

Somebody would tell me what to do. Any minute now. It was going to happen. Someone would swoop in with all the answers. Any second now.

Hello?

Someone?

Anyone?

Nope. Just gonna let me sit here awkwardly. Okay. Cool. Cool.

I don’t know who said it, but someone did: “You need to make a decision.”

What I needed was a minute but there didn’t seem to be any minutes to spare. Things needed to happen if they were going to happen at all. I needed to make a choice. They needed me to say the words. I couldn’t form those words at all. I couldn’t remember how to make words or sounds come out of my mouth.

My mind was a completely blank space. A black hole swirling with shattered thoughts, fragmented memories, and absolute panic. I knew what they wanted from me. I understood the gravity of the situation. I tried to form thoughts into words, but nothing would come out.

What I really wanted to do was scream. Loud and shrill. Deep breath in and let it rip. Break glass with the power of my voice. 

My dad looked at me and said, “Answer them. Tell them what you want to do.”

You know what I wanted to say? “Dad, you make the choice. Mom you decided. Someone. Anyone? Make this decision for me because I don’t know what I’m doing!”

What I said was, “I don’t know.”

“You have to decide.”

“I don’t know.” 

“Just make a decision.”

I don’t know what I want to do! I need more than a few minutes to think about it. It’s kind of a big deal. What I choose to do now impacts my foreseeable future and could, potentially, dictate my survival. I can’t make that kind of decision now or ever.

I am not qualified to make decisions like this but I had to make one. All I wanted to do was scream, “I DON’T KNOW WHAT I’M DOING!”

Turns out if you have a bit of a breakdown people find time and give you space. Lots of space. Which is good because sometimes making a decision requires some alone time and a soundproof room with padded walls. You know, in case you want to scream, punch things, and throw breakable objects.

I eventually made a decision and, since we’re talking now, I can say with some confidence that the right decision was made. I didn’t die so that’s a pretty decent outcome. It’s about as much as I hoped for so…Yay.

Even though I made it through that situation, I don’t feel more prepared or capable of making decisions. Every time I’m in a situation where I’m forced to adult and make a choice, I have a mini-breakdown. It’s usually internal. Sometimes my eye twitches and my hand shakes a little. That voice, in my head, screams so loud the windows in my attic crack. My inner child rocks back and forth whimpering.

I silently chant, “Mommy. Daddy.”

I want to say, with polite panic, “I don’t know what I’m doing so you should ask my parents.”

I’m a real-life grown-up and I’ve got real-life grown-up responsibilities. It sucks. It’s horrifying. It’s like trusting Elmer Fudd with nuclear launch codes. Whose brilliant idea was this? I should not be allowed anywhere near grown-up responsibilities.

Whew, okay, deep breath in and slow it down.

Yes, somethings require immediate action. Like stopping that Fudd dude from starting world war 3. House on fire. Yep, we’ve got to make some quick decisions. There’s a time a place for quick thinking but for the majority of things we can take a minute.

A beat. A breath. Have a small freak out then shake it off and pick a direction. Take a few steps. Test it out and see how it feels. Give it a minute because it will feel unnatural and awkward. That’s perfectly normal. Another step and another. 

Look at that! We’re moving forward.

If it still feels wrong then stop. Turn around and admit in an obnoxiously loud voice: I DON’T KNOW WHAT I’M DOING! Ask for help. Seek wise counsel. Adulting isn’t a choice but how we go about it is. It’s okay to not know what to do next.

It’s okay to say we need time to think. It’s okay to admit that we don’t know what we’re doing. Admitting it means we just might meet someone who does know what they’re doing. Even if they don’t know much more than us at least we’ll have some good company’s on our journey.

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Chasing Normal

“If you’re always trying to be normal, you will never know how amazing you can be.”   Maya Angelou

Sometimes I feel like a mannequin in the window of some low rent shopping centre. This anthropomorphized doll with incredibly realistic features. People stop and stare. They squint and turn their heads to the side. They bite their lips and mutter, “So lifelike.” Then they continue their search for discounts and snacks. 

The store closes, the lights dim, and the mannequin sighs. It’s spent its whole day watching people live their lives. Silently standing sentry while dreaming of a day when it will be a real girl. It looks out the window, up at the stars, and thinks, “I wish I may, I wish I might, be normal for just one night.”

It’s the Pinocchio effect without the lie induced rhinoplasty. Poor guy, he just wanted to be a real, normal, boy. I feel your fairy tale pain little dude! I feel it deep because I too would give anything to be a real, normal, girl.

It’s tempting to pull out the old standard washing machine analogy. We’ve all heard it and checked to see if our machine has that setting. Yep, there it is: Normal. The comparison is simple, maybe a little cheep, but the desire for normal isn’t. That need to fit in is so complex and, for some people, it becomes a never-ending journey.

For a lot of us, we crave the safety of normality because we live in the margins of society. We don’t fit in or belong. We feel this overwhelming sense alienation and loneliness. We’re told our differences make us special but that doesn’t make us accepted or wanted. Try as we might, what makes us special turns us into an alien in a strange land.

Or so it feels.

I’ve said this before, but it’s something I need to remember: Feelings aren’t facts. We might feel like a little green humanoid but that doesn’t make us one. Don’t get me wrong, sometimes that feeling is justified. Some of us are just plain peculiar and that doesn’t jive with the label makers. If we don’t fit into their precious boxes than there’s no room for us anywhere.

Sometimes, however, we’re so afraid of the world around us that it’s safer to feel like we don’t belong. It hurts less to pull away and not care as much as we have in the past. It’s easier to blame others for our uncomfortable feelings than face our fears. Running away, pushing people away, is more comfortable than staying and holding on.

As someone who lives in the margins, I know that feeling very well. This need to fit in, collides with a fear of fitting in. There’s a desire to be normal that’s fighting a need to be more than ordinary. Wanting to be special but also wanting to belong and have a community. Living on the outside while looking in with jealousy and defiance.

I believe it’s called cognitive dissonance? Having opposing thoughts, feelings, and believing them to be true. Maybe the truth lies somewhere in the middle?

I’ve always been different and a little strange. If it wasn’t my illnesses pushing me to the side; it was my lack of social graces. I’m an awkward, shy, introvert. As much as I want to fit in, belong, I never do and trying has led to some awkward, gut-punching, moments. The look of surprise and an ounce of annoyance. The shake of the head. There’s a glance over the shoulder. They’re looking for a way out. It’s okay, you can walk away. I understand and it’s fine. I’m not normal, and it’s uncomfortable for everyone.

I’ve spent a lot of my life chasing normal, and I think exhaustion has triggered an embrace of isolation. I’ve been alone so long, it’s hard to tell if I’m being pushed or if I’m pulling away. It seems like the difference should be easy to spot but sometimes I don’t see it. I’m sure the clues are there but finding Waldo with a blindfold on is pretty damn impossible. 

I’m so used to being pushed, being the odd one out, that maybe I react with anticipation instead of waiting for the facts to present themselves. I see myself as weird, and peculiar so I assume others do as well. Yes, some do see my peculiarities and walk away, but there’s a chance some want to get to know me. If only I could tell the difference between the two. 

In spirit, I’ve accepted my place as the odd one out but in my heart, I crave normality. I would love to be normal and fit in somewhere. I’d give anything to belong and feel accepted. I’d give everything to feel like a real girl for just one night instead of playing tug of war. 

I think that I’m the rope. Normal pulls hard on one side and the peculiarities pull from the other end. I’m stretched as tight as I can go but neither end will concede. Who will win? The spirit of individuality or the heart of normality?

“If you’re always trying to be normal you’ll never know how amazing you can be.” Maya Angelou wasn’t wrong. When we let go of normal, we’re opening ourselves up to the extraordinary. Isn’t that what we want? It’s what I want! An extraordinary life. A single-life that lives a hundred lives is a life well-lived. It’s a life that leaves this world content and joyful.

However, being different is often very lonely and normal isn’t as solitary. Different is scary. Normal is safe. One brings a community. The other brings critics and judges. Being different is hard and normal? I don’t know if it’s any easier but, from the outside, it looks like a comfortable existence. Maybe it just has better lighting.

I’m learning to embrace my oddities and peculiarities but, on some level, I’ll always crave normality. Despite a desire to be more, to have my life count for something, the lure of normal lays in its security and community. To be normal, to me, is to be accepted. It means that I fit in somewhere, and I belong to a tribe of people. Normal is a safe place to shed a tear and relieve my burdens. It’s a well-lit room that keeps out the darkness.

I don’t think I’ll ever stop chasing that version of normal but I don’t want to get caught in its other trappings. I don’t want to be a mannequin made from a mold. I don’t want to blend in and disappear. I don’t want to be just another pretty face. I don’t want to be ordinary.

There has to be balance but how do we achieve harmony in opposing ideas? The push and pull of two halves is exhausting. Embracing them both? Can we be normal and extraordinary? 

There has to be a middle ground. A place where portions of both identities meet and unite. A safe place to be who we’re meant to be without the labels, boxes, and judges. A sacred ground where we can make peace with all sides of our personalities and leave feeling whole. It’s this place where normality can become something truly extraordinary.

You’ve heard my definition of normal. I’m curious, how do you define normal? What does it mean to you? Let me know, down in the comments. Have a great week!

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What Does It Feel Like?

Mental illness is hard to understand if you’ve never struggled with it. It’s even harder to explain when you’re in the middle of the darkness. I’ve spent a lot of time trying to find a way to explain what it feels like to fight a mental illness. Friends, family, have asked but I haven’t been successful. Putting words to overwhelming feelings feels impossible, but I’m going to try my best. 

Please know, I can only speak for my experience with depression, anxiety, and CPTSD (complex post-traumatic stress disorder). I can tell you how I experience it and what it does to my body but we’re all different. Our experiences, our triggers, the way our bodies respond are uniquely ours. Please don’t take my experience as the golden rule. One size does fit all.

When my gremlin is awake, I feel an overwhelming sense of grief, fear, and dread. I’m depressed but it’s more than sadness. My anxiety is more than worry. It isn’t just a feeling or an emotion. It’s a full-body experience. It’s an exhaustion that makes my bones ache and my muscles cramp. There’s a weight sitting on my chest and it feels like my lungs are being compressed. I feel like I’m choking. I can’t breathe. I feel like I’m dying. My whole body hurts.

I just want to lay down and switch off because I don’t have the energy to think of anything other than the pain. I look for distractions. Something to take my mind off of this aching in my heart. I’ll put on my headphones and crank my music as loud as I can. If I can drown it out it then won’t hurt as much. It works for a little while, but the gremlin is resilient and adaptive.

If I don’t switch up my tricks then it’ll catch on and I’ll lose the high ground. When the music stops, I binge watch youtube videos or watch every episode of Doctor Who on Netflix. I just want to kill the hours between sun up and sunset but I dread the darkness. With the moon, comes the silence and silence is where the gremlin lives.

I’m so tired, and all I want to do is sleep. It’s the only time I don’t feel like this thing is kicking me in the gut. Sleep keeps the swirling darkness from taking over. It dulls the overwhelming hopelessness. It mutes the voice screaming, “Screw it! What’s the point?” 

But sleep is hard to come by because my mind is spinning too fast. It’s looking for something to latch onto. A stray thought or memory. Something I regret or dread. A stupid comment or a mistake. It’s looking for anything it can use as a weapon and when it finds something, it opens fire. Thoughts. Feelings. Fears. They come hard and fast. It drives every horrible experience into raw nerves and it burns deep.

The dark, with the growling silence, brings a worthlessness that’s so pervasive it physically hurts. It’s a noose around my neck. An invisible force cutting off my breath and it feels like I’m going to explode. Pain dances through my head, down my neck, and along my shoulders. Cramping. Spasming. A jolt of electricity. 

I want to cry, scream, punch something but again the gremlin growls and the darkness says, “Screw it! What’s the point?” Crying won’t make it feel better. I could scream, but no one will hear me. I could punch something, but what good would it do? I’ll just hurt my hand, and the gremlin will laugh. That little bastard doesn’t need more ammunition. It has plenty to hit me with all ready:

Everything I’ve tried has failed: “You’re pathetic.”

I’ve done things I regret, things I’m ashamed of, and said things I’d give anything to take back: “You deserve this pain.”

I’m short, square, and sometimes I walk with a limp: “Lookat you! Who could love you? You’re nothing.”

Then there’s a voice that whispers so softly I can only hear it at two am when I can’t escape the silence. It’s there all the time, I can feel it, but I can usually ignore it. When the sun’s up there are too many distractions and I can play pretend. 

The sun will set, exhaustion will win out, and I can’t ignore it any longer. I’ll close my computer, turn off the tv, and make sure my home is locked uptight. I’ll go to the bathroom, grab my toothbrush, and look at my self in the mirror. That’s when it starts. It’s ready to be heard.

It’s not a right hook to the jaw or a slap across the face. It doesn’t go straight for the laundry list of imperfections and mistakes. It doesn’t throw my failures at my face like daggers. It’s subtle. Almost gentle. Kind but in a cruel way.

It starts with a simple statement: “You made it through another day.”

Benign. Encouraging. Caring?

Yes, I made it through another day. Yeah me?

Then it cranks it up a notch: “Well, you could be dead right now you know.”

I’m aware of that but thanks for the reminder.

“One could argue that you should be dead right now.”

Ah, there it is! The slow turn. The happy clown peels off its mask.

“Why aren’t you dead yet?”

There’s a stumper. I’ve don’t know how to answer that one.

“You could you know.”

Its smiling eyes turn grey and cold. It waits for me to ask, but I don’t want to play its game. This isn’t a game I can win. You can’t beat a cheater or a liar.

Tired of waiting for me to take the bait, it takes charge. It has me where it wants me. I can’t escape. How can I escape my own mind?

Ah, there it is. The laughter. The glee. I asked the question and it has the answer. “Die.”

No. I can’t.

“Yes, you can.”

I don’t want to hurt them. I don’t want to hurt my family.

“Oh, they’ll be better off without you.”

Liar.

“How much time, money, and energy have they wasted on you?”

I don’t know.

“I’ve done the math.”

Shut up. Shut up. Shut up.

There’s a stretch of silence. Five minutes. Five hours. It backs off for a while because the game just gets better the longer it goes on. It’ll drag it out until I drop my guard and then the same old gremlin will return. It’ll fill the silence but, for now, I’ll try to get some sleep. 

I love sleeping. I love to dream. In bed at night or just walking around during the day. Slipping off into that dream world feels so good. So free. So calm. It’s lighter. The air is cleaner. In my dreams, that’s where I find my moments of peace.

But the voice comes back for a second, third, fourth round. Each time it takes another track and tries another trick. Some shots go wide and others are easily deflected. Some hit the mark and my defenses weaken.

“How many people have you watched die?

I don’t know.

“One? Five? Ten? One Hundred?”

I stopped counting.

“Were they good people?”

They were my friends. I’d call some of them family. Yeah, they were great people.

“Better than you?”

Maybe. Probably.

“Then how come they’re gone and you’re still here?”

I have no answer to that one. The friends I’ve buried were incredible human beings. Kind. Loving. Brilliant beyond words. Most were too young to die. Kids. Babies. They never got a chance to live but here I am. Alive. 

A few years ago I lost a friend who was more like a sister. We grew up together inside the sterile walls of BC’s Children’s Hospital. We fought renal failure together. Laughed together. Played together. We used our dialysis lines as swords and pretended we were knights of the round table. She was the one person who understood what living with a chronic illness felt like. She knew the toll it takes on the mind and body. She was the one person I could talk to about this because she got it. God, I miss her so much!

Kidney disease took her away just like it’s taken so many others. She didn’t deserve it. She deserved a second, third, even a hundredth chance to live the life she wanted. They all did. They all deserved so much better.

She’s gone. They’re all gone. I’m still here.

God forgive me, but that voice makes a tempting offer. When it says that it would be so much easier to just give in; it’s not wrong. It’s not a lie. It would be so much easier. It would be easier for me to just let go.

I get so tired of living in this broken body and living this life. Maybe that’s why I like to sleep and why getting lost in a daydream just feels so damn good. Fighting is exhausting. It’s hard, and I’ll never live a life that isn’t a constant battle. That thought alone is defeating.

Giving in? Letting go? I understand why some people do it. I get it. I feel it. Respect it? I don’t know if I’d go that far. It creates a cycle of pain and suffering that, to me, seems too cruel. I don’t want to lay that burden on someone else. I just can’t do that to the people I love.

But I get it. I feel the temptation more often than I care to admit. I just can’t do it.

Besides, I’ve been doing this long enough to know that, no matter how horrible I feel at this moment, this moment won’t last forever. This feeling, these thoughts, that voice will go quiet. They won’t be gone. I don’t know if I’ll ever be lucky enough to have some better angels drown out my gremlin.

However, there will be a moment of peace. I’ll get a brief reprieve at some point. I will be able to breathe, smile, laugh again. The pain will take off its dancing shoes and rest for a little while. Sleep will go back to being a simple necessity rather than an escape. The good things, the beauty in the real world, will replace the hours wasted away in my dreams. 

I’ll get a day, week, month or maybe even two. The gremlin will get tired, it will need to rest, so all I have to do is hold on. All I have to do is fight. No matter how tired I am I have to fight back against the gremlins voice because I did get a second chance. I am alive. 

I’d love to know why I’m still alive but I can live without knowing. I don’t need to be better than those that were taken. I just need to breath. I just need to hold on. I just need to make this moment count for something. 

This beat. This breath. This chance. It belongs to me because I am alive and, God willing, that will be enough. I am enough. I just need to hold on. Hold on and wait for a few better angels.

If the fight is getting too hard and you feel like giving up; Please call your local suicide hotline, call emergency services, or take yourself to the hospital. You’re worth the fight and there are good people who will fight along side you. Don’t give up. Please, hold on. You’re not alone!

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Only A Squirrel Can Save Us Now!

“Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world.” ― Desmond Tutu

I wonder, if we stand on our heads will the world be the right way up? If we close our eyes, will we see more clearly? If we hold our breath, will our hearts do the talking? If we dare to dream, will our reality make more sense? If we let ourselves fall, will we find our feet?

I’m in a bit of a mood.

I’m frustrated with a lot of things right now. My life isn’t where I want it and I’m not sure how to get it there. Writing is hard, and I’m struggling to put these words down in an order that will make sense. All I want to do, at this moment, is quit trying and go watch Youtube for the next fifteen hours. I could do it. Who would care? Who’s going to read this anyway? 

Okay, yeah, I caught that one too. Self-pity just crept in for a second. I’m shaking it off and taking a deep breath. If you’re reading this, thanks for sticking with me through this moody writers’ block. I’ve said this before, but you all mean the world to me. Even more so when I’m in this kinda funk.

I’m aggravated by life so, naturally, I turned on the news to make it all better. I watched grown-ups use the doo-doo head offensive in the hallowed halls of politics. Saw babies caged like animals. Civilians are running away from soldiers and militarized police, in my own country, are arresting innocent people on their own land. Land that is constitutionally protected.

Racism in Canada? You betcha! Why? Somethings I’ll never understand.

I watched in horror and defeat because I feel helpless. Life has a lot of grey areas, but some things are just wrong. What’s happening out there? The things I’m seeing on the news? The things we’re doing to each other? The hate we have for each other? It’s just wrong.

After watching the news, I went to twitter to see what people had to say because, surely, rational thought will prevail. Yeah, that’ll cheer me up and inspire me to write something uplifting. It will come as no surprise that rational thought was hard to find and my frustration wasn’t alleviated. The only thing I got out of this reckless exercise in emotional self-destruction was a headache and a deep sense of fearful apprehension.

The world feels like it has turned itself backward, upside down, and out of focus. Madness is seen as reason. Wrong is right. Injustice is sought after while justice is locked away in a cell. We’re told that facts are fiction and fiction is fact. Innocent people are arrested or fired for speaking truth to power. Truth, it seems, is in the eyes of the beholder and, as long as don’t make eye contact, who the hell cares?

Do I even have to ask what the world is coming too?

The real frustration is knowing that we’re all capable of doing so much better but we don’t. There was a trending story, awhile back, that read, “Faith In Humanity Restored.” Someone did something so unexpected it broke the internet. They, wait for it, were kind. They were compassionate. They helped someone who needed it. When did kindness become so rare, it trends worldwide?

We’re all so much better than this, aren’t we? We all have compassion, kindness, and decency inside of us and it wants to run free. Despite all the evil we see, we’re strong enough to defeat it, and we don’t have to clench our fists to do it. So why don’t we just do it? How hard is it to be nice?

Anger is easy and kindness is hard. Compassion requires vulnerability and looking away requires none. Decency should be the easiest of the three, but it still requires some personal sacrifice and who wants to sacrifice anything at all? All three ask us to open our hearts just a crack and let ourselves connect with someone who is so seemingly different. They ask us to look past our fear, our bigotries, and see the human being standing in front of us.

Compassion, kindness, and decency ask us to consider the possibility that the differences we see are covering the things that make us so alike. Who someone loves isn’t important. That fact that they love is so valuable. How someone prays? A walk of faith, no matter the name, is a journey we can take together if we just let ourselves walk it, together. Where someone was born? The colour of their skin? We all hope, dream, and desire a day that’s better than today. Our similarities are so rich, complex, and magical but all we focus on is a dime-store card trick. 

I look at the world, the pain so many people are feeling, and I feel helpless. I can’t take your pain away. I can’t unlock those cages or give back the land. It breaks my heart. It’s so easy to let that helplessness turn into hopelessness. When that happens, apathy sets in and I turn away. The second I turn away, I become a part of the problem and without every single one of us, will there ever be a solution?

I was on a hike yesterday and there was this four-year-old walking with his dad. He was fussing and crying. His dad stopped, pulled him to the side to comfort him, but before he could say anything, the boy started laughing. It was a full-body giggle with a joyful squeal. He started jumping up and down. He was so excited and so happy, his whole body shook. He pointed and clapped his hands then squealed in delight. What made him so happy? It was a squirrel, sitting on a log, nibbling on a piece of wood. 

It was so innocent, simple, and pure. He was crying, upset, and frustrated but the problem was solved by something so small. When did we give up that innocence? When did we stop seeing the simple wonders of the world? When did we complicate our lives so much they reached the breaking point? When did I let myself turn away from the simple things? I envy that kid, and I wish our problems could be solved so easily.

I know the problems we face aren’t solved by a squirrel but the solution, or our contribution to it, can be something that small and simple. We can’t let frustration stop us from being kind. We don’t have to let our differences become the only thing we see. We don’t have to engage in the hate. We don’t have to let apathy turn us cold. We can engage in small acts of service, compassion, and decency. Most of all, never underestimate the small things because they can make a lifesaving difference in someone’s world.

One life saved might not save the whole world, but it saves us from hopelessness because we did something. We didn’t sit back and watch helplessly. We didn’t turn away because it was too hard to see what they were going through. We had the courage to do the right thing and show someone kindness. The world needs us to have the courage of kindness.

Please, my dear friends, be kind to each other.

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How do You Say Goodbye?

What if there was a way to cure your disease? It’s a simple procedure. A minimally invasive surgery. There’s no financial burden and the risks are relatively low. Recovery time isn’t that long. You could be back to your normal routine in a couple of weeks. One procedure to cure an illness that’s been threatening your life for decades. Would you do it?

Is the answer bursting to get out or is there an uneasy feeling in your stomach? Are there tears in your eyes? Are they joyful or fearful? Is there a bubble of excitement ready to erupt or is that dread? Can you tell the difference?

Last year I decided to see a new cardiologist because it was time for a new set of eyes. The first visit was fairly straight forward. If you’ve seen one specialist, you’ve seen them all. He took my medical history and did a quick exam. It was routine until he started asking more in-depth questions about my kidneys and what renal failure did to my heart. 

I have an arrhythmia called ventricle tachycardia (VTAC) and premature ventricle contractions (PVCs). Sometimes my heart beats way too fast and sometimes it throws in an extra beat for the hell of it. Think of it like a bowl full of jello. Shake it up and watch it wobble. That’s what it feels like when my heart goes into VTAC. It’s beating so fast it’s impairing blood flow to my brain and body. My eyesight goes, my arms and legs get heavy, and my hands get cold. It feels like I’m being pulled out of my body then snapped back into it. It’s a terrifying feeling and I’m conscious for all of it. 

VTAC is a serious, life-threatening, rhythm that can lead to cardiac arrest if it isn’t treated. Those times I’ve been clinically dead? This is what caused it. My heart was beating too fast, for too long, and it got tired. A tired heart will eventually need a break and that leads to a grim outcome.

I was diagnosed with VTAC when I was sixteen. I’ve lived with it for over half my life. Managing the condition has been my only option. I take medication, watch what I eat, and work out. I don’t drink coffee and limit salt intake. I give my heart a fighting chance and hope that it holds up. There’s never been a cure so I just got used to having a malfunctioning heart.

The good news is, as long as my transplanted kidney is working, the rhythm doesn’t come out to play that often. I’ll feel it quiver a couple of times a day, but it hasn’t reached crisis level in years. My hands will get a little bit cold and sometimes I get a little dizzy. Usually, it’s a bother more than a problem. Sometimes though, it’s a bit more aggressive and I have to rest until it settles back down. It’s a potentially life-threatening nuisance but what can I do? Medically, not a hell of a lot.

Then I met this new cardiologist, and he asked a question no one else had: Why is the arrhythmia still around? We know what caused it but the cause, kidney failure, has been treated with a transplant. My blood levels are normal, and my heart looks healthy. All the tests show that my heart is in better shape than it should be. Given everything its been through, there should be more damage but there’s isn’t. It’s healthy, so this arrhythmia shouldn’t be here anymore but it is. Why?

It seems like an obvious question, right? When we stop and think about it, it’s the most logical thing to ask, but no one did. In the decades since my diagnosis, no one has thought to dig deeper. To be fair, I love fairness, at the time the answer didn’t matter. There was nothing they could do to fix it so keeping it under control was the only option. Now? Science! Don’t be afraid of it. It’s a beautiful thing.

After months of testing, the doctors think they have a way to fix my heart. The problem isn’t structural. All the tests show the framework and plumbing are working as they should. The problem is electrical. The wires have gotten crossed, and they’re sending faulty signals. If we can pinpoint the fault then we can cut the fuse. We just have to figure out where the fault lies which is a bit problematic. As my electrophysiologist said, “Your physiology is an enigma wrapped in a mystery.”

It’s not a straight shot across the finish line and there are a lot of hurdles in the way. They’ve told me that I shouldn’t get my hopes up too high. Don’t worry Doc. When it comes to my body and health, hope is pretty tempered. I’ve been playing this game for a very long time. For me, hope is dished out in small portions. I’ve gotta keep some in reserve if i’m going to handle the disappointments.

The mere chance of a cure, the thought alone, is invigorating but there’s another emotion that I never expected. One that has me perplexed. I’ve always thought that I would jump at a cure for all of my medical conditions. I thought it would be a relief and a celebration. A cure? A chance to be healthy. A chance to live without a ticking time bomb inside of me. A chance to be a little more normal.

Why wouldn’t I jump at that?

I left the doctors appointment feeling hesitant. It’s not the procedure or the potential for disappointment. I’ve had surgeries more complicated and more dangerous than this one. The fear of my mortality has been dulled. Death doesn’t scare me anymore. I’m ready to go because I’ve all ready been. It was a place of peace, love, wholeness. That place, let’s call it heaven, was perfection. So, the surgery doesn’t frighten me, and the risks don’t bother me. So, what is bothering me?

This is going to sound strange, and I’m not sure I understand it either. I’m struggling to find a way to explain it. Crazy isn’t a word I like to use but it might be an appropriate description . I’m trying to make sense of these feelings, but I’m not going to do a good job. I apologize if my words are jumbled but they match my thoughts perfectly.

The idea of a cure, as far away as it is, brings a feeling of emptiness. I feel like I would be giving up a piece of myself. This fault in my wiring has been a part of my story for so long that getting rid of it means my story ends. I know that’s wrong. It would end one chapter and pave the way for the next one to start. However, it’s become so intertwined with my identity that I don’t know if I can get rid of it. Getting rid of it, as bizarre as it sounds, feels like I’m killing off a part of what makes me, me. 

Does that make sense or have I completely lost my mind? My sanity has been walking a tight rope for quite some time. Tipping off wouldn’t be beyond reason. I feel like I’m standing on this rope and my legs are starting to shake. I have to choose to go forward or back but my legs are trembling. Falling off the edge is a fifty-fifty shot.

The decision to have the procedure isn’t a toss of a coin. When, or if, the moment comes, I’m sure that I’ll choose to have the surgery. I can’t see myself saying no because of some misplaced sense of self. Having one less thing to worry about, one less thing holding me back, will be a relief. I’ll thank God and medicine for this miracle of science. That moment will come, but I think there will also be a period of mourning.

Saying goodbye is hard to do even when we’re saying goodbye to something that’s doing us harm. That’s especially true when it’s become a part of our identity. I’m sure it’s even harder when its an identity placed on us by others. In my case, I’m not sure when my illnesses became my identifier. I’m not sure if it’s self-imposed or if it’s something others have placed on me. A bit of both? I’m not sure where my illness ends and where I begin. So, I suppose that means I don’t know who I’ll be after I say good-bye.

The thought of losing a part of my identity is terrifying. I feel a little lonelier, more vulnerable, and a bit exposed. Like a piece of my armour is falling off mid-battle. If I lose this one piece of me, who will I be with it gone? What will my life look like then? Will everything change? What if nothing changes? 

I’m scared of saying good-bye because I don’t know what I’m saying hello too. For the first time, in a lifetime, I’ll be venturing into uncharted territory without one of my companions. I know what it means to be sick. I know what’s expected of me when I’m ill. I’ve walked this path a very long time but now it might be time to forge a new path. It might be time to leave this thing behind and carry on alone. Though, I think I’ll look back with a little sadness. I’ll miss the journey we’ve taken together and the identity we’ve forged. I’ll grieve the loss because it will, in a strange way, be a loss.

Then again, not all losses are bad and sometimes grief gives us room to grow. This could be a chance to try on some new identities. Play around with my identifiers and explore sides of myself that I don’t know exist. How often do we get a chance to do that? How often do we give ourselves the chance to write a new chapter in our story?

It’s a thought, a possibility, that’s both terrifying and exciting.

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Things That Go Bump In The Night

“There’s no shame in fear, my father told me, what matters is how we face it.”  – George R.R. Martin, A Clash of Kings

There’s a lot to be afraid of right now. World leaders are trying to start wars. An entire country is on fire. A virus is spreading faster than scientists can find a cure. Our earth’s climate is changing, and we’re busy arguing over money and ideology. Hate crimes are on the rise. Nuclear threats coming in so fast we don’t know if they’re real or a game. Death tolls and crime rates hit us before we’ve had our breakfast.

The list of things that go bump in the night is frightfully long, and it just keeps getting longer. Every day there’s something new. Every week we say it can’t get any worse. Monday rolls around and there it is! We didn’t see that coming did we? It’s a lot and fear is a natural response.

I’m a worrier by nature and I have a finely tuned startle response. I live in a constant state of hyper-vigilance. Kinda like a Ninja? Sure, except I run, hide, and cry for my mommy. That’s an exaggeration…Mostly. I wouldn’t say I’m a coward but my sense of self-preservation is one with the force. I’m ready for anything. Prepared for danger. A hidey-hole in every corner. Okay, I’m a bag of freeze-dried treats away from being a prepper.

For the first few years of my life, I lived in a country where fear wasn’t an emotion. It was a way of life, and we didn’t even know it. It was ordinary. A typical part of a pretty basic day. It was so normal that I didn’t know how afraid I was until we immigrated to Canada. It wasn’t until I experienced another way of life, that I realized what life I had been living.

In school, I was taught what to do when I was sexually assaulted. It wasn’t a matter of if it would happen. It was assumed it would because assaults were so common. Even as little kids, four and five years old, it was a reality that we had to accept and prepare to face. So my first experience with sex ed was a rape survival class. In Canada? We put condoms on bananas in sixth grade. How’s that for culture clash?

At home, we were taught about home invasions and carjackings. There were bars on our windows and a metal gate seperated the sleeping quarters form the rest of the house. My brother and I learnt how to hide in our special spot. We were told to stay there no matter what happened. No matter how loud the screams or how long the silenced stretched on, we had to stay hidden. We could come out for our grandparents and the police but only if we saw the badges.

Going to the mall meant passing through a security checkpoint. It was kinda like going through airport security except these mall cops wore military-style uniforms and carried assault weapons. A shopping trip came with its own set of lessons. How to find an escape root? Where to hide? What do you do if someone starts shooting or a bomb goes off? We prepared for the worst and hoped for the best.

Saying this now, from my home in Canada, it seems so bizarre. How did we live like that and not know we were afraid? How did the fear become so normal? When did it become so commonplace?

Fear, for me, didn’t start with a bang but a whimper. It wasn’t a big act of violence but rather, it was a slow burn. It crept in under the cover of darkness and became a silent squatter in the attic. It was so subtle, so quiet, I didn’t know it had made a home for itself.

After I being sick for so long, the fear grew stronger and louder. It became a master illusionist. It turned caution into a beachside paradise that felt warm and safe. It was a lie, a mirage created to make fear feel rational and reasoned. After all, I can run from gunshots and hide from monsters. I can’t run from an illness that’s trying to kill me, and I can’t hide from the monster that’s inside of me. 

Fear becomes a matter of survival or so it seems.

Being afraid is a normal response to a terrifying situation but when it becomes as comfortable as an old sweatshirt? When we can slip it on without thought or hesitation? That’s when fear becomes the toxic friend we hate but one we’ve learned to love and rely on.

If we let it, fear will consume every second of the day and every beat of our heart. It’s so easy to let it run wild because fighting takes so much energy. Hiding is easier than running. Closing our eyes is easier than staring the monster in the face. It’s just easier to feel it than deal with it so the monster lives in comfort and luxury.

Small fears grow into full-blown paranoia faster than we can take a deep breath. We start building bunkers and walls. We buy hazmat suits and N95 masks. We turn away from hard science, proven facts, and listen to the fast-talking salesmen with quick fixes. We blame others for what’s wrong. We go after the people who look different or act differently because we’re too afraid to deal with the monster inside of us. We go after them because it’s easier to blame them than face what really scares us.

There are real things in this world, our own lives, to fear. If we’re paying attention to what’s going on then, we see it and feel it. We can’t pretend that life isn’t scary, and we shouldn’t. Sticking our heads in the sand won’t solve the problem any more than letting the problem consume us, will make it end.

I know fear. I live with fear every day. Sometimes it makes small things seem so much bigger. Other times it makes big things seem insurmountable. These are both lies. I can’t control the fearful things, but I do control my response. I can choose to run, hide, and call my mommy. I can also choose to stand up, face it down, and deal with the situation. I can blame others for my problems or own the problems that are mine. That control is mine and mine alone. 

So, with everything out there causing a world of fear, here’s what I’m not going to do: I won’t be so afraid of another culture, country, skin colour, religion, or gender identity that I let racism and bigotry become my default setting. I won’t hate you because you disagree with me. I won’t let fear turn to hate and I won’t let it turn my heart cold. 

What I will do? I’ll do my best to turn my fear into compassion and empathy. I’ll try to treat those around me with the same understanding and patience that I need. I’ll try my damndest to live by the golden rule and treat you the way I want to be treated. No matter how hard it is, I’ll try my best to choose kindness over fear and hate.

By all means, call me a bleeding heart if you like. It’s fair. My heart’s taken a lot of hits. It’s pretty bruised and I’m sure there’s a few open wounds as well. However, if my heart bleeds then I know it hasn’t turned to stone. I know that fear hasn’t won yet. It, God willing, gives me the courage I need to make sure fear never wins. It makes sure that I choose kindness, compassion, and I strive for understanding. 

That’s how I choose to face the things that go bump in the night. What about you?

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Is It A Stupid Question?

When we’re kids, we’re told that there’s no such thing as a stupid question. Asking questions is how we learn, grow, and connect with the people around us. We’re encouraged and rewarded for our inquisitiveness. I’ve even heard people say that it’s a sign of intelligence. The more curious we are, the further we go in life. I don’t know if that’s true, but it doesn’t hurt to ask. 

We’re curious, we ask questions, but then something bad happens to us. An accident, an illness, an act of violence or loss. What happens to our curiosity then? Well, we ask the obvious question: Why me? Why did this happen to me? I don’t understand why. Can someone tell me why?

This is when we discover that there is, in fact, a question we should never ask. 

When I was three, I was diagnosed with chronic renal failure. There was an act of, what doctors call, medical misadventure and my kidneys were damaged. There was nothing we could do but wait for them to shut down and pray that didn’t happen for a very long time.

As soon as puberty hit, my renal function plummeted. I went on dialysis, and we began the workup for a kidney transplant. The next seven years were excruciating. Countless surgeries, tests, needles, a couple of transplants and one that failed. I want to give you more details, but my memories are scattered. Everything hurt so much! I must’ve blocked most of it out. A lot of the details are gone, or I don’t want to remember.

I do remember the friends who lost the battle. Their bodies were too small. This disease was too big. They tried so hard to fight but the fight was insurmountable. Those losses were hard but when I think of these friends I don’t remember their scars. I remember their smiling faces. The way they laughed. The games we played. The hugs we shared and the time we spent together. I remember them with a heart full of love and longing.

I remember dying and being sent back to a broken body. 

I remember the prayers and the cards wishing me well.

I remember the phone call that saved my life, and I remember the person who’s life ended so I could live. We don’t know his name or his story but we know he was generous and kind. We know that the people who loved him were heroes. I’ll always remember him and what he gave me.

Years later, struggling to process everything I went through and all of those losses, I dared to ask, “Why me?”

The response was, “Why not you? You want someone else to go through all that?”

What? No! Of course not! I wouldn’t wish this on anyone else. I wish none of this happened to any of us! Kyle, Jacob, Jen, and a dozen others. They lost their lives to this damn disease. I wish they were still here. I wish I could see them smile and play silly games. They didn’t deserve what happened to them anymore than I did.

Then why not you? Because it hurt! Because I don’t want to hurt anymore. Because it sucks. Because…I don’t know why it happened to me!

If we ask, we’re told that the question is selfish. We’re told that it’s a sign of weakness. We’re told to stop the pity party and buck up. They tell us that, “At least it didn’t happen to someone you love.”

Me too! I’m so happy this didn’t happen to my parents, brother, family, and friends. But it did happen to me and, God, it sucks.

When bad things happen to you, it doesn’t mean it won’t happen to me. Life isn’t a horribly cut pie. I might get a bigger slice, but you won’t miss out. There’s enough to go around which is why we all have a story to tell. We have our ghosts and our scars. We cry and ask: Why me? Why did I get this slice of that pie?

Asking that question isn’t a pity party but a cry of grief, frustration, and pain. We’re reaching out for comfort. We’re trying to make sense of the senseless. We’re trying to restore some semblance of order amid chaos. We’re hurting, and we need to vent because holding it in multiples the pain tenfold.

Why not you?

That question kills the conversation and shuts a door that’s very hard to reopen. Pain, shame, and guilt glue the hinges. It silences a voice that, for a brief moment, found enough strength to speak up. Instead of holding the grief in, for the sake of stoicism, we let it out and we reached out. The attempt may have been clumsy, but it was still courageous.

We asked the question but the question isn’t about the answer. It’s about the weight of our emotions. It’s a hand in need of holding. It’s about companionship, friendship, and compassion. It’s a need to be seen and heard. It’s about grieving with a trusted friend. It’s a cry for help, not a question looking for answers.

We can’t answer the unanswerable question. No one knows why we suffer only that we do. There’s nothing we can say that will ease the pain. Nothing we say will satisfy curiosity because suffering is beyond human understanding. Words, as much power as they have, can’t solve a problem that’s plagued humanity for thousands of years.

Why me?

I don’t know but I’m sorry you’re going through hell right now. It sucks, it’s messed up, and I’d do anything to make it stop. I can’t do that, but I can be here for you. There’s a shoulder to cry on and a hand to hold. When life gets too heavy, lean on me and I’ll hold you up. Need a laugh? Need some food? Need some company? What do you need?

That’s the response I need when I’m at my lowest because asking that question comes when life has me on my knees. When I’m good, I’m strong and don’t need to ask. When I’m weak? When I’m broken? When the tears won’t stop? That’s when I need a friend who’ll listen.

Don’t shut down a cry for help from someone else and, just as importantly, don’t shut yourself down. When we ask ourselves that question, be kind. Recognize it for what it is and give an ounce of grace. We’re struggling. We’re in pain. Life is hard. We all have too much to carry. I don’t know about you, but I’m getting kinda tired.

When our memories overwhelm us or we’re trying to put them back together; remember that there is no such thing as a stupid question. Sometimes our questions are a pain response. Sometimes they’re a cry for help. Sometimes we need to ask so we can heal and move on.

Thank-you Ruby! Your comment inspired this post. I read your comments and they mean a lot so leave your thoughts down below. Like, subscribe, and I’ll see you next week. 

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The Rewired Brain

“Did you know? You can ‘REWIRE’ your brain to be happy by simply recalling 3 things you’re grateful for everyday for 21 days.” – Unknown

I saw this quote floating around online, and it irked me. There’s nothing overtly wrong with it. It’s a nice sentiment. The words come from a desire to help people live a better life. Live a happier life! Who doesn’t want to be happier? Yeah, that would be a welcome change.

If there’s nothing wrong with the words then why is it bothering me? I’ve been turning it over and over trying to figure it out. I’m irked but not upset. Bothered but not angry. Annoyed, sure, but why? Why can’t I just let it go and keep scrolling?

Let me be clear about one thing: This is a “me problem.” It has nothing to do with the people that reposted the quote. They weren’t trying to stir up trouble or start a controversy. They weren’t being insensitive. They read the quote, it sounded good, so they hit share. We’ve all posted platitudes without diving below the surface. We’ve all hit share without a second thought. We read some pretty words and we hit the button. It’s that simple.

I’m not calling anyone out, and I’m not upset. I’m simply irked, and I’ve been trying to figure out why. These words hit a raw nerve but why? Why have I been turning them over in my mind? Why is it bothering me so much? It’s just a platitude. A pretty little sentiment wrapped up in a bow. A simple sentence that offers a map to the promised land. 

So simple. So easy. So quick.

Wait a second. There it is! A simple solution for a complex issue. Change your life in 21 days. Three easy steps to a new you. It’s so simple anyone can do it. What’s the problem with that? These nice sentiments walk along the same path that snake oil slithers. They offer quick fixes that boil our pain down until it sounds like trivia at a bingo hall. They leave us feeling dismissed, unseen, blamed, and invalidated.

I’ve heard so many different cures and they’ve all come from well-meaning souls. I’ve been told to put on a sweater if I want to cure my kidney disease. Go for a walk to cure my depression. Pray more. Pray harder. Eat more greens. Drink green tea. Just put a little makeup on and dress a little nicer. List three things you’re grateful for and your brain will be rewired.

The sweater thing was just silly but going for a walk can help ease the symptoms of depression. Fresh air, sun on my skin, looking at natural beauty does me a world of good. What it won’t do? It won’t cure a major depressive episode because I physically can’t get out of bed. What about prayer? I believe in prayer. It’s something I do every day. It’s the one place I can be completely honest and open. It’s my one safe place but my brain and body are still damaged. It hasn’t cured me. Eating healthier, putting on clean clothes, and making myself feel pretty? Yes, it can boost my mood but a cure-all?

There’s a grain of truth in many of these remedies, and they can help ease the symptoms. Gratitude, for example, is an excellent way to refocus our attention. Depression blocks out the joy and all we see are the negative things in our lives. Taking five minutes to look for something good? Yes, it’s a tool that can combat the illness but will it rewire my brain? 

I’ve been doing a gratitude list every day for over a year. I don’t have a magic number. I just go until I can’t think of anything else. It has helped relieve some of the pressure, but my anxiety disorder is screaming at me right now and depression is trying to drag me down. I’ve been in a slump for over a month. I’ve been struggling but every day I list everything I’m grateful for because it takes the edge off. 

It gives me a moment’s peace, but it hasn’t rewired my mind. My gremlin is still right a home in my brain. I’m fighting to hang on, and I use every tool at my disposal. I go for walks, pray, and I try to remind myself of the good things in my life. They keep the darkness from taking over, but they haven’t cured my illnesses or written a new story over old scars.

Try as we might, trivializing our suffering with pretty words won’t fix the cause of our pain. There’s no magic cure and, yes, I wish there was. I wish there was a quick way to make my heart hurt less and the panic rise a little slower. I’d give anything to make it all go away but the only way out is through.

The first step in healing is admitting we’ve been hurt. Acknowledge the pain we feel, give it a name, and then walk the long, hard, road of recovery. Long walks, prayer, positive thoughts, maybe even a cup of tea can aid our journey. They offer support, guidance, and comfort but they won’t magically cure a damaged mind. That takes compassion, understanding, time and maybe some professional help. Most of all, it takes courage to keep fighting when every cell in our bodies are begging us to quit. 

If no one else has said this to you, let me be the first. Your pain is valid. You’re seen. Most of all, you aren’t alone.

I usually have an inspiration quote on my Monday post so I’ll leave you with something Winston Churchill said, “It is the courage to continue that counts.”

Thanks for reading. Please leave me your thoughts. Like, susbcribe, and I’ll see you Friday. Have an amazing week!

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Because We Dared To Sit

Ah, public transportation. Buses. Trains. The uncomfortable chairs coated in a sticky substance. That smell! I just don’t want to know what it is. There’s the suffocating press of bodies squeezed together. A quiet exchange of sweat that, in any other circumstance, would be disgusting. The long lines and a schedule that’s loosely based on our current understanding of time, space, and relative dimensions.

It is convenient, I’ll give it that, and it’s good for the environment. I’m not a scientist, obviously, but I do know that things with engines are bad for the stuff we inhale. Driving less means we die slower? Either way, saving what’s left of this little plant is a good idea because mars looks dusty and, you know, allergies.

I’m all for recycling, sustainability, and reducing foots prints on places. I consider myself a green person. I’m all for the three R’s. Where are my green people at? Whoop! Public transportation though? Uh, well, I just…You know what it is? I…Um… How do I say this? Uh, I don’t like it.

I can tolerate the creepy guy sitting way in the back. His bag placed strategically over his lap. The volume on his earphones cranked a little too loud. His breathing grows heavier. The bag bounces rhythmically. You’re not fooling anyone! We all know what you’re doing and, you know what, do you booboo. No one likes to wake up early and we’ve all gotta get ourselves motivated somehow. Most of us drink coffee but I guess your way works too, I guess.

The other man, old enough to be my grandfather, reaching for the handhold and oops, his hand slips. It lands somewhere inappropriate. He smiles, shrugs, apologizes, while storing that moment away for later. Maybe the train ride home? You’re nasty. I’m not interested. Do it again, and my elbow will connect with your oopsy. 

What the hell’s an oopsy?

Okay, it’s not all bad. Public transportation has some positive attributes. It beats sitting in rush hour traffic for three hours. It’s gotta be better than trying to find a parking spot that doesn’t cost more than my car. It’s better than driving twenty minutes out of the way because road work takes up four city blocks. When world leaders are in town for some sort of summit?

Yay public transportation!

No, I’m not trading in my car keys for a bus pass. Also, I’m not placing the blame on creepy men, bad odours, and sticky seats. Here’s the thing about buses, trains, and all the rest: They terrify me. Why? Thanks for asking! You’re very kind and considerate. That’s what I like about you.

My chronic illness has left me with some mobility issues. Sometimes I walk with a limp and a cane. Other times I appear just fine. You could pass me on the street, and you’d never know that I’m struggling. Which makes riding on a bus or train very complicated. It becomes trickier if dare to sit in THAT seat.

You know the one I’m talking about right? It’s the chair closest to the door. There are signs with words and pictures. This spot is reserved. The ass that sits here belongs to someone in need. Trespassers will be yelled at, cursed out, and scolded aggressively. You’ve been warned! Sit at your own risk.

The problem is, not everyone with a disability looks like the pictures. We don’t all resemble the characters on your favourite medical shows. That image, while true for some, doesn’t apply to all. According to one survey, 74% of people with disabilities don’t use a wheelchair or other aides that signal a disability. We have, what’s called, an invisible disability.

Sometimes my outsides match my insides, and it’s obvious. My legs don’t bend and I walk like a drunk penguin. These are the days that I pull out my walking stick for a little extra support. Other times the discomfort is internal and invisible. 

Inside I’m in pain. You can’t see pain. You can’t see the metal rods in my legs. You can’t see the old scars and or feel when they burn. You can’t hear the crunch and grind my knees make when I walk. You can’t hear my hip pop or my back crack. If you looked at me, on a good day, you wouldn’t know because I don’t look like the pictures.

For those of us with mobility or medical conditions, riding on a crowded train or bus can be a nightmare. Just getting to the platform is horrible. There are at least a hundred steps to climb. Sure there’s an elevator but it’s usually locked. The key is almost always several stations over and the guy holding it is on his lunch break.

I’m not waiting an hour for a ride that takes less than a minute, so I take a deep breath and begin the climb. I hug the railing so others can walk past. Most don’t give me a second look. They’re busy people with places to go. They step around and continuing on their merry way.

Then comes a poke. Once, twice, three times. Behind me, a man sighs loudly and pokes me in the back. He uses an umbrella with a long metal tip. He jabs me again and I turn around. I tell him to stop. I tell him I have mobility issues. I’m going as fast as I can. I suggest, politely, that he goes around like everyone else. He calls me an unkind name and tells me to move *expletive* faster. Then he raises his umbrella to punctuate his point.

I threaten to call the police and kind strangers step in to help. He curses again and steps around me. I’ll ice the bruises later but at least it didn’t escalate. I know, sadly, that some of you have had worse experiences. I’ve heard of people with disabilities being kicked off buses and left stranded late at night. Some have been assaulted so severely they’ve ended up in the hospital. Others have been hurt so horrendously they’ve lost their lives.

Why did it happen? Well, for one, we’re easy targets and bigotry is real. In some cases, it happens because we don’t match the pictures above that seat. We don’t look like a character on a tv show. The image of what being disabled means has been distorted and we don’t measure up.

I’ve been told that I’m, “Too young to have a disability.”

Then why do we have doctors for babies and hospitals set up to treat sick, injured, children? I know, that’s a head scratcher.

I’ve been told, “Prove it.”

How do I prove something that’s invisible? I can’t! I can try to explain my situation but if they won’t hear me out? Well, the situation can escalate very quickly because they’ve made up their minds. A disabled person looks like a disabled person. I do not. Therefore, I’m not a disabled person? The logic is pretty solid if you squint, stand on your head, and hold your breath.

Public transit used to be my go to mode of transportation. I was studying downtown, and it was just easier to hop on the train. I put up with the abuse and the lack of empathy. Begrudgingly tolerated the inaccessibility and the ignorance. For the sake of convenience, finances, and the environment I sucked it up.

Every time I walked into the station or stood by the bus stop, I braced for the fight. I knew I was going to be pushed around by hurried crowds. I’d have to climb stairs because the elevator was locked and the escalators were broken. There would be at least one person who yelled at me and I had to prepare for someone to do worse than that. All of these things were inevitable and exhausting.

Now, I avoid transit at all costs. Luckily, I’m can choose my mode of transportation, but many aren’t. They have to put up with the inconvenience and the abuse. They have to fight for their right to sit in that seat. In some cases, they have to fight for their lives because ignorance, bigotry, and intolerance put them in mortal danger.

All that being said, as someone who’s needed that seat, I appreciate the people who speak up. You’re trying to do the right thing because you care about the people around you. Your compassion is remarkable and, too often, a rarity. Speaking up, stepping into help, makes you an exceptional human being. Thank-you for that and please don’t stop.

There’s a “but” coming. Can you feel it? Here it comes.

But when it comes time to speak up, can we do it without anger? Can we do it without name calling? Can we try patience and understanding? Do we really have to curse people out? Can our words be as kind as the sentiment behind them? 

I don’t mind if you ask as long as you’re respectful. Personally, I have no problem talking about what I’ve been through. That’s not true for everyone, but you can ask nicely. Something like, “Hey, uh, I get that not all disabilities are visible. Just checking that you’re okay.”

Maybe that’s cheesy. Yeah, it’s cheesy but if we’re willing to fight then we can start with a little diplomacy. Instead of starting with anger, begin with kindness and compassion. Ask, be respectful, and be open to the response. Our hearts in the right place so how about we let our hearts guide out words?

We can’t tell what someone’s struggling with by looking at them. Not everyone will look like the pictures. Our disabilities are invisible but we aren’t so please, please, please choose kindness. Follow your heart and be kind.

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All You Gotta Do Is Ask

Asking for help isn’t a sign of weakness, it’s a sign of strength. – Barack Obama

Asking for help sends me into a panic and brings on the cold sweats. I’ll do everything in my power to avoid it and, yes, often to my own detriment. Thinking about it triggers my gag reflex. My breath caughtes in the back of my throat. It feels like someone is walking across my grave. Oo, I just shivered.

Needing help is a horrible feeling. Relying on someone else is painful. Having them do something that I should be able to do it myself? Oh, it makes my heart race. Reaching out and admitting there’s something I can’t do? No, thank-you! 

I know it’ll come as no surprise that I can’t do everything myself. As much as I’d like to think I can, I’m not a blue tank engine. There’s no guy, wearing a big old top hat, cheering me on. I can’t blow smoke out of…Whoa, sorry, I got caught up in a nostalgic, Youtube, vacuum this weekend. Don’t worry, I’m reeling it in!

I hate asking for help! Yes, I know I can’t do it all. I haven’t succumb to some deluded idea of adulthood. I am a strong, independent, woman but that doesn’t mean I don’t need someone to take care of that spider in my bathtub. (It’s been three days, and I’m too scared to go in there.) I fully realize, and appreciate, that independence doesn’t mean going at it all alone, all of the time.

Needing help isn’t a sign of weakness and, yes, it’s a sign of strength. Again, there’s a spider in my bathtub, and it’s creeping me out. I’m woman enough to admit that I’m not strong enough to dispose of that eight-legged freak. Admitting that doesn’t make me weak. It’s a bit of a cliche, but it’s not a weakness!

Have I asked anyone to help me with my infestation? Would one spider considered an infestation? Probably not and, no, I have not asked someone to take care of my little problem. Kinda hoping it resolves itself so I won’t have to ask for *gulp* help. Maybe the situation is getting out of hand?

Asking for help is such a hard thing for me because, when I do, I feel like a burden. It has nothing to do with the person I’m asking. No one has “made” me feel this way. Usually, when I ask, they’re happy to help. Recently, a friend said, “I wish you’d ask me for help more often.” 

Uh, yeah, I’m still processing that one.

Oh, but here I am, caught between logic and emotion. These two entities have become my internal grand canyon. Kind of like the spider and the windowsill. Logically, I know that seeking help from the right people, is the right thing to do. I know that they’ll be happy to help if only I’d put myself out there. This whole burden nonsense? That’s not something they’re putting on me. Logically, I know it’s a burden I’m placing on myself.

But those pesky emotions! 

Maybe it comes from being sick for so long? I wasn’t in control of my own needs and that put me at the mercy of others. I was so sick that showering, getting dressed, and making food became damn near impossible. Asking for help was a luxury I couldn’t afford so I swallowed my pride and I accepted it gratefully. There wasn’t a choice and, to their loving credit, my family put their lives on hold to help me live mine. They never hesitated to show up. They never complained, not once. They were there for me and I can’t begin to express my gratitude. 

I also feel guilty for putting them in that position. 

The logical said of my brain is yelling at me. I know it wasn’t my fault. I know I didn’t, “put them in that position.” It was beyond my control and, logically, I know that they chose to help me out of love. In fact, without a moments thought, I would do the same for them. I know in my head and heart that I’m so lucky to call these people, family. 

However, unwarranted guilt gives a small voice a microphone. It takes a fleeting feeling, and it gives it a podium to preach its lies. It sirs up the emotions until every brain cell is screaming, “BURDEN!” No one wants to feel like a burden. None of us want to be a burden so asking for help?

Well, the mob goes wild.

I never want to be a burden but, more conspicuously, I don’t want to be at the mercy of other peoples kindness. It’s a horrible feeling. It’s the most vulnerable I’ve ever felt, and I never want to be that vulnerable again. Except, the most loved I’ve ever felt were in those moments of incredible weakness and vulnerability. When my family and friends showed up to help me? They loved me that much! 

I have to remind myself on an hourly basis that: Thoughts are fleeting and emotions aren’t facts. Just because I feel like a burden and I think my needs are too heavy, doesn’t make it true. Asking for help isn’t a sign of failure or weakness. Asking for help takes strength and, for some of us, a great deal of courage.

But when we ask for help? We’re opening ourselves up to love and kindness. Perhaps, even the greates love we’ve ever experienced. Isn’t that worth the risk?

So, um, this is awkward, but I have this spider situation and I could use some help.

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The Great and Powerful IT

I’m having one of those days and IT sucks. IT’s dragging me down hard and fast. I can’t stop IT and, yes, IT could be worse. IT has been worse. I usually handle IT so much better but today? IT’s kicking my ass.

The great and powerful IT. Aloof and villainous. A thief, a cad, a coward that sneaks in through a crack in my defenses. Creeping, crawling, stalking until the music swells. I’ll resist as long as I can but soon IT will reach the peak and IT will come crashing down with a vengence. Then, IT becomes one of those days.

What is IT? Pain. That pesky bastard!

I’ve been dealing with chronic pain for most of my life. I’m at a place where, most days, I barely notice it. I feel it but I can push it aside and play pretend. I do have a high threshold, but I think I’ve become a bit desensitized. I begrudgingly accept that this is my life and body. I shrug it off and carry on because what choice do I have? I can’t cut off my legs and throw them in the garbage. Believe me, I’ve asked. Apparently, doctors don’t cut off limbs without a, “Good reason.” Silly doctors. 

In case you’re new, here are the Cliff Notes. I have kidney disease and a funny thing happens when one organ fails. It triggers a cascade failure throughout the body. First, my kidneys went and then: my heart doubled in size, lungs filled with fluid, I started having seizures, and I developed renal rickets.

In more clinical terms it’s called Renal Osteodystrophy. Kidneys clean out the waste in the body and help maintain a delicate ecosystem. That includes maintaining calcium and phosphorus levels. When the kidneys stop working they stop producing calcitriol, a type of vitamin D. This means the body can’t absorb calcium from food so it starts pulling it from the bones. Without calcium, the bones become brittle and deformities develop.

I was diagnosed with rickets when I was twelve. Every time I walked, micro-fractures formed deep in my bones. The joints in my ankles, knees, and hips were worn down. My legs started to turn outward and they looked like an upside-down V. I also developed a mild curvature of the spine.

The osteodystrophy cleared up after my transplants but it caused a lot of damage. Some of it was repairable. My legs were straightened with two operations, a couple of metal rods, two months in full leg casts, and six months of rehab. My legs look normal, but there’s still underlining damage that couldn’t be fixed.

Cue the great and powerful IT!

Most of the time, its a dull ache and some stiffness. It’s more of an inconvenience than a hindrance. It grumbles along until it quickly, and without warning, turns into a full-blown tantrum. The muscles in my thighs catch on the metal rods and tear. My legs burn and cramp. My knees and hips lock up and refuse to bend. I grit my teeth, try to keep moving, but the pain is beyond words.

I have a reserve of perseverance built up, and I try to save it for days like this. It’s nice to have little something extra to lean on when standing up straight is hard. My reserves help me square my shoulders, hold my head up high, and flip off the pain. I stubbornly defy it’s presence because I will not let this bastard stop me! I keep moving, keep living my life, and do my best to ignore the screaming ache.

Today, I can’t pretend it’s not there. Maybe it’s the cold weather. Maybe I’ve been pushing myself too hard. Maybe stubborn defiance isn’t the best choice. Whatever the reason, my reserve is empty and I’m feeling raw. The pain is getting to me, and I’m mentally exhausted.

On days like this, it’s hard to remember the positives. The good days feel so far away. There’s a hopelessness and an emptiness. All I can think about are the things I want to do but can’t. The pain won’t let me live my life. Not today. I’m beginning to wonder if it ever will. What if I’ve finally broken down for good?

Jealousy isn’t an attractive look, but I’d be lying if I didn’t say it was front and centre. I watch people go out and do things without thinking. They don’t worry about how they’ll get around or if they’ll get a chance to rest. They don’t feel like a burden because their mobility struggles slows the group. They can do what they want without fear, doubt, or hesitation. No matter what they ask it to do, their bodies will answer the call. Mine won’t. I’m so envious.

My reserves are depleted and with it comes the darkness. When I’m out with friends, I know they’ll look out for me. I know, rationally, that they don’t see me as a burden. They understand or, at least, they try to sympathize. Why would they invite me along if they didn’t? 

Pity.

No! It’s not true. I know it’s not true. In my heart, I know that they care. They don’t pity me but right now it’s hard to see beyond what I’m feeling and I’m pitying myself. It’s hard not to feel like a burden. It’s damn near impossible not to envy “normal” people. It’s tempting to call my doctors and ask them to cut off my legs.

Who thinks about chopping off their legs? Yeah, it’s messed up but that’s what pain does. It’s more than a physical state. It’s a mental assault. It attacks everything good, pure, decent, and sane. Rational thought takes a vacation and in its place the dreams start.

I think I’ve spent most of today lost in my head. Imagining a different life; a better life. One where I can climb the Swiss Alps or learn how to surf in Australia. (Oh Australia, you’re in my thoughts and prayers.) 

In that dream world, I can do everything my messed-up legs won’t let me do. That world is perfection. There’s no pain, jealousy, or pity. I want to live there forever, but it’s not real. It will never be real because every dream ends when reality calls.

This is just my life. It’s not perfect. It’s messy. It’s painful. But when this ache dissipates it will also be pretty damn good. I’ll take my dog for a walk in the rain. I’ll take my camera and get some cool shots. Maybe I’ll go out for dinner with a friend. I’ll begin replenishing my reserves. 

I will get back to living my life as long as I hold on. Hold on. Hold on. Hold on just a little bit longer.

*Thanks for reading. Don’t forget to give this post a like, leave a comment, and subscribe. Have a great weekend.*

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My Best Friend and Worst Enemy

“You may find the worst enemy or best friend in yourself.” – English Proverb

Do you like who you are? The way you look. The sound of your voice. The way you act in social situations or the way you handle stress. When you look at all the things that make you, you, are you happy? Is there a long list of things you want to change or is that list short and sweet?

I’d love to write a post about how I went from hating myself to loving myself. Offer you five easy steps to find your inner warrior. Self-acceptance in ten days or your money back! *Conditions apply* If only there was a coupon! If it worked like that then I’d be the beacon of positive mental health.

As it is, I’m just a relatable mess…Question mark?

We all have things we don’t like about ourselves. We stare at our reflections and those little imperfections might as well be lit up like a UFO in the night sky. The butt’s too small. Hips too big. Slightly crooked eyes. Is that a pimple? Arg, just what I need right now!

What about the imperfections that don’t reflect in the mirror? The ones our eyes can’t see but our hearts feel. It’s who we are at the core of our being and who we think we should be if only we weren’t ourselves. Like a video loop playing in our minds, we judge every mistake as if it was a critical error in our programming. The stupid stuff we did or said. Those times we weren’t at our best and times when our best wasn’t good enough.

“Why do you have to be so weird?”

“Remember that one time?”

“Yeah, awkward much? And you wonder why you’re alone.”

It’s hard to like myself when half the time I can’t stand being near myself. I’m my worst enemy. My arch-nemesis. Comic book villains have nothing on me! All you haters and trolls? There’s nothing you can say that’s worse than what I say to myself. No, that wasn’t a challenge. Please be kind. We all need a little more kindness.

We all need to treat ourselves with a little more kindness. Did I get that off of a greeting card? Maybe. Still, it’s good advice, and I need to take it to heart. I’m my worst enemy, but I want to be my best friend. I want to like myself, learn to love myself, and appreciate all my unique qualities.

Sure, I’m awkward and a bit odd but I’m also hyper-empathic. I feel what you feel on such a deep level. That brings with it, an overwhelming sense of compassion and curiosity. I’m genuinely interested in your life, who you are, and I unreservedly want the best for you. That’s a pretty good quality to have. Don’t we all need a little more compassion and understanding? I know I do! Which is why I give it so freely.

I’m quiet and shy, but that makes me a good listener. We all need to be heard don’t we? Especially when life kicks us in our no-no spot. Having someone who can hear our words and see the best in us is an amazing gift to receive. It’s an amazing gift to give. The fact that I can do that for someone is kinda cool. 

Does anyone else get a queazy feeling when they start talking nicely about themselves? Yeah, my stomach is bubbling because changing the narrative from a negative to a positive is a little unsettling. I feel like I’m gloating. Ego-maniac much? Check myself before I wreck myself? I should shut up and disappear into the shadows. 

No, wait a second! I’m just being a little kinder to myself. These qualities that I view as negatives come with some positives. All I see are the bad things they bring, but there’s some good too. There’s always some good in the bad. Maybe I need to look at myself through a pair of rose coloured glasses. Would that help?

I know those glasses aren’t popular, and they fog up real easy. They’re a close cousin to clown shoes but at least that clown is happy. For a short time, that clown dances and sings. It pulls flowers out of its pocket and laughs like it’s the greatest trick ever performed. As long as those shoes, and glasses, are on there’s happiness.

So let’s put on the rose coloured glass, stand in front of that mirror, and take a kinder look at ourselves. Look through those glasses with compassion, empathy, and gratitude. It’s not about perfection or blind optimism. It’s simply taking a minute to thank our hearts for beating.

We can take another minute to look at our perceived weaknesses and find their strengths. They’re there! I know they are. When I look at you, I see an amazing person with so many amazing gifts. If I can see that in you, why can’t I let myself see it in my reflection? If you can see it me, how about seeing it in yourself?

It’s okay to show ourselves the same kindness we’d show our friends, families, loved ones, and strangers. It’s okay to list our good qualities. It’s not bragging! It’s showing gratitude and compassion. It’s turning our backs on our own worst enemy and embracing the best friend we’ll ever have.

What are your best qualities? Leave them in the comments below. Maybe you’ll inspire someone to find theirs.

Don’t forget to like this post and subscribe for more content.

See you all on Friday!

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Say Hello To My Little Friend

A gremlin lives in my head. His name is Stewart. I know, it’s not a very scary name for a gremlin. I think it’ would prefer something like Scar, Zeus, or The Great and Powerful Norman. Something majestic or, you know, grr. Well Stewart, my old nemesis, you can suck it! 

Let me backtrack a bit. If you’re new, (Hey how’s it going?), I have chronic kidney disease. The kidney’s I was born with this package were damaged and died. I’ve had some new kidneys put in and right now I’m doing pretty good. Knock on wood. Spin in a circle and spit three times. Not tempting fate! I’m just saying I’m all right.

I’m going to get hit by lightning, aren’t I? Damn it.

Having a transplant is a surreal experience. There’s years of waiting, hoping and, if you’re into that sort of thing, praying. There are blood tests, probing, and they scan every inch of the body. There’s no part of my anatomy that wasn’t searched for buried treasure. That included my brain. Yep, there were psychological evaluations to make sure I could handle the incoming missile.

I know this’ll sound strange, please hear me out, but having a transplant is a blessing and a burden. On the surface, it seems like a no-brainer. Are you ready to undergo a life-saving procedure? Can you accept this gift of life? Uh, have the transplant: Live. Don’t have the transplant: Die. Golly gee let me think about that for a minute.

There are a million hoops to jump through and when you’ve made it through the obstacle course your reward is, drum roll please: A brand-new spot on a waiting list! Oo, fancy. Does it come fuchsia? 

Okay, there’s another option. If you have a living donor then you’re in pretty decent shape. It still takes months of testing but it isn’t years of waiting. You aren’t on a list with hundreds or thousands of people all hoping, wishing, and praying for the same kidney.

I’ve had three transplants since my diagnosis. The first two were cadaveric. Which sounds so, I don’t know, fatal. Well, it is fatal. It means the donor was declared brain dead and their family decided to donate their organs. Which sounds so callous. There’s no feeling or empathy in the definition. It doesn’t do justice to the loss or the gift given. 

But that waiting list.

This is what we’re waiting on. This moment. An accident. An unexpected trauma. The person’s brain has died. Their thoughts, hopes, and dreams are over. The body is kept alive by machines but who they were, their soul if you prefer, has moved onto whatever come’s next. They’re dead and now their family has a devastating choice to make.

Driving in the car, my parents would turn on talk radio. Politics. Weather. Some droning voice going on and on. We’d complain. Ask for something else, anything else, but my parents wouldn’t budge. Something about shaping young minds?

The voices carried on and we’d sigh as loudly as we could. Hoping our parents would take the hint. Then the traffic report came on and the car became very quiet. “Accident on Highway 1 eastbound.” Now it gonna get interesting. “Reports of one fatality.”

Game on!

One of us would say it. Who’d get it out first? “Think they’re an organ donor?” We have a winner! Believe me, I know it’s macabre. A person died. A family was about to receive devastating news. Their loved one was gone and their grief would be very real.

But I was dying.

My life was coming to an end.

My family’s grief would be very real too.

Sitting in this limbo between life and death. Hoping someone else would die. Praying that their family would sign the paperwork. Wishing for the one phone call that would give me a future and spare my family from that pain. It’s twisted.

Then the phone rang, and they said the one thing we’d waited so long to hear, “We’ve got a match.” There’s a kidney. It’s mine. I’m not going to die.

But someone did die. 

Their loved ones were saying their good-byes. The donor was being wheeled into an operating room. Their body was being cut open, their organs removed, and their life officially ended. Their time of death was written on a form. The body was sent to a funeral home. This person, that life, was gone.

It’s an amazing thing to do! One donor can save eight lives. Their eyes and tissue can improve the lives of up to fifty people. In the worst moment of their lives, a family chooses to save the lives of strangers. Does your faith in humanity need to be restored? Here you go. Do you need proof that angels exist? You got it.

As amazing, kind, generous, and unbelievably selfless that gift is, one thing hangs heavy. I was waiting, hoping, praying for a chance to live. That means I was waiting, hoping, praying for someone to die. The weight of that is beyond words.

At the time, it doesn’t sink in. No one talks about it but one word sits quietly in the corner. Donor. It’s not a name, a person, an identity. Simple pronouns. He. She. They. Donor. It creates distance and anonymity. It allows us to walk into the hospital and into that operating room without the burden of truly knowing. 

We can pretend that the kidney was given without sacrifice because if we stopped to think about it then, well, I don’t know. It’s survival. It’s a miracle. It’s a gift that came from somewhere out there. Their pain is our joy. Their lives ended so ours can carry on.

Eventually, the veil lifts and with it comes the guilt and shame. There’s an overwhelming sense of unworthiness. Do I even deserve this life I’ve been given? I should be dead. The doctors said I wouldn’t live another six months. All the signs pointed to an early grave but I’m still here. Why me? Why not them? Why was I spared and their lives ended?

If I hadn’t wished on that shooting star or said those magic words on bended knee, maybe they’d still be alive. But they’re gone. I’m still here. I don’t deserve this. I’m not worthy. Oh God, how ungrateful am I? I should be happy. I should be celebrating. I shouldn’t feel this way.

My little gremlin was born out of a lifetime of disease and long walks with the angel of death. Endless pain. One trauma on top of another. Stewart, that bastard, grew stronger and louder. He took the miraculous and turning it into a curse.

Stewart stole my joy, wonder, and my will to live. He took so much from me that I seriously considered giving up. But I couldn’t do it. It felt so wrong. Spitting in the face of those that gave everything to save my life. I just couldn’t, but I couldn’t live like that anymore.

The only other option was talking to someone which, to be honest, sounded horrible. Saying the words out loud felt worse than keeping them buried but I couldn’t go on like I was. I was way too tired to keep it up.

So I sucked it up and went to a psychiatrist. She told me something that blew my mind. Turns out over half of transplant recipients struggle with depression, anxiety, PTSD. The numbers sit around 60-70% the last time she checked.

Wait! What? Hold up. You know what that means right? I’m not alone in this. There are others like me out there right now. They’re feeling what I’m feeling. They’re fighting what I’m fighting, and some of them are winning. That gives me hope that maybe, someday, I’ll get rid of this gremlin in my head.

Not today and probably not tomorrow. I’m a work in progress. I’m not where I want to be just yet. Stewart’s still banging around up there on some bongos. Making a noise or just being an ass. Somedays I just shrug him off. Other days he lays me flat on my back but I do win more battles than I lose.

That’s an improvement, and I’ll celebrate that small victory!

If you’re struggling, no matter what the cause, please remember that there are a lot of us out here fighting along side you. For me at least, knowing that goes along way. I know that I’m not alone. You’re not alone. We are not alone. I know it’s not much, but on a bad day it’s something and something is a lot better than nothing. 

What helps you fight your gremlin? Let me know in the comments and I’ll see you next time.

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Miss Sunshine

“We are shaped by our thoughts; we become what we think. When the mind is pure, joy follows like a shadow that never leaves.” – Buddha

When I was a kid, I won a Miss Sunshine award for always having a smile on my face. No matter what happened I smiled and laughed. Surgeries, hospital stays, teased for being the one disabled kid in school? I smiled, cracked a joke, laughed, and kept on walking. It annoyed the bullies and inspired the adults.

Want to know my dirty little secret? I was in so much pain. I’m not talking about the physical pain. That was there and it sucked but the emotional pain was so much worse. My heart throbbed. There was a constant weight pressing against my chest. My stomach felt like it was turning itself inside out. I was too young to understand these feelings. I didn’t have the vocabulary to say them out loud, so I swallowed them down.

I stood in front of the school, at the end of year awards assembly, with that smile on my face. I laughed, shrugged my shoulders, and listened to the principles kind words. I bit my lip and shifted my weight between my feet. I awkwardly waited for it to be over. On the outside, I was this happy, stoic, kid. 

Inside? I felt like a fraud. My heart wasn’t smiling. My heart wanted to cry! If they only knew but they didn’t. No one knew what I was feeling or thinking. Of course they didn’t! I didn’t tell them. 

Thing is, standing there that day, I also felt a sense of accomplishment that had nothing to do with that plastic trophy. See, my mask had worked! I had em all fooled. The grown-ups and the bullies. They all thought I was made from Teflon. They gave me an award for my positivity. I was depressed, anxious, and my CPTSD was just getting warmed up. No one knew because my smile, witty sarcasm, and stoicism created the perfect smokescreen. 

It was one hell of a magic trick!

You know what’s even more impressive than fooling others? Fooling myself into thinking that this was the best course of action. I shoved my dirty little secret so far down that it made a home for itself in the pit of my stomach. It wrapped its claws around my heart. It festered and grew down in the darkness.

I thought I was doing the right thing because I thought I was a burden. My kidney failure, heart problems, and seizures put a strain on everyone that loved me. They never complained or did anything to suggest I was a burden. My family gave me unwavering, unconditional, love and support. I placed this burden on myself because my thoughts were erroneous.

The things I say to myself are crueler than anything those bullies said. The thoughts I have, the way they shape how I feel about myself, are horrible and misguided. They’re tainted by my dirty little secret, and I know, logically, that they aren’t right or justified.

If, as Buddha says, “We’re shaped by our thoughts,” then what have my thoughts turned me into? A neurotic mess who feels like a burden. A fraud. A fake. A two-bit magician with a one-trick pony. Torn between logic and emotion. Walking a fine line between reason and madness.

All of these thoughts, the feelings they bring, are wearing me down. I’m so tired. I’m physically, mentally, spiritually exhausted. Something has to give or something will break. The only thing I can change right now, or try to change, are the thoughts I’m having.

Sounds easy? Yeah, I didn’t think so.

My thoughts have hidden my joy behind the rain clouds for so long; I’m not sure I’d recognize the sun. Changing that isn’t easy. My thoughts are so automatic. It’s easy to think negatively but that needs to change. I want joy to follow me like a “shadow that never leaves,” and for that to happen I need to rethink how I talk to myself.

So that’s what I’m going to try to do. This year, I’m challenging my thoughts and how they shape my view on life. I want to stop the automatic negativity and replace it with something more balanced. Yes, it’s a tall order so let’s start with small steps. 

I’m going to find words of wisdom that don’t just inspire me but put my thinking to the test. It’s time to question what I believe to be true so I can find some clarity. Since writing helps me process, I’m bringing you along on this journey, quest, thing. Together, we can change the way we think and how our thoughts shape us. It’s possible. It has to be possible! Life is too long for it to be too late to find our joy in the shadows.

Please leave me your thoughts. I love hearing what you have to say. Like this post, subscribe, and I’ll see you Friday!

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New Year New Me?

Happy New Year! A new year means one thing: We’ve written up our resolutions. Lose weight, spend less, save more, and a thousand other things. These lists are full of good intentions but, in the back of our minds, we know the list will be abandoned by February. It’s inevitable or maybe I’m the only one with no will power.

What’s that old joke? My one resolution this year is not to make resolutions. So, you broke your resolutions already? Hardy-har-har but accurate.

I used to write up my resolutions and stick them on the refrigerator. I had a plan. A pretty little plan. It would be different this time because this time I was determined. More determined than every other year? Uh…Nope! I fell short every year, and that list became confetti in my very own pity party parade.

So, I gave up on resolutions because, well, what’s the point? I’d try to be good for a couple of weeks, fail spectacularly, and throw in the towel. Yeah, I lack self-control and will power. Or, here’s a thought, maybe I was focusing on the wrong things?

Yes, I want to lose weight and get in better shape. I’d love to save money, and traveling would be amazing. These things are important to me, but they don’t inspire me. They don’t light a fire in that special place. They don’t keep me moving when I feel like my feet are in quicksand. I’d even say that these resolutions become the quicksand! Which is why I sink instead of fly.

For me, new years resolutions end up feeling restrictive and burdensome. My life has enough restrictions, and I think we’ve all got more than our fair share of burdens. Why add to that? Why make life harder? Besides, my rebellious side throws a tantrum when I try to put baby in a corner.

I’ve given up on resolutions, but I feel like I need to push myself into the new year. A swift kick in that special place. I’m thinking of trying a Hope List. It’s a wish I can make on a star and bended knee. Small things or big. Things my heart desires and my soul craves. Things I can put out into the universe with a quivering belief that something good will come back. Maybe it will help me work a little harder? Maybe I’m just draping an old tradition in new clothes?

Either way, this is my (partial) Hope List:

– I hope to grow this blog even though I don’t know-how. (Yet.)

– I hope that I have it in me to write more and post more often.

– I hope I have the courage to try more things that scare me.

– I hope I can have more patience with myself, the passage of time, and those around me.

The nice thing about a Hope List is that it can grow and change. It’s open-ended. It’s more fluid and less restrictive. It connects with my heart and, to be honest, just writing it made me want to cry. I’m not sure why but I think I hit something a little too hard.

I have so many hopes for this blog and my personal life. Some of them seem so big, and I’m not sure I’m tall enough to reach. Some terrify me. Others were just too personal to post online. All of them have a spark that could, possibly, grow into a fire.

Like I said in my first post, I’m just starting to explore the world outside of my diagnosis and disability. My steps are small and tentative. I’m feeling lost and scared. There’s still so much I don’t know. There’s still so much I need, and want, to learn about life and this online world.

That being said, I solemnly swear to you and myself that I’ll try to do my best. I’ll try to forgive myself when I fall short. I will always try to show up with as much of my heart as I can spare. Let’s add that to the Hope List! I hope my heart is strong enough to show up.

Do you have a Hope List or are you a traditionalist? I’d love to hear from you so please leave a comment, like this post, and subscribe. Happy new year my friend!

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Merry…Whatever You Celebrate!

Merry Christmas! Happy whatever you celebrate! I wish you all the sweet things like sugar and spice. I hope you have a decorated tree and lots of mistletoe. Oh, and sparkling lights hung with care. Peace and goodwill to all and to all a good season. 

I’ve been trying to write a post that fits this holiday. I want to write something joyful and uplifting but, to be honest, I’m struggling. It’s not a new struggle but it’s one that gets harder to handle every year because I don’t like Christmas. 

There I said it out loud! I’m a Christmas hater. Grinch. Scrooge. Oh, the horror! Okay, I’m exaggerating. I don’t hate it. I don’t like it but hate is a strong word and a step too far. Before you say it, I know I’m supposed to be happy this time of year. I’m supposed to feel the Christmas spirit, but all I feel is extremely anxious, depressed, and hollow. 

I feel guilty because admitting that I’m not a fan of Christmas makes me feel like a failure. I’m sad that I can’t feel what others feel. I’m a little ashamed that I can’t enjoy this like I’m supposed too. Am I going to post this? Right now, as I’m writing, I don’t know. Did I go through with it?

Not liking Christmas, being depressed around the holidays, feels like it should be hidden away. Isn’t that the right thing to do? I don’t want to bring you down just because I can’t get into the mood. You deserve better than that or maybe we all deserve a little more honesty.

I keep trying to figure out why Christmas puts me in such a funk. Maybe it’s this signpost moment that’s forcing me to look at my life a little too close? The many failures, mistakes, and ghosts of this past year. All the things I’d hoped for and all the things that didn’t happen. The sign of time passing and time running out.

That’s morbid enough to make anyone depressed.

Maybe I’m just missing the magic and wonder of the season? Leaving cookies near the Christmas tree. Santa stuffing stockings while his reindeer wait on the roof. Waking up in the morning, seeing the presents, and storming my parent’s room with so much energy I thought I’d explode. Oh, I miss those mornings so much!

The magic faded, the jolly man stopped visiting, and the energy melted away. The wonder of the season vanished and now it feels empty. What I wouldn’t give to go back in time. I’d love to be that little girl who fell asleep under the tree waiting for a glimpse of the red suit. I want to feel the bursting bubble of energy hovering over my heart. I want it so bad, my heart throbs.

I’m looking for the magic, but all I see is another year coming to an end. Another list of failures, mistakes, and ghosts. Now that I say it out loud, I’m wondering if I’m looking for the wrong thing? Instead of looking for something that faded away, I need to see the things that have taken its place. Or does that sound too fanciful?

My cynical eyes just rolled.

Then again, this past year has brought some positive changes. This blog is a good example. I can’t tell you how many years I’ve thought about doing this and didn’t. I didn’t think I had anything to offer. What could I say that would mean anything to anyone? Who do I think I am, writing about life? But, some of you have reached out and your words have filled my heart in all the best ways. The fact that you’re reading this now, giving it a like (subtle hint), sends this jolt of joy through me that’s pure electricity.

A year ago I thought, “Maybe?” Now, I am doing it, and it’s giving me this sense of purpose that I’ve never felt before. I’ve been looking for the reason I’m still alive, something to give my life meaning, and maybe I’ve found it. It’s early days but the possibility is exciting. The possibility alone is pure magic. It’s better than anything that red-suited cookie thief ever gave me.

I know Christmas brings expectations that we can’t live up too. We feel like we have to be jolly St. Nick and anything short of that leaves us feeling like the Grinch. There’s this constant reminder that this is a time to be with family and, maybe, we don’t have one of our own. It’s hard, painful, and lonely, but there’s a chance that there’s some magic in our lives. Something that will carry us through this season and into the new year.

I don’t know what that is for you but when you find it can you let me know? Magic is contagious. It brings out the wonder we’ve lost sight of and helps us see a little clearer. Those lights on the Christmas tree? For many of us, it’s just not bright enough but our stories are. Share your story and share the magic.

Before I go I want to wish you, my friend, the merriest of whatever you celebrate. I wish you all the joy, wonder, and magic in the world. From my heart to yours: Happy holidays.

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Just Plain Peculiar

I abhor social situations. Big or small. Family, close friends, or strangers. It’s all the same. I feel an overwhelming desire to run, hide, and call my mommy. If I can get out of going then I just won the lottery. If I can’t? Well, maybe it will be fun? Cringe.

Here’s the thing: I’m weird and awkward. I’m peculiar, quirky, and socially inept. I say the wrong thing, or I don’t say anything at all. I don’t fit in, anywhere. I never learned how. The niceties. The social customs. The intricacies of the normal world are as foreign to me as life on another planet.

Now that I think about it; I grew up on a different planet. This strange land had its set of social norms. It had its special blend of niceties and social graces. The way we talked and the way we fit together, in this parallel universe, was uniquely ours.

My friends were just like me. Living in this world of disease, surgeries, needles, and white coats. Taken away from the lives we wanted to live. Thrown into one that existed inside the walls of a hospital. We were all apart of the “other” and, in that, we found companionship.

We were trapped inside failing bodies with time running out. Living with the knowledge that you’re about to die simplifies life and the rules became just as simple: Don’t waste a precious second. Laugh often and laugh hard. If you need a good cry have at it. Most of all, if you need someone, someone will be there.

It was okay to sit in the silence. The quiet didn’t need to be filled. Being present was good enough. Watching a movie, playing a video game, or simply hanging out. Staring at a wall or out the window. It didn’t mean we weren’t engaging. It didn’t mean we weren’t enjoying the company. We were in the same space, sharing that moment, and it was good.

We were adults in the bodies of children, and our conversations were flecked with both identities. We watched morning cartoons and tried to get out of school. We talked about the surgeries we had coming up and what risks they presented: “Yeah they think I’ll make it through but I heard a nurse say it’s 50/50.” The reply was simple, “If you don’t die you’ll have a cool scar.”

Death. We talked about it. Talked about what kind of funerals we wanted. Me? I wanted a pizza party with balloons, cake, and a clown but not a scary clown. Dancing! A lot of dancing and stupid jokes. The more knock-knock jokes the better. Yep, that sounds about right.

We talked about the friends we’d lost and how we’d like to go when our turn came. We all knew our turn would come. Death was real. It was permanent. It meant we were gone, our bodies were buried, and we’d never come back. Where did we go after we died? We all had our ideas.

We had sword fights with our feeding tubes and dialysis lines. We raced our wheelchairs and surfed on our IV poles. We played practical jokes on good natured nurses. Empty syringes became water guns. Typical kid stuff?

That world was messy, painful, but also uncomplicated. Out here, in this world, things aren’t so straightforward.The rules are baffling. The social norms are strange, and I’m lost. I’m so confused. What do we do if we never learned how to fit into this world?

Have you ever tried to understand cricket? The game, not the insect. Sorry, Dad, you’ve tried to explain it but it just won’t stick. I’m impressed by the intensity of the spectators, the physical abilities of the players, and the passion of devoted fans. I still have no idea what’s going on!

Going to a dinner party is a lot like that. I appreciate the graceful movement of a charming host. The effortless conversation is a wondrous thing to behold. The beautiful sound of laughter and the excitement that fills the room is heartwarming. I still have no idea what’s going on!

I sit back and watch it all play out and try to learn. Silently praying that no one asks me to pinch-hit because I’ll drop the ball. Actually, I’ll toss it through the window and make a mess. It’s safer for everyone if I just sit here quietly. Silence is safer. Being alone is more comfortable. Engaging is hard because I never learned how.

I’m trying to learn. Trying and failing and trying again. I’m more comfortable on my own. I enjoy the silence. I don’t need to be a part of the conversation to enjoy what’s being said. Being present is good enough. Not always great but good.

I’m peculiar, awkward, and just plain odd. I don’t know if I’ll ever fit into this normal world. I would love to belong or, at least, find a few more people who look past my awkwardness. I wish I could be a little more “normal” but I think I’ll just have to come to terms with being me.

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Act Your…What?

“You don’t act like a disabled person.” Um, not sure what you mean. “You need to start acting like a person with a disability.” Yeah, that didn’t clear anything up. Can you be more specific? “The way you are, the way you act, the way you live. That’s not how someone with your condition should act.”

How should someone with “my condition” act? Curl up in the fetal position and sob. Tear off my clothes and throw ash over my head. Sit quietly in a corner until death graces me with its presence. Rue the day I was born with a clenched fist. Damn you! Grr.

“No, just not this!”

Yes, this was a real conversation with a (cough) well-meaning individual. It wasn’t the first time someone said this to me and (dramatic sigh) it won’t be the last. The first time? I was around 7-8 years old, and a teacher wouldn’t let me play with the other kids because someone “With my condition” wasn’t supposed to have fun. Maybe I was supposed to sit quietly and contemplate the meaninglessness of life? I don’t know.

As often as it happens I’m no closer to clarity. If my body doesn’t work then I don’t deserve, or need, to live a full, happy, life? Is that what they’re saying? Why would I’d want to, I don’t know, fall in love, go out to dinner with friends, laugh until I almost pee myself? How about dreams, hopes, aspirations? All the silly little things that “normal” people enjoy. Don’t I deserve that too?

Act like a person with a disability. Huh. There’s a thinker for ya. 

I blame the media! Okay, I don’t, that’s just silly. Sure, we’re portrayed as one-dimensional caricatures. Frozen in a moment. A singular identity without the possibility or need to be something more. We’re a plot point used for sympathy or inspiration. A real person with needs, desires, and hopes that have nothing to do with what our bodies will or will not do? Perish the thought.

If all you’ve ever seen is a fictional representation then the ignorance is understandable. Ignorance can be remedied so let me help you out: We’re real people. Our illnesses, our disabilities, are simply one small part of a much larger identity.

We love as you love.

We hope as you hope.

We dream as you dream.

I’m just like you except I walk a little bit funny and have to take medications twice a day. Maybe I have more scars on my body. There are days when I get tired faster than you. I take my vacation in hospitals instead of tropical islands. But all these things? They’re nothing but a drop of paint on a vast mural.

Who you are isn’t defined by your ability to run a minute mile. Your identity isn’t wrapped up in your pretty faces. How often you call in sick or how many cups of coffee you drink won’t be the only line in your biography. I’m willing to bet it won’t be a footnote because you’re more than all of that and so are we.

But sometimes the problem runs deeper than ignorance. There are times when my illness makes people uncomfortable. Why? Maybe I remind them how fragile the human body is? Do they see their mortality reflected in my disease? Is it something else?

I’m honestly asking! I don’t know. Why does my illness make you so uncomfortable? You can’t catch it. Kidney disease isn’t like the flu. It isn’t a virus traveling on a sneeze. You’re safe. It doesn’t rub off. I’m not a scratch and sniff sticker. You’re all good, I promise.

Is the problem the disease, the disability, or is it me? Ah, but there it is! I’m a puzzle. A riddle. I straddle the line between what is and what you think things are or should be. I’m not a portrait. I’m an abstract painting.

Sometimes I look sick. Sometimes I don’t. 

Sometimes I limp. Sometimes I don’t.

Sometimes you can tell I have an illness and sometimes you can’t.

If I fit in a box with a shiny label then you’d know. Something universal that defines who I am. A pretty little package all neat and tidy. Would that make it easier for you? Would that make you more comfortable? 

Well, you’re going to have to get comfortable with being uncomfortable. 

I’m not here for you. I’m not here to make you comfortable. I’m not here to fit in your picture frames or sit in that pretty little box. Is that callous? Maybe. I would apologize, the Canadian in me is screaming sorry, but I won’t because this is something we all need to hear.

Their limited imagination doesn’t get to limit your life. That power isn’t theirs. No matter how uncomfortable they are, you don’t have to give them that power. We define who we are. We decide how we live our lives. That power is ours alone.

Since I am a good Canuck, I will give you an apology: I’m sorry you’re uncomfortable, but you need to understand that we’re more than our illnesses and disabilities. Our value isn’t physical. Our worth isn’t measurable. Our identities aren’t wrapped in a pretty little package. Our power isn’t for sale, and it’s not a door prize at the fair. No one defines us except us.

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Thank-you

UPDATE:

Last week I ran into some problems with my web host, and I had to shut everything down. That meant finding a new host, creating a new site, and uploading all of my blogs. It’s taken a lot of time but it’s done and I’m so happy! Thank you for your patience, understand, and support. 

Now back to a regular posting schedule! Every Friday I’ll put up a new blog. If you have questions or topic ideas please send them to me. Living with a chronic illness, chronic pain, and mental health? Life outside of all of that? I’d love to hear from you.

Thanks again! Your support means the world to me.

Keri.

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What Could Go Wrong

You had to ask! You had to say the words. Tempt fate? Why the hell not! Let’s put it out into the universe and see what happens. It’s not like the universe likes to sucker punch the foolish. Oh, wait, yes it does! It does it for the giggles. Oh, but okay, go on, give it a try!

Yeah, you’re right, I need to breathe. Calm down! Jeez. Sensitive much? Sure, but for good reason.

I’ve been the fool who’s tempted fate with reckless optimism. I’ve let my hope run away with my better judgment. I believed the best when I should’ve prepared for the worst. Those words came out of my mouth and you know what happened?

BOOM. POW. SMACK.

Right across the kisser with a brace knuckle. Fate doesn’t care that those knuckles are illegal. Good luck slapping handcuffs on that little bastard. Nope, as long as its punch inflicts maximum damage, then all’s fair in hope and fairy dust. It’s just the way the system works. Designed for pain. Destined for failure.

Too cynical?

I don’t know when I started to expect the worst. There was a time when I said my prayers at night fully expecting the best but now? If I’m being honest, when I pray, I don’t know if I believe the words will count for all that much. Will it change the outcome? Maybe. Maybe not. A part of me has to believe, or I wouldn’t still pray, but I feel like a fraud. Asking for divine intervention; never fully embracing the possibility.

Maybe it’s a learned response? I’ve been in plenty of situations where prayer seemed like my only hope. When I was three, my parents prayed that my kidneys wouldn’t be damaged, but I was diagnosed with chronic renal failure. We prayed for a transplant, but the kidney I received didn’t work. There’s a long list of prayers that pair off with disappointments but still we prayed, hoped, and believed.

I can’t tell you how many times we’d sigh and say, “At least that’s the worst of it.” We tempted fate and the lesson was taught: Expect the worst, pray for the best, prepare for all hell to break loose. I’d even say that, for me, it’s become, “Pray for the best but don’t expect much.”

When something twinges, I automatically assume the worst. There’s pain; this is it. My time’s up. I’ve had a good run. It’s over. I stress, I worry, I pray with the fraction of my heart that still believes in miracles. My eyes squeeze shut, and I wait for the punch.

What happens when the twinge turns out to be a strained muscle and not a life-shattering illness? Is that proof of a miracle or was I just lucky? Maybe you have a ready answer but me? I don’t know anymore.

I want to believe in miracles, fairies, and magic words that make it all better. Not just half-hearted faith. Not hope that’s covered with surgical scars. Not cynical eyes that see a cloud of smoke instead of fairy dust. I wish my ears didn’t hear empty platitudes instead of inspiration or optimism.

Like a Pavlovian experiment, the bell rings and my view of the world is met with cynicism. Is it’s a natural byproduct of trauma? Has experience taught me some hard truths? Perhaps it’s a burning fear of being disappointed, heartbroken, and crushed one more time. 

My mom and I were talking about this, and she asked, “Why do we always assume the worst?”

When the worst always seems to happen, it’s easy to expect it will happen again. However, there’s a difference between expectations and reality. One’s founded in assumptions and cynicism. The other is a tangible, verifiable, entity. One is felt; one is experienced. Together they create our world view.

If I look back, past the pain and disappointment, there are times when prayer and hope won the day. When my heart stopped and there was little chance I’d come back? Hope, prayer, brought me home. When time was running out, when I only had months to live, that second kidney transplant was a miracle.

When I take a minute to reflect I realize that there are moments when the universe gave me a hug instead of a punch. Small moments of respite in whatever storm was raging. Large, momentous, events that reshaped my life for the better. Times when I should’ve died but kept on living. 

It’s these moments, big or small, that validates the faith hidden under the scars. They’re the reason I still pray even though my heart might not be all in. When I stop, breathe, and look back I find the evidence I need to keep moving forward. 

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Just Breathe

Meditation is good for our health? Really? Shocking. Okay, it’s not breaking news. It’s a practice that’s been around for centuries. It’s proven to help with things like: Chronic pain, chronic illness, and fatigue. It can help people dealing with depression and anxiety. It can help anyone who’s looking for an overall sense of well being.   

Sounds great! Want to give it a try?

We need to find a comfortable position. Got it? Fantastic. Now, close your eyes and relax those muscles. Start with the head, down the neck, shoulders, arms. Breathe in and out through your nose. Nice and easy. In and out. In and out.

“You’re walking along a forest path. The ground beneath your feet is soft. Fallen leaves crunch underfoot. As you walk, your body relaxes and your mind clears. Take a deep breath in and let your lungs fill with cool, fresh, air. Exhale. Take another breath in and let yourself be renewed.

“Sun filters through the treetops. Birds sing softly. A gentle wind blows and the leaves rustle. Up ahead, you hear the sound of a rushing river. Breathe in: 1, 2,3,4. Breathe out: 1,2,3,4.

“Breathe in: 1,2,3,4.

“There’s a low growl from the rivers edge.

“Breathe out: 1,2,3,4.

 “Breathe in: 1,2,3,4.

“The bear lunges at your face and you let out a bloodcurdling scream.”

I don’t want to be mauled to death by a bear!

What? Wait? Wow. I’m okay. There’s no bear. I’m safe. It wasn’t real. What the hell happened? It’s not supposed to work like that is it?

Um, I think we should try a different one. Yeah, a different meditation. Someplace without bears. No bears. That sounds like a plan. I got this. I can do it. Get comfort, relax, and breathe

“You’re walking along a quiet beach. The sun barely breaks the horizon. Waves gently roll onto the shore. The ocean stretches out in front of you. There’s a slight breeze. It’s cool but comfortable. Inhale through your nose and exhale. 

“The water rolls against the shore. The sea is so calm. The gentle lapping of the waves draws you in. Your feet sink into the wet sand. The saltwater dances around your ankles. It feels warm and fresh.

“The sun’s a little higher now. The glow reflects off the water. You wade farther in and your fingers glide over the smooth surface. All is calm. All is peaceful.

“Breathe in: 1,2,3,4.

“Breathe out: 1,2,3,4.

“Breathe in: There’s movement on the horizon, and you squint.

“Breathe out: The waves come in harder, faster.

“Breathe in: Up, up, up it comes!”

I don’t want to be eaten by a sea creature!

Oh holy hell! I thought this was supposed to be relaxing. What am I doing wrong? Millions of people, over thousands of years, have benefited from meditation. It should work for me too. Why isn’t it working?

Am I doing it wrong? Maybe my overactive imagination and anxiety are just having a giggle. Maybe I’m not relaxed enough. Is it possible that meditation doesn’t work for me?

I can’t sit still and focus on my breathing for more than two minutes. My chest tightens and my shoulders tense. Images of pain, suffering, and death run through my head. After five minutes, my anxiety reaches max capacity and I think, for a brief moment, that I might prove spontaneous human combustion is real.

Oh boy, that was a long sentence.

Maybe it’s something we have to grow into? An acquired taste like, I don’t know, pumpkin. If I keep trying, it will get easier. Right? Except, I hate pumpkin and every time I meditate I feel like I’m going to vomit.

Traditional meditation might not be for me. Sitting, breathing, relaxing? I just can’t do it. I get why people love it. I can appreciate its benefits. There’s a good reason why it’s been around for centuries. It helps people slow down, heal, and live better lives. Meditation is a great practice.

 It doesn’t work for me. 

Awhile back, I was on a hike and I met an interesting woman. She teaches yoga and meditation. I told her that I was having trouble and she gave me some advice. She told me that meditation comes in many forms and it can be anything. It could be spending time playing with my dog. Going for a walk. Baking. Photography. Activities that clear my mind, and allow me to be present in this moment.

When I bake, I feel the dough forming in my hands. I work it, shape it, create something from nothing. When it comes out of the oven, there’s a sense of accomplishment because I did that. I created something.

I stare into my dog’s eyes, and the world disappears. He runs to fetch his toy with a look of pure joy, and my heart explodes. In that moment, I’m happy.

With my camera, I’m going outside and actively searching for beauty. Instead of getting lost in my head, I see what’s around me. I feel the air and smell the rain-soaked ground. That moment recharges my battery.

I’m experiencing these moment without judgment. I’m not worrying about what my blood tests will say. I’m not focused on the pain in my legs. A world of troubles falls away and I’m feeling, seeing, experiencing what’s right in front of me.

This stranger I met on a quiet trail redefined meditation for me. It’s a deep breath after a long day. It happens in the simple moments. It happens when we allow ourselves the freedom to breath.

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Huggers! Am I Right?

They stalk their prey with wide eyes and bared teeth. Like sonar, pinging off a target, their voices rise to an octave that could break glass and shatter stone. They come closer. Circling. Cackling. Corralling their victim with glee and guile.

The prey frantically searches for an escape. Their heart races. Beads of sweat roll down the back of their neck. Mouth opens to call for help but horror silences their desperate scream. They slowly exhale as a quivering resignation takes over. It’ll be over soon. Please, let it be over. 

Flailing arms pull them into a suffocating embrace. Claws clap against their back. There’s a wince. They try to pull away, but the creature holds on tight. Flesh against flesh. Two bodies entwine. Oh, darkness! Where are you, my old friend?

Huggers.

Yes, my friend, you’re an interesting breed. I’ve observed you from afar and far too close. You’re intriguing and terrifying. Like a nature documentary, I’ve watched you with interest. I try to understand your wondrous ways but fall short.

I have one, simple, question: What the hell dude?

Why do you feel the need to press your body against mine? Touching, pulling, squeezing. No, perv, I haven’t been doing it wrong. Just watch a hug. Bits touch bits. Arms strangle the life out of… That’s getting away from me.

The compulsive desire for a physical connection is baffling. No, I’m not talking sex. This isn’t about the survival of our species. It’s not about titillating our fancies. It’s a simple, uncomplicated, hug. 

When someone hugs me, it takes every ounce of self-control to stay present. I try not to flinch. I put a smile on my face and take this socially accepted greeting with gritted teeth. The strain pushes my voice up to an unnatural octave. My body is stiff. My arms are awkward. Internally, I cringe and count the Mississippis.

When it comes to touch, my chronic illness has taught me one thing: It hurts. When I was younger, and someone put their hands on my body, I knew something bad was about to happen. The smile on their faces, pleasant voices, and gentle words were a disguise. They were trying to be kind, but the kindness was a lie. They needed me to hold still so the procedure could go smoothly.

The hug that followed, whether it came from my parents or someone else, was needed but it didn’t bring comfort. One kind of touch became the same as any other. I was just a kid. I didn’t understand that they were trying to save my life. 

They were doing the right thing but the right thing meant hurting me. Touch equaled pain. Hugs were a by-product of pain. Touch was bad. Hugs were bad. The math was simple to a scared little kid.

I’m venturing a guess, tell me your experience in the comments if you like, but most of us have a reason why we don’t like to be hugged. Something has happened to us. We were forced to do the math. Touch equals pain and fear. 

The mere thought of hugging someone causes a physiological reaction that travels along raw scars. I feel a flash, a burning, just behind my eyes. My heart skips a beat. My breath catches in my throat. Fear. Self-ridicule.

I tell myself it’s just a hug. I know, intellectually, that touch doesn’t always equal pain. I remind myself that this is a normal, kind, gesture. It comes from a good place. It’s going to be okay. They aren’t trying to hurt me. They’re trying to show love.

Still, in those seconds before the hugger pounces, that same flash of fear rears up. I would prefer a handshake. I would love a moment to breathe. A warning shot would be nice. I have a friend who always asks me if it’s okay. He gives me the power to call the shots, and I love him for it.

To all you huggers, while I’ll never fully understand you, I envy your ability to connect. You have this incredible freedom to express yourself with words and actions. Your desire to reach out to someone and hold them is weird, magical, and beautiful. 

Just, maybe, ask first. 

If we say no, please understand it’s not you. We probably think you’re really cool, awesome, and kinda badass. You’re someone we’d like to get to know, but we need time to get comfortable and feel safe. Until then, please accept my awkward smile and handshake. Sorry if my hands are a little sweaty.

To all my socially awkward friends, you’re not weird. Different is good. You’re not an alien stranded, all alone, on this strange planet. There are others and just like you, we’re trying our best to blend in. We even succeed ten percent of the time. 

Okay, the numbers aren’t great, but we’ve all gotta start somewhere.

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Can You Hear Me Now

I’m the type of person that gets lost in daydreams. I spend hours staring up at the sky. My happy place is curled up with a decent story or walking alone on a quiet trail. I’m a thoughtful, sensitive, introvert who’s comfortable with the silence.

I also talking about geopolitics and the complexities of international trade. I want to hear different points of view. Hearing how you see the world fascinates me. It intrigues and, at times, baffles me. I still enjoy listening to different voices sharing complex ideas.

These opposing sides of my personality conflict with the way the world operates. Conversations, for example, rarely involve a peaceful exchange of ideas. We’re not sipping espresso in the study. Civil discourse flowing while the fire flickers lazily. Holding onto an opinion with a firm grip but an open mind. Ready to learn. Prepared to defend. Ah, the fine art of debate!

The dialogue starts casually but it quickly picks up momentum. Faces flush, sweat glistens, and fists clench. It reaches its peak with phrases like: “Only an idiot would believe…” Or, “How stupid do you have to be…”

My tender heart calls it arguing.

Some people call it an intellectual exchange.

Quiet voices are drowned out by those who’s ability to scream is all they need. The balled-up fists a sign of strength and therefore validity. Red, sweaty, faces with clenched jaws and squared shoulders? That’s someone who knows what they’re talking about! Just look at the absolute certainty of their convictions. Passion equals righteousness. 

When these discussions start, I fold inwards and will my body to disappear. I can’t keep up. Not because I’m doltish or don’t have an opinion. I do! I have things to say and questions to ask. These are important issues and I want to learn. There are causes I’m passionate about. I have opinions, but my voice is too soft. My heart is too delicate.

I’m not loud enough, strong enough, to venture onto their battlefield. Their voices rise and I become quiet. Their fists clench and I hug myself tight. Sweat clings to their faces and tears cling to mine.

Some live for the fight.

Sometimes, I think the fight could kill me.

I know what you’re going to say! I’ve already heard it. Toughen up, sweetheart. Grow a thicker skin. This is how the world works. Keep up or get outta the way.

Get out of the way. Yeah, I tried that. I’ve hidden in my dreams. I’ve disappeared into my stories. I’ve gotten lost on my quiet trails. I’ve let the world pass me by because clearly I’m unworthy. I can’t yell. My fists don’t clench. You can hurt me. You’re not safe.

I believe that words matter. They have power. They can make people bleed. They take peoples lives. We use them as weapons to protect our thick skins. We hide behind them because that’s the way the world works.

Except, when we break it all down, there’s one thing we all want: We all want to be heard. We need to feel heard. We need that connection. It’s how we become better versions of ourselves. It’s how we will, hopefully, move past our difference and create a better world for everyone.

Having a soft voice and a tender heart doesn’t make our need to be heard any less valid. It doesn’t mean we don’t have anything to say. We have opinions, feelings, thoughts about the world around us, but the world around us is just too loud.

We all have this innate need to prove that we’re smarter, better, stronger, faster. Why can’t we stop and listen? No, we don’t have to agree with each other. We don’t have to accept the other person’s point of view. Hell, we don’t have to like what’s being said or like the person speaking.

But we can listen without surrender. We can hear each other without losing our way. There can be disagreement but why does it have to lead to a victory? One walks away a winner. The other? At some point, we need to stop and look at the bloody mess and decide if it’s worth it. 

Maybe it is! Some things are worth bleeding for but what if there’s another way? What if we can change the means and get to the same end?

If we all want to be heard, why don’t we try to listen? Fight our base instincts and shut our mouths long enough to hear each other out. 

Don’t listen for our cue to interject with a witty rebuttal. Hear the words. See the person. Disagree without tearing each other down. Try to understand and if we can’t do that, then show an ounce of respect. Maybe even in a little compassion.

If you’d like, share your thoughts in the comment below and I’ll do my best to hear you out.

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The Plague

It’s not hypochondria if you really do get sick all the time. Isn’t that what all hypochondriacs say? But it’s true! Argue with me all you like but I will not be swayed. My position is firm. My feet are grounded. I am not a hypochondriac! 

Yeah, I run out of a room when someone sneezes. So what? Maybe the high-pitched scream was unnecessary. Flailing my arms was a little over the top. Sure, I didn’t need to scream, “The plague! The Plague!” 

One could argue that it was a public service announcement but whatever.

If you have the sniffles, cough, or a slight itch in the back of your throat don’t come near me. Stay far away. Another galaxy perhaps? Fine! That’s, “Too Far.” How about a hazmat suit? They look comfortable, and it’s only for the remainder of the incubation period.

It’s not an overreaction! I’m not trying to be dramatic. No, still not a hypochondriac. Why? I really get sick all the time.

After my kidney transplant, I was put on anti-rejection medications. Our immune systems can’t tell the difference between an infection and a life-saving transplant. If it’s not weakened, it will attack the new organ and the body will reject the transplant. Anti-rejection medications lower the immune system and protect the kidney. 

I take my medication twice a day and my immune system becomes a weak, little, puny, useless, piece of… Wow, that’s aggressive!

My immune system doesn’t have the strength to fight off infections, so I get sick a lot. If something’s floating around, I’m going to catch it.

Mm, yeah, that’s a nicer way of saying it.

Hypochondria is a fear of having a serious, life-threatening, illness. I already have a life-threatening illness so being afraid of the thing that’s inside of me isn’t unreasonable. I really do catch every contagious disease known and unknown. Being afraid of getting sick is understandable. Sure, every time something twinges, I assume I’ll be dead by noon but who doesn’t? 

Maybe I’m a little gun shy. I’ve gotten sick so often that I automatically expect the worst. Colds, the flu, childhood diseases that pay a second visit. Swine flu? Yep, had that too and I’m a vegetarian.

But was I surprised? No!

It can’t surprise me because I’m all ready planning ahead. I know it’s out there. I can feel it stalking me like the Yeti tracking Santa. I heard a twig snap, and I’m ready to run.

I hate running and there’s only so many hazmat suits available to the public. It will get me but at least I’m ready for it. If it can’t surprise me then it can’t hurt me as much as it did last time.

How’s that working out?

Great. Superb. I’m an all-round hot mess. Turns out bracing for impact doesn’t help. We can stock up on supplies, buy a suit off of a sketchy website, but when it hits, it hurts.

It could be a cold that lasts six weeks. It could be a phone call saying the blood tests are a little off. Big or small. Life-changing or just something that puts our lives on pause. We’re always ready.

Having a chronic illness becomes a master’s degree in crisis management. Every trauma creates a hard shell around our hearts and minds. It raises our defenses until we’ve convinced ourselves that next time will be different. The next flare-up or the next set back won’t hit us as hard. We’ll be ready. 

Except, living in a constant state of emergency preparedness doesn’t make it hurt less. We still feel the pain and we miss out on the good days. The special days, when twinges stay quiet, become meaningless. Those moments, when we can forget that we have a monster living inside of us, become hollow. These precious hours when we’re free to be happy, come and go without notice.

Wouldn’t it be great if we could just enjoy days like that? Live inside that moment without getting ready for the next. How about just being content with the next five minutes without worrying about the next five days? 

If preparing for the impact doesn’t help then maybe it’s okay to ease up a bit. Put the hazmat suit in the closet. Don’t banish our disease-riddled loved ones to another galaxy. Walk out of a room instead of running away screaming. 

Maybe it’s okay to let go of the worry for a few minutes. 

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I Will Have Order

I like it when my day is planned out to the minute. That’s an understatement! I need it? Yep, that’s better. Underline, caps lock, highlight it because I can’t tell you how much I NEED order.

I get up at the same time every day, and I don’t set an alarm. My eyes open with a predictability I find annoying and comforting. I eat the same thing at the same time: Cereal with a splash of milk. I round out my culinary genius with a handful of pills. Mm, yum!

Next, a 10-minute shower. Please don’t come for me! I know I should conserve water, but it’s so warm and the world is so cold. (I just sighed very dramatically.) Once I’ve contributed to the downfall of our species; I throw on something comfortable, try to look like a functional adult, and take my dog for a walk.

You could say my life is structured or rigid. I prefer: Organized to optimize what little control I have over my life and sanity. Yes, it’s a bit of a mouthful, but it works for me. One question: What if my schedule changes?

Is that a trick question? Are you trying to be funny? No, you’re serious. Right, well, I was going to give you a chuckle but whatever. Sorry, what was the question?

Change it? Why, why, why? I don’t…That’s just crazy talk! Change? No. No. No. Haha, you so funny! I can’t breathe. Is it getting hot in here?

Purposefully altering a meticulous plan? Really? Seriously? That’s banana pants! Why mess with something that’s sorta, kinda, almost working just fine?

  No, it’s not perfect.

  Yes, I wish I was more flexible. 

It might even be fun to do something different just for the giggles. Maybe get out of bed at 8:15 instead of 8. Would that kill me? No, but that doesn’t leave much time for breakfast, a shower, and what about the dog! Did you think about the dog?

Okay, maybe I have a problem.

My rigidity, quirks, ticks were born out of desperation rather than madness. They help me catch my breath for one second. They are old wounds that are just starting to scar over. These idiosyncrasies make sense when everything else doesn’t. 

A doctor butchered my insides when I was three years old. He left me with failing kidneys and a body covered in scars. I’ve been cut open with and without anesthetic. I’ve died multiple times. I can’t even tell you how many needles have pierced my skin, or how many tubes have been stuck in places.

None of it makes sense. 

There’s no logic to any of it.

My whole life has always been out of my control. I couldn’t stop any of it from happening. I was just a kid. I was too small to fight. I didn’t understand why they were hurting me. I didn’t understand the bad things I was seeing. They were trying to save my life, but it hurt. I couldn’t make it stop.

Now that I’m an adult, I understand that these tests, procedures, and surgeries are necessary. I have a say in what happens. There’s a bit more control but I’m still choosing between living and dying. What kind of choice is that?

I have a desperate need for any semblance of order, and I crave stability. I schedule everything and when that get’s thrown off I’m flooded by horrible images. Memories come rushing back. My scars burn. I have to fight the rising panic.

We’ll all despair and die! Wow, dramatic much? 

Yes, I have a problem but I’m trying to… Oh boy… Give me a second…No, I can say it. I’m trying to: Change. There it is! Got it out. Just gave myself a high five. You go, girl! I didn’t throw up that time.

Speaking of progress! I went on vacation awhile back. I haven’t been on one of those in years. I left behind my predictable, comfortable, life, and went out into the big, mean, terrifying world. My schedule wasn’t just disrupted; it was obliterated. You know what happened?

Not a damn thing. It was fine. You’re all right. I’m all right. The earth is still spinning. Birds are still flying. Hellfire didn’t rise up. Death and despair? Sure but the numbers didn’t go up dramatically so, you know, yay.

Oh, I had fun! I went away with a good friend, and we explored strange lands. All I’ll say is this: The black stump wiggled, and I handled it really well. That’s a lie. I panicked but at least we weren’t eaten by a bear. I mean, stump.

I was forced to bend and I didn’t break. A few waves of anxiety, a couple of panic attacks, but I handled it. Once I got out of my own way, I enjoyed myself. Who knew? I’m capable of enjoyment. Will wonders never cease!

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Double Shot

I was three years old when I was diagnosed with chronic renal failure. There was a mistake, an ego trip, and it all led to my life being interesting? Is that the right word? It wasn’t…boring?

Wow. Okay. No, not even close, but I do understand the confusion.

All you hear about are the exploding life bombs. Trips in ambulances. All those surgeries. Stays in the ICU. High adrenaline, shot of fear, kinda stuff that’s straight out of a tv show. The other stuff? Well, commercial break!

Do you want to know what living with a chronic illness is really like? Here are some cold hard numbers. Facts and figures. Irrefutable enumerations that I just made up. By my questionable and dubious mathematical skills, I calculate that life with a chronic illness is: 90% boredom, 7% dread, and 3% WHAT FRESH HELL IS THIS!

I can’t even count how many hours I’ve spent in plastic in chairs, on hospital beds, or cold hard gurneys. Sitting there, or laying awkwardly, staring off at nothing while I wait for something to happen. Killing time by counting ceiling tiles or getting groovy to the beep of some damn machine.

You thought elevator music was bad? Ha!

Tv makes a hospital look like a nonstop thrill ride. The stakes are high. Every second counts. The music is fast and our hearts race. Live damn it. Live! Crap, I’m running out of popcorn.  

As a real patient, with a real illness, it’s less enthusiastic. I spend most of my time waiting for something to happen. Then, I wait for my life to adjust to whatever the hell just happened. It’s a merry-go-round with a little more scary than merry.

The fresh scars become a part of this new life. I get used to whatever pain lingers. I settle into a new reality that’s only slightly different from the one I was living. What else can I do? 

It’s not like I can exit stage left and leave it behind. The credits don’t roll. I can’t hang up my costume, wash off the makeup, and get drunk with my costars. Real-life, that little bitch, doesn’t work that way.

So I shake it off, get used to walking with a bit of a limp, and keep on going. Pain becomes normal. The scars fade. The story becomes vapid and, damn, if I have to talk about it one more time.

It all becomes so boring. 

Except for that ounce of dread because it’s going to happen again. I know it’ll happen again. It’s inevitable. It’s a part of the deal. The shoe will drop. The cannon will sound. War drums will beat. At some point, all hell will break loose. 

It’s all or nothing. Nothing happens for hours, days, weeks, or years and then boom! The first shot is fired. The fight begins without warning. 

Pain or the burning grip of imminent death. A ride in an ambulance. Prayers sent to the guy on top of the thing. Fists clench in a desperate attempt to hold on for one more breath.

90% boredom.

7% dread.

3% absolute terror.

Even the fear becomes normal. We get used to the rush of adrenaline. That taste of death, stinging the back of the throat, doesn’t bring a whimper but a sigh. We rationalize the moment and boil it down to something more palatable.

My Gran used to say, “This too shall pass.”

I don’t like cliches but this one stuck. This time tomorrow, one way or another, it’ll be over. I’ll have survived or not. It’ll be over. This moment won’t last so hold on for one more minute.

It’s the one thing that helps me find my feet and walk into another operating room. “This time tomorrow it’ll be over.”

When I was bleeding out and we were waiting for an ambulance it kept the fear in check. “This time tomorrow it’ll be over.”

When my heart races, my chest tightens, and panic crashes through me it’s the distant voice that brings some calm. “This time tomorrow it’ll be over.”

Calm in chaos.

Stability in instability.

Certainty when uncertainty takes over. 

I need calm, stability, and certainty but having a chronic illness means those things are as mythical as fairies, unicorns, and tv shows. They’re fun to dream about but reality is always there. It nags. It tugs on my pant leg. It pokes me in the ribs. I have to wake up and face it. 

I wouldn’t mind staying in that magical world for a few more minutes, hours, days. Years would be too much to hope for right?

When life gives us more shit than giggles there’s only one thing to do: Get a shovel. Go digging for a version of calm, stability, and certainty that’s strong enough to keep our heads above water. 

For me, it’s a silly saying my grandmother got from her grandmother. It’s my family, friends, dog. It’s a faith in God, science, the planet, and mythical beasts if you know where to find them. 

If we dig deep enough and look hard enough we’ll find something to hold on to. It doesn’t have to be magical, spiritual, or mythical. It doesn’t have to be all that big. It doesn’t have to be something we can explain.

It’s personal. It’s something that connects us to that special place where hope hides. It’s a hand that holds onto us long enough for this moment to pass. With any luck, it gets us back to good. Eventually. Hopefully. Knock on wood.

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Can You See Me Now

Have you ever been invisible? Looked through. Talked over. Scream and shout but no one hears you. Seriously consider walking through that wall over there because you must be a ghost. 

When my kidneys shut my body followed. My bones became brittle and every step created micro-fractures. My heart doubled in size. The fluid around my brain, cerebral spinal fluid, increased and I started having seizures. 

Walking was extremely painful. My heart ran too fast and then too slow. I had a constant headache and my vision would blackout. I was too sick to walk far so I spent most of my time in a wheelchair. 

Funny thing happens when you sit down in a wheelchair; you disappear. Where’s Waldo? Well, damn, he’s sitting in a wheelchair. How the hell am I supposed to find him?

Sitting on a sofa, office chair, or on the fence didn’t do it. When I was in a “normal” chair I was seen and heard. The wheelchair? Poof. Gone. Magic is real!

Here’s a perfect example. I was in the hospital and a friend of my parents came to visit. I was in my room, sitting on my bed, and we talked. They cracked a few jokes and I laughed when it seemed appropriate. Things were fine. It was a good visit.

Then they decided to go down and get some coffee.

I got into the wheelchair and the second I sat down everything changed. We went down the hall, my dad pushing me, and down the elevator. Through the lobby and the conversation continued over my head. They talked about me but never to me. I wasn’t there. I’d vanished.

A question was asked and I became a pronoun. No name. Just: She.

Eventually, my dad turned to his friend and said, “She can hear you. She can talk. She’s perfectly capable of answering that question. If you want to know just ask her.”

Hi Dad! Love you!

Deer in the headlights. Mouth opened and closed. Eyes wide. He looked down at me as if I’d just rematerialized. Oh, what wizardry is this? Egads!

For him, and a lot of other people, going from one chair to another dulled my ability to speak. As if interacting with me, while I was in that chair, wasn’t a remote possibility. Had my mind had melded with my ass? If one does not walk one must not be able to talk. 

I tried to remind people that I was there but it became too exhausting. Now, I’ve always been shy, quiet, but I became withdrawn. I disappeared into a book or my own imagination. My thoughts kept me company. The stories I read, or the ones I made up, were my friends.

The ghosts in my head became more appealing than the outside world. When I’m with them, I’m seen, heard, respected, safe, and physically whole. Why would I want to live anywhere else?

Yes, the micro-universes my brain creates aren’t real and, sure, it’s not the healthiest coping strategy. But when the real world can’t see us and when it isn’t safe? Living in a reality of our making feels like a warm blanket. 

Then again, there’s a chance the vail could lift. The magic cloak of whatever could get blown off and ta-da! I see you! Sitting right there! Looking spiffy my friend.

It only takes two seconds to say hi, smile, or just nod. Hold the door open for someone because we have a free hand. Small, simple, things that let them know that we’ve seen them too. That’s not too hard, right?

For me, there have been days when something as simple as a smile and a little eye contact made my day. Like, my whole day! It was horrible up until then but they looked me in the eyes and smiled. 

I got out of my head, went outside, and they saw me. They smiled.

I’m not invisible. A Ghost. An entity stuck in the time-space thingy. I’m a nerd, duh, but I’m real. I’m alive. I’m here. I’m right here. You can see me right? Whew! For a second I thought I was stuck in the Timey Whimey… I’ll just stop.

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About Me

Hey there friends! My name is Keri-lee Griffiths and I’m a recovering human being. 

I was diagnosed with a chronic, life-threatening, illness at three years old. I’ve had three kidney transplants. I’ve been clinically dead multiple times. I’ve had more surgeries than I can count but I’m still here.

Somehow, for some reason, I’m still alive.

People have asked me about what I’ve been through but I’ve always shook my head and changed the subject. It’s not something I’ve wanted to face or relive. Talking about it made it seem more real or maybe I was just too tired of the pain to talk about it. I’ve spent many years running from my life but it’s time to stop and face it.

So here I go. Opening up about what it’s like to live with a chronic illness and maybe a few things I’ve learned along the way. 

Please be good to yourself and each other.