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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.