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.
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.
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.
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.
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?
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.
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.
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.
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!
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.
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.
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.
Being diagnosed with a chronic illness has a profound impact on a life. It’s a thunderclap that reverberates through our bodies, minds, and families. It enshrouds our lives and takes over. It becomes our whole world.
Before my diagnosis, I was a normal kid. I loved going to the beach, playing with my dog, and riding our pet tortoise. Yeah, we had a tortoise. He was my best friend until he ate my mom’s roses.
Sad day for the roses.
Happy day for the tortoise.
What else? Oh, I loved climbing! If it went up, I had to see what was at the top. I teased my brother and cried when he went to school without me. How rude! Sure, I was only three but I was precocious! Wasn’t that enough?
There was one, small, hiccup. A little bit of health problem that needed fixing. I had reflux. Urine went from my bladder back up into my kidneys. It’s supposed to go the other way. Kidneys to bladder and bladder to…Um… Well, you know.
It’s a simple surgery. Snip, cut, stitch back up and ta-da! Back to climbing trees and trying to sneak off to school with my brother. There was snipping, cutting, and stitching but then there was a mistake.
I was sent home to heal but the pain didn’t go away. I didn’t get better. I got worse. My parents took me to the doctor and begged him to help me but he wouldn’t listen. He was so sure of himself! He was a surgeon. A god. A man above reproach. They were just overprotective parents. What did they know?
Thank God my parents didn’t listen! They took me to a family friend who did an ultrasound and there, on the screen, was the problem. Instead of fixing the reflux the surgeon made it worse. Blood clots had formed. Urine couldn’t travel from the kidneys to the bladder so it stayed in the kidneys.
That mistake and ego trip caused irreparable damage to my kidneys. That one moment, one lapse in judgment, brought my life to a screeching halt. I was now a person with a permanent, life-threatening, illness.
Thanks for that Doc.
I’ve lived my whole life in this bubble of a diagnosis. It’s become my identity. It’s who I am. It’s the one thing people know about me. When I meet someone they usually say, “The kidney thing, right?”
The bubble grows and it takes over. It becomes a force field that blocks out calm, happiness, and hope. It clouds our vision until all we see is the disease. All we feel is the pain. All we hear is the beeping of hospital equipment.
It’s easy to forget who we are beyond skin, bone, and blood. It’s easy to lose our ability to hope, believe, and dream. That person, in a way, dies and we’re left with a diagnosis, a prognosis, scribbled on a prescription pad.
I’ve had three transplants since that mistake and right now I’m stable. I got my second, third, chance. The prayers were answered. The positive energy and good vibes worked. I’m alive but somewhere along the way I’ve lost myself. I’ve become my illness and this miracle. That’s who I am. It feels like it’s all I am.
It’s what people want me to be and who they think I am. I’m their proof of God, good karma, or the power of positive thoughts and energy. A living, breathing, symbol of divine intervention. A symbol of hope.
Words like “Miracle” and “Blessing” have become shards of glass. These words cut deep because I feel like I’m this thing people prayed for on bended knee. Not a person. Not a deeply flawed, damaged, hurting human being but an entity. A disease.
Whenever the real me comes out there’s a look of disappointment; like I’ve spoiled the punchline of their favourite knock-knock joke. The real me isn’t good enough. The real me can’t live up to the image projected on the bubble.
That bubble becomes a prison. All they see is a disease and it’s become the only thing I can see. It’s the only thing I’ve let myself see but I want more. I need more. I need to get out of this bubble.
I’m trying to free myself from the shroud of my diagnosis. There has to be a way out. Life has to be more than a disease or a mistake. One thing can’t define an entire existence. The bubble, the force field, the red letter diagnosis can’t be an unbreakable wall.
There has to be a way out. We aren’t prisoners to our past narratives. We have the power to change our story and create a future that brings us joy. That choice is ours!
What happened to us? That may have been out of our control but we get to control how it defines us. We get to choose how it shapes our future. More importantly, we don’t have to be hostages to that moment, mistake, or a life-changing diagnosis.
If you take away nothing else hear this: A diagnosis may be a thunderclap but it isn’t lightning. It’ll shake our lives but it doesn’t have to burn it down. As long as we’re alive we can move forward. If we’re moving forward then we can find a way out of this bubble.