In the beginning I was a painfully shy, embarrassingly awkward, and endlessly imaginative little toothpick of a boy who was completely unaware of the shenanigans deep within the recesses of my fist-shaped kidneys. Simply put, they were lonely.
They yearned to live beyond themselves and create offspring. Unfortunately, their attempt to spawn led to horribly unforeseen circumstances. Instead of fostering fellow filtering systems, they ended up inviting harmful and rather unpleasant cysts to invade their nether regions. Thus began my fateful journey as a reluctant survivor of kidney disease.
In glancing back through 38 years of narrow grafts, bulging fistulas, soul-draining dialysis and life-granting transplants, here is the wisdom and advice I’ve garnered through reaching nearly half century of survival on this spinning blue ball of happenstance.
You Are NOT Your Kidney Disease (and Vice-Versa)
During my third year of endurance squirming in that plain beige chair, planted on those egg white square foot tiles, surrounded by bland pictures affixed to off-grey walls, an epiphany of sizable proportions struck, nearly toppling my dialysis machine.
My identity had been completely engulfed by my condition.
From conversations to social media to navigating daily life—the physical side effects had managed to burrow themselves deep into my psyche and manhandle my personality.
With this knowledge fully realized, I returned to the Stacy Basics by reacquainting myself with what made life thrillingly fantastical for me: engaging film classics, politically incorrect conversations, and the complete satisfaction of a well-digested taco.
Fatigue, chronic pain, nausea, weakness and fourteen other ailments associated with kidney disease will combine forces to steal what you so richly deserve. Reignite your passions and allow them to be the personal distraction from your present state of existence. Failing to address this will drown you in confusion, invite depression, and rob you of everything that matters. Trust me, I know whereof I speak and I don’t wish the same for you.
Strengthen Your Backbone
Human beings cannot deny human nature. More specifically, whether it’s medical personnel or random patients, people may associate your weakened physical state with a lack of personal resolve.
Whether you’re stepping past that imposing fire door entrance to the dialysis clinic floor or undergoing tests to qualify for the vaunted transplant list, you will have to be your own singular advocate for your treatment and well-being.
For many treatment sessions, I was forced to be seated far too close to King Dullard. Once the needles had invaded his arm and his blood was making a mad dash to escape his presence, he would turn HIS MUSIC up to FULL VOLUME because he was ENTITLED to said BEHAVIOR.
There was also a gentleman who I privately referred to as Shuffling, Hulking Tech who would ignore my suggestions for needle insertion, claiming his technique was fostered over twenty years of experience, and he would go full bore into my arm causing pain, bleeding, and discomfort.
Speak up. Defend yourself. Don’t take any guff from anyone. ANYONE.
For bonus points (if you can control your understandable anger) approach the proper individuals with a calm, measured tone, but with a look in your eyes that shows you mean business.
Embrace Warmly, Nourish Often, and Never Neglect Your Best Friend: HOPE
“Remember Red, hope is a good thing, maybe the best of things, and no good thing ever dies.” – Andy Dufresne, The Shawshank Redemption
If there’s any film that has ever been created that symbolizes the shock, struggle, and eventual redemption of an individual fighting to survive harrowing circumstances, it’s this one. Hope is the guiding force of the entire narrative and I have found that it completely encapsulates what we are enduring without directly referencing our circumstances.
Hope flickers when you successfully complete a dialysis session and travel home refreshed. Hope flutters when you finally find the perfect altruistic donor to save your innocent life. Hope flatters when the phone call you’ve been waiting endlessly to arrive rings true with the offer of a healthy kidney transplant.
Yet hope flounders when you cease to acknowledge its presence.
My hope for you is to stand tall, acknowledge your worth and fight for every smidgen of health you can.
YOU deserve it. And I’m rooting for you wholeheartedly.
And that, my fellow Kidney Warriors, is how you freaking win.
Listen to Stacy reading his essay
“Stacy’s kinda weird. Silly and funny and awkward and weird. And, like, really sleepy. We don’t go on many adventures cuz of that. When I woke up I was really scared and confused because there were four other kidneys in here just like me, but, um, well…not like me at all. Two were born ready, but Stacy said they gotz sick. So his Mom’s kidney is over there and his sisters’ is right near me. I talk to them, but they never talk back. It’s kinda lonely. Stacy makes me sad sometimes because he doesn’t feel like he deserves any of us. And sometimes, on the good days, we have lots and lots of fun together.
I think I’m done now. Did I mention he’s kinda weird?” –Filbert the Kidney
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