“What hobby helps improve your quality of life and helps you forget the many challenges kidney disease presents?”
When I arrive at the DCI Clinic in Crowley, Louisiana, the staff always gives me a friendly greeting, but makes no move to start my treatment for the first several minutes.
Because I’m one of “them.”
The Odd Ones.
Oh, don’t pretend you don’t know what I’m talking about. Every clinic, in fact, every patient shift, has at least one Odd One. We come in different colors, shapes and sizes, and our eccentricities are as immediately recognizable as the ringtone on our teenager’s cell phone. From Ms. Mary’s garlic-sardine radish salad every Monday, Wednesday, and Friday (made fresh every Sunday), to Papa Joe’s noisy domino game (“Big Six! Now take that!”), played solo on the chair-side table, our oddities and profundities are the stuff of legend.
We see you, we Odd Ones, when we walk in, looking over your eyeglasses at us. You’re hoping against all hope that somehow, somehow, during our day off, we’ve been converted from the mad eccentricity that possesses us. But in the words of New Jersey hit man Vito the Enforcer,
Why, you may wonder, are we so strange? Why do we insist on clinging to our quirks, our anomalies, our…our…oh, just say it—our kookiness?
I’ll tell you.
No matter how long we’ve been on hemodialysis, no matter how many times we’ve smelled the antiseptic and heard the whirs and clicks and soft beeps of the machinery, it still bothers us more than we care to admit. It’s not really the needles or the sight of so much of our blood leaving our body…
…well, that is a bit creepy….
But I digress.
It’s knowing that what once was a simple matter of five minutes and a quick flush in a bathroom stall is now a process—a process that takes three and a half (frickin’!!!) hours, involving people we probably wouldn’t trust not to squirt the last of the liquid soap in a public restroom, inserting needles in our arms with the oft-told lie, “A little stick!”
It’s not knowing when our access will clot off and we’ll have to go to the ER and wait for hours, hoping that the surgeon who’ll fix the problem isn’t as wet behind the ears as the bubblegum he’s chewing would indicate.
It’s knowing that barring a miracle, the rest of our lives will revolve around a reclining chair and a quarter-ton rectangular box that’s designed for the sole purpose of taking our blood on a sterile, macabre roller coaster ride that we’re told removes wastes and excess fluid from our bodies (but how do we really know? At least the old machines had a drip tube you could stick in a jug and measure, for God’s sake!), while we wait to hit the jackpot on the Transplant Lottery…which simply means that in the midst of our rejoicing, another family grieves…and now we’ll have to learn how to keep alive the death that lies inside us.
And so we cling to what you view as strange behavior for one simple reason:
It’s ours, and it’s under our control. When Ms. Mary opens her bowl of salad, keep in mind that she mixed it herself, with no doctor or dietician looking over her shoulder, tut-tut-tutting about potassium levels or—horrors!!!—the dreaded Demon Phosphorus. She controls it, and no matter how much it reeks to high heaven and makes the particulate alarms go off, it’s her small measure of comfort and a reminder of how she once prepared food for her family.
When Papa Joe plays Big Five on Three-Four and winks at himself, he’s not cheating. (Well, he is, but that’s not the point.) He plays dominoes and yells because that’s what he did when he was young and strong and popular, and it’s the one thing he has left that’s truly his.
Well, as I conclude this essay, you may have been wondering what my oddity is. What hobby helps “improve my quality of life and helps me forget the many challenges kidney disease presents?”
When I walk in, I place my roller bag on my chair and begin to unpack. Snack, drink, headphones, and, finally, my HP laptop computer. I sit, and then the staff person assigned to me, like a spider approaching an unfortunate fly caught in its web, begins the task of connecting me to the hemodialysis machine for treatment. When she’s done, I begin.
I’m a writer. I write prodigiously. I write with passion, as well as compassion. I write blogs, both political and humorous (well, at least I hope so!). I’ve written two books, and I’m working on a third. I write poetry, songs, and instructions on various aspects of life and living. I write because that sets me free from the chains that masquerade as tubes. And even if one day God blesses me, as I believe He will, and I’m set free from these sterile fetters, I shall continue to write, for my gift transcends my condition.
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