Hey, I'm Jason. I'm a chronically-ill-super-freedom-loving-medical-self-journalist.
Dialysis is such a fascinating subject. Magnificently barbaric, but fascinating nonetheless. The treatment is quiet, almost non-detectable to the layperson. I think dialysis ought to be more out to the world, rather than a whisper of a medical condition. This post is about something different–let’s just put a pin in it, shall we?
Instead, let’s discuss my insecurities. Because I save the good stuff for you, dedicated reader.
This is my blog. I should be able to write about anything I please. So it’s with a titch of frustration I find myself conflicted when I want to write about “non-dialysis” topics. My desire to please other people sometimes taints the color of my writing. I should be able to explore topics which do not directly touch dialysis.
After several days of thought, though, I conclude there isn’t anything which does not directly touch dialysis. I perform dialysis 24 hours a day. At home. Like a badass. Like Snakes on a Plane badass, like every other bad ass person on dialysis. I can stand in any given place at home and visually find signs of dialysis. If you touch my life, these days, you touch dialysis. You may want to wash your hands.
When my friend Shawn died last month, I knew I would want to write a post in his honor. I want this edition to be about him, but I need for it to address PD. If everything I touch is fair game, though, what’s the problem? This, right here, is the problem: Shawn and I spent years together, but he never directly touched dialysis.
Shawn knew me best in the early stages of my disease. I’d been diagnosed and given the old, “you’re going to need a transplant” talk, but my kidneys would ultimately last five years – just enough to get through (almost) all of college. Most co-eds never knew of my kidney disease. Afterwards, once my first year of dialysis began, I lived close enough to Shawn to road trip it to Iowa, for the weekend. We would party and dine and generally lay waste to a small town the locals proudly called the tulip capitol of the US. My fingers would be alcohol-swollen sausages by the time I got back to Kansas City on Monday. I knew I faced a rough dialysis treatment, but I never shared this with Shawn. Later, after my transplant, I was able to visit more freely, but I was literally throbbing with anti-rejection medications. I’d wait until I had a private moment and I’d choke down pills. I’d secretly avoid a germ-filled area or moment, clumsily attempting to keep myself infection-free. (You see, even a transplant has its down side.)
Shawn was one of the brightest stars I’ve known. He was vivacious and fabulous; caring and humble. He taught me to care less about what people thought and just have fun. Shawn told the corniest jokes and totally got away with it. It was so easy to be by his side, to be his friend. Living through days with Shawn was like living in a force field of fun; all things not completely hedonistic bouncing away. He was a superhero.
What’s more, I loved Shawn in a way not every Missourian understood – he was gay and it was a different time. Not everybody (there or here, then or now) believes a straight guy ought to be hanging out with a queer one. Whatever. One time I encouraged Shawn to purchase a Playgirl at the mini-mart, because “joke’s on you, country gas station attendant.” We cried with laughter as we pulled away. The attendant was just lucky to be part of it, if you ask me, dumbstruck as he likely was. We were all lucky to be part of Shawn’s life. Why would I hinder this magic with talk of dialysis?
Losing Shawn feels a bit like losing a time when I could avoid talking about my disease. A time when it was reasonable to not talk about illness. An era when I could hide the bollocks. Shawn was quite sartorial and I imagine, now, he saved a soft inner pocket in a fine suit coat where I hid from everything. I look back on my time with Shawn and for a moment I can laugh—but then I return to devastation. One of my safest pockets is gone.
We are not, as a general rule, supposed to say, “I should have died first,” but let’s face it, Shawn should not have died before his friend with kidney disease.
We dialysis patients know. Death is always near. Our disease, at its worst, is considered Stage 5 Kidney Disease, but the medical community calls us “End Stage Renal Disease” patients. “ESRD” sounds a lot better, so that’s what we all use. Hell, I say ESRD casually every time I meet a new doctor. Stop to think about this and the fact of the matter is, this phrase starts with “end stage.” The end of what?
Losing a close friend from college is an end of innocence; once friends from college are dying, what does that mean for the rest of us? What does this mean for the ESRD patient? What does this mean for me? Phew, that’s a lot of questions. I would very much like to discuss these things with Shawn, but he is gone. This is my first real lesson on death, I guess. The learning curve is steep.
Shawn’s memorial service is this coming weekend (one of many, I’m learning – turns out he can organize parties even from the afterlife, he truly had the gift of celebration). It’s in Ohio, where Shawn was star Associate Vice President for College Relations and Public Affairs at Kenyon College (fancy title, you did good, kid). For a variety of reasons, I cannot attend. Dialysis is certainly one of those reasons. So. There. Now dialysis has finally directly touched Shawn. But I cannot.
This is my blog.