Things You Don’t Want to Hear. Best You Read About Them Instead.

First Rule of Chronic Illness: Do Not Talk About Your Chronic Illness

In that case, I’m going to write about it.

I’ve test-driven a couple hundred-thousand beginnings for this piece, everything from quantum neo-existentialism to bikini-girl carwashes, and all the while the most applicable and inevitable choice pummeled the back of my brain like a battering ram until I cried uncle. So here — here’s where it started: Catholic school.

Or more specifically, the two or three overnight retreats instituted, much like academic credits, as eligibility requirements for sixteen and seventeen year-olds to receive the sacrament of Confirmation, a ceremony which, quite bluntly, is Catholicism’s ice-cold answer to Bar Mitzvahs as orchestrated by creepy panels of diocesan mystery mafias (picture a room full of scowling Karl Rove clones in clerical gear) and therefore leeched clean of anything outside the boundaries of choregraphed conformity and robotic traditionalism.

And so those retreats, those heavenly clambakes of teenagers who began the weekend as hostile strangers wandering a sizable slab of lakeside land up in the pine forested hills of Central Louisiana, provided some of my happiest memories in tandem with a few life-altering metamorphoses which, looking back through non-believing hindsight, make me wish I could time-warp back to those late winter nights and never come back.

But there were speakers, lots of speakers, young but grown men and women emphasizing a cruel and foolish message I’d heard and believed my entire life. There was no Who or What to prove them wrong — that was a lesson first foisted on me by an incompetent dullard and his sugarcane truck. But it was the snapping of my safety net that had me mulling over their message, criticizing its blatant inconsistencies with reality. Their logic went something like this:

God knew you before you were even conceived, and he crafted a specific and important plan for your life. Not a single hair falls from your head without his knowledge and permission. Surrender, and he will bless you in abundance. Nothing happens by chance. He watches over and ordains all things. You are the child of a father who will move mountains to protect his children. Something something desert Egypt.

Now it never occurred to me, growing up in the safety of a post-Nirvana pre-internet southern-fried Christianized bubble, to apply mental forensics to the above axiom. It wasn’t until I flew home from New York for winter break, eighteen years old, and was nearly killed in a rather bloody late night car accident with some imbecile and his cane truck that I realized, after a clumsy phase of spiritual gymnastics, that those messages I’d been taught before I even learned to write my own name were sketchy, to say the least.

Clearly, the problem was me. Something was wrong with me, or I was doing something wrong, or all along I was a poor unassuming piece of shit like Judas Iscariot fated, through no fault of my own, to live and die in hell, a theory reinforced months later when I was diagnosed with Crohn’s Disease (remember, this was in an era before all these overnight ubiquitous talk-to-your-doctor-about-twice-a-year-infusion-X commercials). So imagine a mega-Einstein emerging out of thin air and, with a single stroke on a chalkboard. instantly and irrevocably disproves every mathematical constant known to humankind. The quadratic equation? A steaming heap of horseshit. Pythagorean theorem? A bigger hoax than alien autopsies. Thermodynamics? As if.

In other words, reality kicked my flabbergasted ass so hard I woke up fifteen years later with Stage 5 renal failure.

It’s perfectly natural for healthy people, even medical professionals, to overlook, ignore, or never consider at all one critical truth inherent to friends, family, or patients who are sick, whether functionally so or waiting on their deathbeds for whatever’s next — and I can’t blame them. Everybody’s the star of their own Emmy-winning drama; everybody’s seething day and night, back and forth through the wide spectrum of human emotion.

And so are the people, like me, betrayed by our own bodies. Whether old or young, there’s an incongruency when compared to most other legitimate, devastating traumas, a universal etiquette applicable to sick people which, when practiced, might garner respect, tearful admiration, movie deals; but, if violated… Who wants to hear a sick person complain? Who wants to have to listen that genre of audible misery? If the subject is a cheating spouse, an out of control teenager, an all-consuming obsession to smash the pasty face of that vampire-looking motherfucker responsible for locking migrant children in cages — yeah, pull up a chair.

But you’re crying because you were just diagnosed with Parkinson’s? Uh — Oh dammit! I think I forgot to drop off those overdue library books gotta go bye!

Yes, yes, I know most people aren’t so insensitive. Your friends and family do care, they’d do whatever they can to help, but they can’t relate, can’t fully understand because there’s a stigma associated with explaining to others your physical adversities. And while I’ve had wonderful friends who were smart, educated, and mature enough to realize my limitations, there were others, like my eye-rolling ex-boyfriend, who scoffed and walked away at the beginning of my illness when I mentioned the increased risk of colon cancer, when there was nothing and nobody to help me, at age eighteen, to cope with this horror that seized me while I was still healing from my rendezvous with that sugarcane truck.

That eye-roll, followed by a lingering “Oh, please,” wasn’t a lack of compassion, it was disgusted contempt. It was what I could expect should I ever mention it again. It was when I realized that not only was I alone, but I had to muster a stalwart façade and do my damnedest to hide everything from everybody.

(Incidentally, I would indeed have full-blown colon cancer if not for the biopsies that pinpointed the beginnings of dysplasia in 2017, but to describe the entire grim, gory story would be a most egregious violation of Illness Etiquette.)

But explaining and complaining are two very different methods of communication, and I want not only to explain, but to explore the frustrations, the sense of imprisonment and the various angles of pain and unwanted change inherent among young people living with chronic illness. I’m done twisting myself in knots to accommodate the stigma. I’m going to write about the horrible things and the beautiful things that compose my reality. I want to write about how I hurt myself and my closest friends because of my anger and hopelessness. I want to write about how the story isn’t finished simply because I repeatedly survived.

Basically, I want to write about everything one should never, ever bring up on a first date.

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