The Purgatory of Illness (and Jokes)

This picture will make more sense
by the end of the essay.

We weren’t sure what was wrong, but this week doctors believed either my body was rejecting all of my medication or I’d had a nervous breakdown. Even if you know nothing about my condition, we can all agree that if you can’t tell which of those two things is wrong, you’re in deep.

If you know nothing of my condition, it’s possibly because I scarcely write about it. It’s never appeared in my fiction, rather drawing me to sympathy and study of the illnesses and disabilities of others. But ever since I was thirteen and the recipient of some radical medical malpractice, I have had a crap immune system and have been in constant pain in every part of my body. Most recently, it began taking my hearing and my ability to focus thought.

If you didn’t know that every time we’ve ever talked I’ve secretly been in pain, it’s because I’ve been conditioning myself since puberty to manage the load. Two months ago, when I could no longer speak in coherent sentences, and when walking to the mailbox became too much of an ordeal for me to imagine (literally: I could no longer think straight enough to envision the trip), pain management was all I had left. Empathy seemed to evaporate from my mind. Beneath compassion, humor and creativity, all I had was the ability to not lose my grip on my body.

Today, I’m proud of that. I’m proud of having held onto that much when my entire nervous system turned against me.

At the time, I had no idea what was going on and felt guilty for bothering so many people about it. This is why The Bathroom Monologues have been particularly quiet for the last two months. I’ve completed no piece of fiction in the entire period; editing a novel became excruciating in ways I wish upon none of you. That little review of X-Men: Days of Future Past went up a week late because it took me an entire week to type that many coherent sentences.

If you’ve made it through those five paragraphs, then please bear with me for this: I don’t want you to apologize for my pain. Some of the worst parts of the last two months have been people frowning and trying to commiserate with me. All it does it perpetuate mood and fatalism.

Instead, join me in regarding the few instances of hope people gave me by being ridiculous. The first time it felt like anything could improve was walking through a Wal-Mart (of all places on earth). Out of the freezer section came a cart, pushed by a teenaged girl in huge, furry boots. Sitting inside the wire cart (not on the baby seat, but lounging inside the food carriage) was another teenaged girl in huge, furry boots, with as demure a grin as grins can allow within their city limits. They were half-grown adults enjoying something ridiculous, chatting about what to put on their Eggos.

I’m pretty that the next time I smiled was in learning someone had the gall to name their band “The Style Council.” Or it was a reclusive friend linking me to the strangest Vines he’d found that month.

Of everyone, my mother was the most worried for me. It’s something moms excel at, isn’t it? Some days she’d invite me out, I think just to give me a change of scenery. Funny to think asking someone to drop off the recycling is altruistic, yet in my easily overwhelmed state, I showed up to the car half an hour late. I was sure she’d be furious, and was prepared to apologize into her frustrations.

Instead she had found a rope swing and was happily spinning around a tree in the yard. She didn’t even hear me come out. She reminded me what a damned good role model is.

This is what I need, and in bulk. Don’t wish me well, and don’t put on grave tones, and don’t say the hardest part is over or is yet to come. I’ll take your prayers (and thank you, Father Andre and David Twiddy – that really did mean something to me), but I’ll also be glad to see you decorating this world with quirks. It reminds me of my purpose.