I was recently tutoring a high school freshman on “The Odyssey.” In one passage, Odysseus was sent into the underworld but is repeatedly told, by his dead relatives, friends, and idols, that he had no business among the dead and needed to return to the living. I resented Odysseus and his outsized ego when I was a freshman, but now, at the age of 27, I get it. When you’ve lived with a chronic illness for nearly 2/3 of your very young life, you start to map yourself on a continuum between “the living” and “the dead.” Odysseus: You’re still insufferable, but I feel you.
It turns out, when you are wondering how to introduce your new blog series on being young, chronically ill, and fun anyway, one needs to look no farther than Freshman English. I may not have Odysseus’s powerful biceps, but I do have thoughts on dragging your specters of decay to Walgreens. It all evens out.
I was diagnosed with Crohn’s disease, an auto-immune attack on the entire digestive system, when I was ten. Over the next decades, I burned through every medical and alternative option, plus a few trial ones. I had been living in Brooklyn for several years when the environment started chipping away at me. Slowly at first, I dropped weight, slept more, and gritted my teeth through pain. My decay picked up speed. Soon I was working the bare minimum and spending every spare moment in doctor’s appointments and hospitals. Finally, too weak to climb the three flights of stairs to my apartment, The Fates went for the jugular.
I booked a flight and moved back home temporarily, then indefinitely. With almost no notice, I had to trade my independence and self-sufficiency for a weird regression to childhood. I slept and brooded as things kept getting worse. At my lowest point, my body weight dipped to an otherworldly 70 pounds, and my ability to care dropped with it. These were several months of anxiety and droning static.
Eventually, the inhabitants of the underworld heaved me back on land. It’s been a slow build, but, a year after moving home, I’m now much sturdier. I may now be able to convincingly pass among The Living, but I’ve seen too much of Death. Instead, I’ve gained membership in the Caught-Betweens, those of us who are neither actively dying, nor racking up life achievements.
It’s tempting to tie a nice bow around the experience and point out that, on the whole, Caught Betweens tend to be a superbly kind, thoughtful, and empathetic group. All of this is true: the people I have met through mutual struggle have been absolute gems. The tidy “thanks for the memories, Chronic Illness!” tone is disingenuous, though. Being Caught Between is also a hard, often isolating place. It requires a mixture of gumption, code-switching nuance, and sometimes outright lying to exist among The Well.
This prolonged struggle has grounded and shaped me, but it’s hard not to feel pangs of envy for my friends who got to stay on their trajectories. It takes so much work to rebuild the independence I once took for granted. As chagrined as I am to say it, my old pal Odysseus might have another stupid lesson for us: while he was trying to get back the life he used to have, he missed the point. The struggle is what made him strong.
So here’s to the struggle. In this blog, I promise nothing but bloodshed, lotus eaters, and indignities aplenty. Welcome to Chronic Illness: you’ll come out cooler than when you started. Get excited. It’s going to suck.
(Thanks to Jon-Michael Frank for use of his artwork.)