“Aren’t you tired of that, ‘You’re a warrior! You’re a rockstar!’ #$@! I don’t do this for accolades or attention,” my new friend, Jill, gripes to me. I do. Jill is, like so many people I’ve met in the past few years, a chronic disease patient. Unlike the majority of those folks, she’s not an inhabitant of Planet Cancer. She has a rare form of macular degeneration that also gives her disability status, but, like me, she has enough vision to get “passing privilege” under most normal, casual circumstances (until you ask me to sprint or do an about-face on the spot; then I fold like a cheap lawn chair). Like me, she’s open about her medical problems and willing to discuss them with strangers. These are two very thin threads of commonality, but, in a country obsessed with health, that sensation of being locked outside of life — and a willingness to talk about it — is a surprisingly effective instant bond. I refer to this twilight existence between health and obvious, debilitating impairment as “Disease Country.”
A friend recently sent me an article about people with “invisible illnesses” — chronic medical conditions or disabilities that aren’t readily detected — and how researchers have a hard time figuring out how many of us there are. I wrote back that, in 21st century America, saying, “I have a serious illness that sometimes — not always, not even predictably — holds me back” is tantamount to stepping forward as a Jewish person (or gypsy, LGBT, or any other minority) when Herr Eichmann asks about one’s linneage. I’m not going to claim that chronically ill people are being systemically rounded up and killed or anything like that, because that implies far too much effort. All that’s required to kill us is cancel disability benefits (which The Donald seems hell-bent on doing), allow hospitals to refuse to treat us (which is a distinct possibility for brain cancer patients), or just remove one critical life-support system. We die. No concentration camps or pogroms are needed, because our hold on life is so tenuous that merely withdrawing support is usually enough to seal our fate.
Also like me, even though Jill is open to discussing her illness and long-term effects thereof, she doesn’t open every conversation with, “I’m going blind!” (I don’t know if she’s on Instagram — I did put photos of myself getting infusions on there); we both rely, to some extent, on people’s assumptions about illness to navigate interpersonal interactions (and she can still — to a limited extent — see). I don’t mean that chronically ill people are con men or anything of the sort (most of us have a difficult time getting enough energy for a life, let alone a life of crime); just that every single interaction instantly — and permanently — is altered once people learn you’re sick. As I’ve written before, once people learn that, in the long-term, you’re inconsequential, it brings all sorts of beautiful and ugly truths to the surface, but no one who’s seen them really wants to see them, again, if it’s avoidable. Disease claims so much for people like us, it shouldn’t be the start, middle, and end of every one of our conversations, too.
Like most of my friends on Planet Cancer, Jill is eminently kind and empathetic. That’s another truth that seem to occur in Disease Country; most of us who show up to cheer each other on through this marathon of life seem kinder and more empathetic than average. I honestly don’t know if that’s just the self-selecting nature of disease support networks, or what we wished we’d seen more of, or what we know you’re going to need, when you inevitably arrive (again, that’s not some sort of threat or gloomy prediction, it’s a basic statistical fact that you will, eventually, encounter some disastrous tragedy or another)(on the day of your death, if not sooner), but it does seem to be another unifying factor. Or it’s possible that everyone clings so tightly to their humanity because it is one of the last things illness can take from us. Or all of the above.
Another commonality: no one really goes into detail regarding diagnosis, prognosis, treatment, insurance costs, etc. No one in my cancer supports groups do, and Jill and I don’t (or only the most cursory manner, anyway). This isn’t an act of delusion or denial; it’s akin to able-bodied people not discussing how much they enjoy breathing or sleeping. It’s such a basic fact of our existence that we don’t even bother bringing it up, unless prompted, or unless there’s some weird new plot twist. I honestly don’t know what her future holds, even though I could readily Google it. In total honesty, the ability to look up one’s own future on Wikipedia is not only overrated, it’s frequently inaccurate (as someone who is now longer at No Evidence of Disease for much longer than I was initially given to live, I can personally attest to that). I mean, like everyone else, she was almost curious about medical marijuana (unlike everyone else, she’s actually read my article on that subject, so she actually knows as much as I do, so that really wasn’t a topic), but it wasn’t a major topic. There are so many more of us living in the abyss than you surface dwellers can readily imagine. I know, because I didn’t imagine it when I was healthy.
Jill and I are open about our illness not only because it’s an inevitable and unavoidable topic, eventually; but because we know that sooner or later, you, dear reader, will be where we are. And we’d like you to have enough light to make out your surroundings when you arrive.
“I was reminded, yet again that a terminal diagnosis is not a sentence, but the beginning of a process that may take years to unfold, containing love, hope, generosity and kindness, alongside the inevitable sorrow and loss.” — Rachel Clarke