Writing While Disabled
There’s a fun, popular sit-com trope in which the exact same event is retold — and filtered — through the lens of different characters. It’s a great way to explore a fundamental truth we all know — that there is a subjective aspect to reality, and, because that subjective perception shapes our thoughts and reactions, there’s actually a slightly subjective part of reality. And all the main characters laugh and go to the bar. Roll credits.
When writing about chronic illness, there’s a fundamental problem: We rarely get to tell our own stories. In the metaphor, that episode ends right after the main character finishes their story. We don’t get to hear the sassy boyfriend’s take, or the competitive best friend.
Or, put it another way; what book would Morrie, of Tuesdays with Morrie, write of his experiences with Mitch Albom? Sadly, Morrie departed this vale of tears before the book was published, and, although I have no reason to believe Tuesdays with Mitch would be significantly different, it’s an illustrative point. I have a friend who is writing about her dead husband’s war-time experiences, and she’s reluctant — to say the least — to say anything ill about him. I may disagree with it, but I get the ethics — the guy’s not around to present his case.
My question to you, the reader, is, why do we apply that rule to dead people, who aren’t around to defend their honor, but we’re fine treating dying people and near-death experiences coming from a single source as sacrosanct? Ableds trying to get in on this sweet, sweet chronic disease action actually have a term in my world: grief tourists, or trauma tourists.
Normally, this isn’t even an issue I’d consider worth my time, but this past year, I’ve seen a ton of articles about what it’s like to live in an ICU. Just like I did in 2002, 2014, and 2017. I’ve read stories about the horror of dealing with incessant paranoia about who’s wearing a mask. My blood cancer friends have to spend 100 continuous days in an isolation unit, and will be so immunocompromised for the rest of their lives that mask-wearing in public will be mandatory.
And all of these stories would be just another brief, passing fad in the larger world of chronic disease and health, but they’re going to shape perception, and, in turn, policy. And the inevitable narrative that will emerge — I feel absolutely safe in making this prediction, because it has been the narrative of disease, death, and dying for millennia — is that a dangerous, acute disease isn’t really so bad; after all, I survived it! You can do anything if you work hard enough for it!
Even leaving aside my snide, SJW view that one person can not possibly speak for every minority member they try to represent, there’s a very basic problem: If you fully recover from a disease without any long-term symptoms or side effects, you don’t have a chronic disease. You had an acute one that was dangerous and horrible, and I’m not going to try and diminish the dangers you face, but a disease you recover from has more in common with food poisoning than Grandma’s arthritis.
I normally argue that we have to treat health and disease in gradations and variations, because that allows the nuance and information required to discuss what are, usually, incredibly complex, multi-factorial issues, however, at the end of the day, health and disease are binary: Are you healthy, now? If so, and you were in a catastrophic health disaster yesterday, then the sick person isn’t the one reporting on disease. And that simple fact is going to frame your story like our hypothetical half-length sit-com special. For every tale like Donald Trump’s, where he got a mild version of the disease, got hopped to the front of the treatment line, and emerged to rage Tweet that the disease wasn’t really so bad; there are a half-million dead Americans who don’t get to say that their experience was different from The Donald’s.
Donny’s tale of getting sick in 2019 and getting the very best medical attention available differs a little from my friend, Tara, who had to spend a few days in the ER in 2018, and who now has a host of autoimmune issues to contend with for life. COVID wasn’t a one-off deal for her, it is now her life. Her story of COVID is going to differ dramatically from the policy-makers for whom disease, death, and the deprivations, degradation, and policy those two issues cause are purely academic. And, needless to say, in the annals of COVID, the stories of long-haulers like Tara are going to be overlooked in favor of the, “Hey, America totally thrashed that fatal disease… after it killed more of us than World War 2 did.” Because that latter take makes for a better marketing slogan than, “It’s going to be long, terrifying, and horrible, but we have faith in you” (which is the sentiment expressed at most support groups I’m in, despite the Soviet overtones of said sentiment). So, I’m inclined toward skepticism when healthy people suffer a significant health set-back and reword it as a Listicle “10 Things You Only Learn on Life Support” (1–10, “Being on life support is about as awful as you’d imagine”). I’m not going to argue for gatekeeping, but I am going to argue that if you had some sort of health scare, and then fully recovered, you are automatically disqualified from chiming in about illness, because you’re no longer sick.
Chronically ill people are highly stigmatized and isolated in a way that other minorities are not (I’m not saying we have it better or worse than BIPOC women, just that it’s a very different, probably-equally-depressing situation), because we represent something very icky and frightening: Basic mortality. I’ve met plenty of people who have convinced themselves that they are immortal (another reason why I’m not a fan of “I was cured” narratives is that the writer is no longer actively grappling with their impending demise in the same way a colon cancer survivor is), but most scientists agree that, no matter how healthy you are right now, you will, eventually, age, become infirm and frail, and then die. If you have decent insurance in an industrialized country, that death is usually preceded by a serious illness. So, of course no one wants to acknowledge that they’re still nursing some deep-seated PTSD or other trauma that’s affecting them, that would be admitting to not only the initial illness, but that it had long-term, far-reaching, unforeseen consequences. That’s a concept that ableds are hesitant to wrap their own minds around; they’re definitely not going to put that on Mimaw’s shoulders if they want her to “fight” cancer (again; you’re just sitting around being poisoned and irradiated, and praying you recover from the abuse before the disease does).
And keeping your sick, aging parents from other disease survivors does them a disservice. Other sick people need to hear from sick people who “made it,” not healthy people who were inconvenienced by disease, or caregivers, or any of the numerous voices that get raised whenever there’s a public health crisis, because, inevitably, when that crisis passes, those most-affected by it are rarely heard from.