Able Bodied

I blew through $450 in a single evening on Amazon the other night.

I wish I could say this was the result of Wodehouse-ian binge, or some really cool, rare books, or some wacky, overpriced E. Musk gadget that nakedly appeals to conspicuous consumption. But it wasn’t. It was just gym equipment. And none of it was even that interesting — a mid-range, adjustable bench press/barbell rack; a really high-end barbell (I mean, sure, I could get the 10 kilo cheapies made of zinc, but I could also floss with used Kleenex)(pro-tip; apparently mid-range barbells aren’t a thing, which shocked my mid-range-priced outdoor enthusiast sensibilities); and some very high-end resistance bands. I did this for the same reason I got a weight vest in February, bought overpriced dumbbell weights in June (that really set me back, trust me), and am currently looking into affordable stationary bikes; because gyms have gone the way of the Eisenhower conservative. Oh, sure a few Planet Fitness’s have opened, but those are to bodybuilders what a Puritan-themed Hooters would be to a minibrew geek — all the important parts are there, if you squint, but they’ve been warped and twisted beyond use or enjoyment.

I can’t avoid fitness now for the exact same reason I can’t get COVID; because I have a life-limiting, chronic illness. And in situations like mine, ableism is probably as lethal as the disease.

When I tell people I have brain cancer — even if it’s currently in remission — even if they are actual consulting oncologists who are new to my medical team and have my own medical records in their hands — I can see one thought immediately flicker across their face. It’s the exact same sentiment every single adolescent/young adult survivor hears sooner or later (sing with me, folks), “But you don’t look like you have cancer!

This is not the incredible compliment healthy people (or people who think of themselves as healthy) think it is. It’s like telling a member of a racial minority they “look exotic.” You’re just telegraphing that you have a lot of preconceived notions about how one group looks or behaves, and we’ve just punched a small hole in your wall of bigotry. In my own case, it’s usually, “I didn’t think you’d be so funny!” (Yeah, I know all ABI folks are supposed to be drooling lobotomy patients; trust me, there are moments I don’t wonder if I would’ve been happier about that, too).

You’re probably well-aware of the standard cancer story of someone’s beloved great aunt or distant cousin getting the disease, slowly withering away to a raisin as the disease eats them, and then they die. Let me tell you a story you only get to see when you’re on Planet Cancer, because you frequently can’t see prejudice until you’re on the receiving end. It’s of an otherwise healthy person getting a bizarre, horrible disease and losing access to treatment for a variety of reasons (and, hey, if your white blood cell counts crash, maybe it’s time to look into other options), not infrequently because that person’s doctors don’t think they can “take it,” a judgment frequently made by looking at a person and their most peripheral vital signs and indicators (guys, I can elevate my own blood pressure in ten minutes by thinking about the federal deficit; it’s not a great indicator of cardiac health). Then that person withers away and dies. Hell, even my own oncologist, Head Warlock in Charge, told me prior to treatment, “We’re putting you on the most-aggressive, most-effective treatment available, and we don’t recommend that for everyone.” Which, I suppose it’s just as well that a totally-not-at-all-necromancer isn’t not out there raising more revenants for his army, but it definitely has some nasty implications that not everyone gets the same chance at survival that I got. It’s also possible he was displaying that same almost-annoyed bedside manner he’s since become famous for (in total honesty, this is one of the few cases where someone’s competence and skillset in their chosen profession outweighs their severe interpersonal deficits).

Either way, I got into much better shape during treatment. Because my life possibly-literally depended upon it. Being young and “healthy” — apart from the cancer(as stupid as that phrase is, I’ve heard it used) — has allowed me to get away with the sort of dramatic, random spikes in various vital signs that might get Grandma the boot — at one point, one of my urine samples indicated renal failure, which, let check, still hasn’t happened. In one particular instance, the nurses chased me down and lectured me on potassium in my diet (which resulted in me swallowing two multivitamins on days when I knew I’d get a blood draw — remember, physicians, medicine is a game; we’re gaming you to get more medicine, you’re navigating the system; you’re either the doctor we know to go to in time of crisis, or the gatekeeper we have to sort-of, almost-lie to in order to save our lives). Obviously, those readings were fairly either errors or one-offs, but it’s not like I can feel my nephrons dying off in real time, so my major “Health-o-meter,” apart from seeing if anything hurts (apart from the existential angst), is just looking in the mirror.

Which, I suppose, is good in that it makes this particular prejudice easy to overcome, except I do have to “look healthy;” which, if they can do for Beloved Leader in 2017, makeup artists can do for anyone. But it also puts a weird Sword of Damocles over my head to constantly stay in shape. I also can’t get some sort of serious, potentially-coronary-causing disease like COVID (one of the drawbacks of radiation is that it’s really bad for your heart and circulatory system)(it’s also the most-effective treatment against brain cancer). So, you can appreciate the bind I’m in of having to stay in superb shape, while keeping my exposure to a(nother) poorly-understood, unpredictable disease to a minimum. While everyone else my age is establishing careers and families, I have to navigate that fine line as if my life depends upon it.

So, even though I’m not wild about it, I’ll fork over ~$450 for the same reason I don’t skimp on the Rick Simpson Oil budget — it beats the price of a funeral (this is especially horrific amongst glioblastoma patients, something like only 25% of whom qualify for further treatment in the event of a near-inevitable recurrence). But, how many other families have to pay that price because they didn’t look “healthy enough?” Who here didn’t have the financial support and friendly neighbors to loan them make-shift equipment, or don’t know as much about nutrition management, and wind up with 30 extra pounds (just FYI; I did during initial treatment thanks to dexamethasone, but dropped the weight just as quickly)? Even if they’re already a thyroid cancer patient, the burden of proof will suddenly be on them to drop some weight, or abstain from chemo. And then they whither away and die.

Written by

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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