“Baseball rendered [Billy Beane, infamous GM of the Oakland A’s] into something that was only fit for itself.” — Michael Lewis

Reader, let me ask you a question: How does society value people?” I don’t mean “How does a nation estimate the value of its populace?” I mean, “What twisted abacus is used to figure that Jeff Bezos is worthier than, say, the nurses and ER attendings who will keep you alive if you get a cough you can’t shake?”

This point was made by the economics journalist Michael Lewis, who’s been fascinated at how society consistently misjudges people and their potential, and how that becomes a self-fulfilling, self-reinforcing prophecy that upholds the unjust status quo. I revisited Lewis’s works because I’ve found myself reminded of that scene in Moneyball where Jonah Hill’s character says, “There is an epidemic failure within the game to understand what is really happening.”

I was thinking about that quote because I’ve been working on my book on cancer survival and pitching it to anyone who will listen (Hey, I have a killer first-line, folks). And I’ve been mentoring a glioblastoma caregiver on what to expect while undergoing experimental treatment. And my cancer friend, Mandy, had a recurrence. Mandy has one of the “good” kinds of cancer (pro-tip to ableds; the only “good cancer” is the one that kills Vlad Putin)(no one who’s experienced cancer would divide them into good or bad categories; there’s just levels of awfulness), and was in remission. I’d normally launch into how unfair that is, but the first thing you learn living in the shadows is, there really is no “fair” or “unfair” in the world, there are just cracks that some us fall through.

I was also chatting with someone about my book, and they said that their father died from the disease, and the concept of cancer survival and the problems imposed by that survival never occurred to him. That should really underscore the need for more-aggressive, improved outreach and education in the biomedical community, but, as an 18-year brain tumor survivor (for any agents or editors who met me recently, I should point out that I’ve survived three tumors; it wasn’t until 2017 that they became malignant), the overwhelming feeling I’m getting from the biomedical community is that there is a gaping chasm between those in white coats and the people who employ them (patients). In the US, we don’t have this weird, almost-deliberate misunderstanding when it comes to heart disease. In my EMT course, I was taught that, due to the way the heart functions, after that first heart attack, the second is a near-guarantee (briefly; cardiac tissue conducts electrical impulses to other, nearby cells to coordinate the beating of a heart; if just a few of those cells die from a brief lack of oxygen, the whole thing is less-reliable). Oncologists rarely tell patients that if they get cancer, they should plan on getting it a second time. And again. And that the best way to long-term cancer survival is to beat this one, and stay healthy enough to be a candidate for more treatment (that is 14 months’ worth of interactions with my oncologist, Head Warlock in Charge, and his staff boiled down to a sentence-worth of advice)(I just saved you a trip to Mordor, you can thank me later). Mandy’s ahead of the game in that aspect; she’s extremely active and healthy (like all of my other cancer friends, she does not look like she has cancer).

The quotation at the top that acted as the catalyst for this essay came from me explaining, as best as I could, my story to an editor, and realizing that a lifetime with tumors has left me only qualified to discuss them (this is not something that can be tested for on a standardized test, so most medical schools and fellowship programs aren’t interested in it), and virtually nothing else (career-wise; I’m more than capable of discussing why the speed of light is constant, what the protopathic pathway is, and why Catcher in the Rye and Great Gatsby are sins against God and mankind). I’m hardly alone in that one; we have a society that prizes health and wellness without understanding how either of those work. On Instagram, I can tell you immediately who’s going to make it, because they ask if my secret is luck, or what; a lot of it is luck (more than I’d admit, really), the rest is diet, exercise, and getting a lot of sleep. In the same vein as M. Lewis, I’d point out that, as a society, we’ve systematically overvalued the concept of “productivity” over concepts like “educational retention” or “rest.”

These are concepts that ableds don’t think about until productivity takes a hit (and, in a disquieting number of cancer survivors I’ve spoken to; a fair few have said that they never would have suspected they had cancer unless their performance at work or school had declined). And, once you’re in that hole, it is amazingly hard to climb out. I’m hardly alone in that one; I’ve talked with other survivors, assault survivors, sex workers, LGBTQ folks, and others with passing privilege about how hard we work to keep our grotesque, abnormal status secret whilst walking with the surface dwellers. We’re all well aware that there’s an artificial construct at work to keep us far away from Jeff Bezos, and Bezos ignorant of us.

Written by

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

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