Data Out of Context
Right now, society seems poised on the brink of revelation about the innate problems of having (predominantly) white police officers investigate themselves in police fatalities; white people chairing panels about what issues the black community faces in America; panels of men discussing womens’ issues; and billionaires leading anti-poverty initiatives. Of course, I could naively optimistic in all of that; we might veer away from an epiphany at the last minute and maintain a system wherein the fox is responsible for henhouse security. But that’s not what I’m writing about today; I’m writing because I had an unfortunate revelation about ableism and how it’s going to shorten your life.
On one of my online brain cancer support groups, a neuropsychologist joined and posted a questionnaire looking at the mental health and well-being of brain cancer patients. I hit the link and started dutifully filling it out; and got to about 60 questions, when other, more-pressing demands for my time came up. I won’t complete it, because it’s more useful to anyone with a measurable IQ to write about the issues I noticed, which, I suspect, are inherent in medicine, and the approach that empirical science takes. Don’t get me wrong; I love that approach, it’s wonderful in a number of ways, but it paints a harmfully misleading story about complex, chronic, multifactorial diseases that will then be used to inform the next generation of physicians. The first question was, “What was the date of your tumor diagnosis?” Which seems fairly innocuous and inquisitive, but, for any survivors out there, is immediately error-filled. Quick question for the audience; how many of you have survived a malignant tumor? Okay, further question for that crowd; how many of you have survived just one tumor? I can tell you right now, as far as brain tumors; I’ve literally only heard of three people who had just one brain tumor. Even my friend Rod, the metastatic prostate cancer who’s had more neurosurgeries than me, has had multiple brain tumors. Even focusing on my malignant tumor, the research questionnaire was riddled with errors that made it inapplicable to me. “What treatments did you receive for your primary brain tumor?” might seem like a crackerjack question for ascertaining the psychological effects of chemo and radiation. One quick problem: My last primary brain tumor was six years ago, and I only received a surgical treatment. Yeah, the malignant one is a recurrence/metastasis of that one (making it a secondary brain tumor), so you do kind of need to ask more questions to parse out the reality of my situation; and that’s before you include folks like Rod who have had more brain tumors than me, but that’s a minor consideration when he’s worrying about his cancer metastasizing to his bones.
Another question asked, “How many times this week have you had difficulty moving about?” I understand that the researcher was interested in depression and/or sexier aspects of medicine like lasting effects of organic disease. I have a limp that ranges from “almost unnoticeable” to “painful to move about,” but, again, that’s not a symptom of the disease, that’s a side-effect of surgery (I literally could not feel the left side of my body for two weeks after my latest surgery) and chemo (neuropathy is a common side effect). It’s kind of hard to communicate that reality in a question that asks how often that’s happened in the last week (in my case, a far more accurate question would be, “How many days this week has your disability interfered with your daily routine?”). Nope. It’s just more numbers without any context or stories involved.
If my cancer buddy Jenna drives on an infusion day and, God forbid, crashes and dies; she’ll be added to the statistics surrounding her cancer. She might even get an autopsy or a case study. Because she’s in a clinical trial, it might reflect poorly on the experimental drug, and that might show up, somewhere. There wouldn’t be anyone there to point out that infusions are just as horrible as able-bodied people think they are, and driving after one is like driving drunk; the study drug is almost an inconsequential factor in that hypothetical. But no able-bodied doctor or researcher would immediately know to double-check the dates, and then have the knowledge to know that being pumped full of poison and then getting behind the wheel is a bad idea. I mean, it’s possible that someone would, but the more I experience on Planet Cancer, the more I realize just how few people who haven’t visited really understand the experience, and all of their attempts to do so are entirely framed by their (or their thesis adviser’s) experience. Which, at this point, is mostly-harmless, but in 10 years will be a societal malignancy.
My major point in this essay is; if you are a physician, researcher, pharmacist, or professor looking at the challenges survivors face (and mental issues are not an inconsequential one; but asking a question like, “How has your sense of self-reliance changed” without having an option for, “It’s decreased” is akin to including on a questionnaire about systemic sexism, “How much more do you trust men after years of prejudice?”), the first impulse — what you’re trained to do — is to review available literature to make sure you’re not repeating or replicating data that’s already out there. Don’t do that. As I’m fond of pointing out; Hippocrates (yes, that Hippocrates) knew about cancer. The traditional method of inquiry and treatment has had over 2000 years to repeatedly demonstrate its shortcomings, and if most of us are already spooked by people in lab coats. Instead, I’d implore you just to spend twenty minutes talking with us as equal partners in the process. Most of us will happily answer any questions you might have, and, even better; you might start asking the right questions. As any survivor can point out; Google and the WHO will provide you with loads of data — far more than is actually helpful, in point of fact. The NIH and biopharma industry right now are like the Pentagon poring over Vietnam statistics in 1963. They do not need any more generalized data; I guarantee you; they need someone who can explain what all of that data actually means. And you do need to venture out of the laboratory and discard the sanitized, near-meaningless statistics to do that.
