Ask A Survivor: The Problem with Questions
I was recently asked to discuss my survival with an online advocacy/survivor support group, Buddhi. And I experienced something I never, ever thought I would, the obvious question that’s somehow the wrong question. First of all, I should point out that I have absolutely no complaints about everyone involved, and it was lovely to talk to someone else who knows how much infusions suck, but it brought back a distant sensation. You’ll encounter it, too, when you get to Planet Cancer. You’ll get that dreadful phrase that inevitably heralds Bad News, “We noticed something odd on the last scan, I’d like to follow up with another next week with a different contrast.” Then you get that phone call from the physician after six pm (that’s never good) that you need to come to the OR, tomorrow, “Don’t stop at the waiting room.” Then you spend a few weeks crying or puking (you can’t judge me… yet), and you’ll get a treatment plan. You might even start treatment. Most of us, somewhere along the line, intuit that this thing is far too big to figure out on our own, so, you find an appropriate support group, and, everyone’s lovely, and, you just have to know, so you ask; we all do, con gusto:
Q: Will I lose my hair?
A: At this point, you’ll notice both a lot of warmth and kindness, but, underneath, an odd sensation that there’s a gulf between you and everyone else in that room. I’m writing this because I quite unexpectedly found myself on the other side of that chasm, and the reason why there is that funky sensation between newly-diagnosed and denizens of the depths, because we can say, “Absolutely,” and might even have some recommendations on wigs or hats, but the truth is, we don’t really know, because we didn’t think about that at the time, and there are a ton of possibilities and solutions to that problem. But, I sincerely doubt anyone wants to sit through the 45 minute presentation/explanation of, “I knew I couldn’t do a standard baseball cap, because an orienteering expedition through the parts of my brain that used to know Calculus also gave me excruciating headaches that made putting anything as hard as plastic next to the recovering wound way too painful, and I hate men’s wigs, because it looks like you’re deeply insecure, and everything else screamed ‘I have a dreadful, taboo disease!’ so I went with a crushed wool felt Stetson because it was soft, comfortable, and didn’t make me look like a dying person. And I wound up wearing it most of my waking hours, because radiation made me go bald in a really bizarre, Medieval monk haircut way, which is even less-sexy in reality. The hat looked good, though, I still wear it.” That’s the full, complete explanation that gives that necessary context, but if you’re in treatment, chances are you’re on a clock, so everyone goes back to discussing how dreadful that new GI surgeon is.
The metaphor for long-term survivors I keep coming back to is the Giant Squid (I know this is some colonizer bullshit, but it’s a helpful analogy), because they’re large, impervious-looking creatures that seem incredibly strong and powerful and ready to be released, but, the reality is, Architeuthis dux is actually fairly delicate — they don’t do well at shallower ocean depths, they’re adapted for a fairly specific pH range, they can be killed by sudden influxes of warmer water. The truth is, the Giant Squid is perfectly and exquisitely adapted to a very specific, rare environment that is just so alien and hostile to our species that we have trouble imagining that they don’t do very well outside of it.
Very similarly, long-term survivors are so completely shaped by our highly idiosyncratic conditions and unique diseases that we kind of flounder when forced out of the comfort of our own inhospitable turf.
Similarly, even though a NASA flight director or biosphere specialist has been studying planetary colonization formally for most of their lives, if you asked them what it would take to colonize Mars, they’d probably stammer for a bit, because that might seem like a single, simple question, but it’s actually hundreds — possibly thousands — of much-smaller questions bundled into one (hey, the Calculus class is coming back!)(trust me, if you’d paid attention during your math requirements, you’d laugh at the Zeno’s Paradox reference), starting with, “Why would we want to colonize Mars? Who would want to?” because that has massive implications on budget, long-term goals, etc. But if you ask about fuel oxygen ratios in the fuel we’d use to get to Mars, they’d probably have some solid advice, because that’s specific enough to warrant a single, solid answer. Similarly, when a newly-diagnosed person asks about hair-loss, we usually have more questions, like, “How do you feel about your hair and self-image as defining you? Are you flexible here?” and, “Are your friends going to lose their minds if they see you looking like the Bene Gesserit if the wig slips, or do you need something for stability? How do you feel about scarves?” That widening gulf you feel is us quietly looking at the intersections of,
Q: What can we safely assume about you (always a bad move on Planet Cancer)?
Q: What do you need to know vs what do you think you need to know vs what you already know? and,
Q: How do we give you a five-minute explanation that doesn’t terrify everyone?
As you might imagine, the intersection of those three questions is tiny. The gulf is large. Anyway, the question that sidelined me was, “What was your brain damage like?” Which is probably the second-most asked question, after the hair thing. I kind of flailed, because it’s like asking someone how to breathe or shower, I’ve now lived longer with brain damage than I had without it, so I tend not to think of it that much.
Q: How has neurological damage affected your life?
A: Unfortunately, it’s defined it. We don’t like to talk about this, as a society, but how far you go and how quickly are largely determined by standardized test scores. Want to get into MIT? Better ace the SATs. Wanna get into law school? Study for the LSAT. Wanna be a CEO? Best to get a good grade on the GMAT so you can get into a good business school. We don’t like to talk about how the sum total of one’s human potential is measured by single set of skills related to test taking, but it’s the awful truth. Sever someone’s ability to take tests — especially if they (okay, me) aren’t warned beforehand, and they’ll flail for a while before figuring out what’s wrong. Or they won’t achieve much after barely getting that Master’s.
Brain damage is, to paraphrase a biofeedback specialist who treated me, subtle, and probably affects almost half the population (high fevers, a single night of severe sleep deprivation, and many other fairly-common incidents can cause brain damage), although most of us are unaware of it. Certainly, until you get me in a situation involving rapid switchtasking or stamina (which is what most standardized tests actually test for), you probably wouldn’t notice it in me. Similarly, for almost six months after my second neurosurgery, I skipped the number “4” whenever counting or mentally timing something. Not “3.” Not “5.” Not “14.”
Conversely, you can absolutely reveal my neurological degradation simply by asking me to sprint or kicking me in the left knee (I’ll fold like a cheap lawn chair). Stuff that’s obvious and noticeable like that is actually beneficial, because we notice them, which increases our ability to plan and compensate (I have a friend who’s recovering from aggressive chemo for breast cancer, and noticed that when she’s cooking, she needs to put EVERY ingredient in front of the recipe, or she’ll forget it).
The ultimate issue for most long-term survivors giving advice, especially to newly-diagnosed folks or survivors who aren’t members of the tribe, is that it essentially asks us to come at our current medical problems as the person we were prior to the disease, and that person died at the words “Stage Four.” We’ll give you as much advice as we can, but we’re not usually fully aware of all of our own problems, so advising others on them is right out. So, when you see that look in a survivor’s face that suggests we’re flailing about with advice, the best move is to discuss your own story, to help us help you figure out the ending.