So, my father broke his neck recently. I realize that’s a little personal, but my primary writing these days is about personal health and how that relates to one’s tiny little world (and the world at large), and Dad mentioned something in our conversations that just hit me.
For everyone who knows me personally, Dad should be okay, however, he will need surgery (neurosurgery, to be precise) to stabilize his spine. As he put it, “it’s a good thing someone in the family has some personal experience with this.” And, at the moment, he’s in the hospital until he can get that surgery because — and this is one of the great things about American, for-profit healthcare and hospitals — once you leave the hospital with a spinal injury, any subsequent surgery is considered “elective.” That word is fatal to any sort of insurance coverage, and it’s worth noting that having my first brain tumor removed was considered an “elective” surgery, because I wasn’t having seizures at the time (this is true). Which means, as a 17-year-old boy, with a confirmed brain tumor, I was put in the same insurance/coverage pool as people requesting boob jobs. Most orthopedic surgeries are considered elective, but go ahead and try getting through life without a functioning hip, and you appreciate that they aren’t so elective, after all. At the moment, it looks like Dad’s going to be okay, but he’s looking at a nightmarishly invasive surgery, followed by months and months of rehab and physical therapy.
And then Dad said something that stuck; “You go through life, and suddenly, this weird, medical emergency comes up, and it totally redefines your life.” That’s how cancer works, sadly. You never think it’ll happen to you, and suddenly, a little blip on a scan completely rewrites your life. I hit it at 17, and the surgery was so neurologically damaging, I’m still (according to a neurocognitive battery assessment) suffering side-effects. Which have been heaped upon by two further surgeries, radiation, and chemo. And I now have the ultimate pre-existing condition; a terminal diagnosis. So, if you want the ultimate experience in how life looks post-brain-cancer, imagine that you can not go to your local doctor, anymore, because they are now massively unqualified to look at you, let alone treat you (according to the British Medical Journal, “medical error” is the third-leading cause of death in the US ( BMJ 2016;353:i2139); when you have an extraordinarily dangerous disease, you don’t have any room for error, so you’re forced to see highly-specialized physicians that are a rarity). And, according a family member, corporate America won’t hire me upon disclosure of that condition. Which is great as long as I maintain passing privilege, but for everyone out there with more-visible scars (suddenly, my decision not to get a port-a-cath seems great), well, according to my cousin, you’re now unemployable. Legally. Which makes no sense; according to the fantastic documentary “The C Word,” half of Americans will be diagnosed with cancer at some point in their life. That’s not a minority group, that’s a coin toss. And somehow, it’s legal to discriminate against us (again, I should be angrier about that, but there’s too many of us to discriminate against; it’s the equivalent of apartheid in South Africa; the minute corporate America realizes how many of us there are (especially as the Boomers move into their prime cancer-having years)).
So, at age 17, I got a dozen IQ points taken off the top, a permanent label that allowed me to legally be discriminated against; and, suddenly, it’s very little wonder my life doesn’t look anything like I wanted it to. I’ve literally spent half my life recovering from or overcoming allegedly-fatal diseases, and that takes all of your time, energy, money, and focus. I’ll admit that I’ve gotten tremendously lucky at many stages, but it really did take every single remaining IQ point I had to make it through The Year of Chemo. Yeah, it sucks that I have a big gap on my resume and my life expectancy has taken a massive blow, but, at the same time, it’s sort of an achievement just being here and able to stand upright. I know it seems like I’m asking for a participation trophy, but from POV, it’s like getting a Finisher’s Medal in the New York Marathon. And, for everyone I know going through a major medical ordeal (or, like, Dad, about to), that’s the unfortunate secret; you’re going to have to take the hit, and completely clear your schedule until further notice and dedicate yourself to it. And, as with the rest of life; that may not be enough, there’s a lot of luck involved in every step, and you’ll spend a lot of time praying that things don’t get worse.
I realize that’s a rather severe, grim viewpoint, but the cancer community — especially the AYA cancer community — is largely fed-up with the rah-rah, fairweather friend encouragement we get at the start, because we’re mostly-aware that this is difficult, horrible, dangerous, and we don’t get to back out at any point. Survivors get hit with the “B” word a lot (“brave”), which none of us like, because it implies we have a choice here, and, we also know, it codes for, “I’m so glad it’s not me,” which, enjoy that sentiment while you can, because, as an immunology prof once pointed out, cancer is an unfortunate cellular inevitability. In other words, we’re not brave, we’re not freaks — we’re just ahead of the curve, and you’ll get yours soon enough. To everyone just starting off; it’s going to suck more than you can begin to imagine — for the rest of your life (I was recently asked by another survivor, “I’m never going to feel ‘normal’ again, am I?” which, heart-breakingly, no, you won’t, you’re never going to be normal again, and you’re never going to be okay again, but you might be alive and functioning) — but it’s surprisingly doable. with enough support (both financial and emotional).