Ask A Survivor Ableism and “Brain Fog”
Q: I’m worried about telling potential employers about my medical history, and I think I’ve been snubbed by other employers after they discovered my medical condition. Are these concerns justified?
A: Fuck yes. My rule on prejudice is, if you smell smoke, there’s probably a lynch mob burning a cross nearby. Seriously, though; the way that prejudice works in America is on subtlety; if everyone went Aktion T4 on you the minute you walked in the door (more on that reference in a minute), they’d be facing formal charges, and everyone would know better. Instead, all it takes in a competitive job or educational market (ask about how medical schools’ policy of “Rolling Admissions” invites Christopher Duntsch types) is someone just quietly shuffling your application to the bottom of the pile. That position will be filled long before there’s any need for active bigotry.
When it comes to what I call “active bigotry” — that’s when one group decamps and actually goes on a field trip to do someone harm, there’s historically been both very little, and a horrifying history. Before anyone ask, the traditional treatment for chronic illness by society was banishment from society to die in the wilderness (See; Leper colonies). Which isn’t a totally passive, natural outcome, but banishment is comparatively sedentary compared to other actions taken against minorities. If you want to make an argument for active ableism, one could argue that ableism is the bedrock prejudice. I don’t mean that it’s particularly more vicious than any other prejudice, I mean that if you show me a racist, I’ll show you someone who’s tired of those stupid disabled parking spots. Show me a homophobe, I’ll show you with someone who closes the door right before someone with a cane (HEYO) gets to it. Show me a transphobe, and I’ll show you someone who quietly believes in sterilizing Down’s Syndrome patients. The list goes on, but ableism cuts a little deeper than most other prejudices.
It cuts so deep, disabled and incurable patients were the very first on the Nazi Shit List. Check out “Aktion T4” here, if you’re ready for some nightmares (https://en.wikipedia.org/wiki/Aktion_T4#cite_note-FOOTNOTEKershaw2000256-39). I know it’s not cool to cite Wikipedia, but research changes, and PubMed doesn’t traditionally work for historical research. The point being; in the game of “Oppression Olympics,” cripples aren’t even competitive, because we were eliminated in the semifinals.
So, yeah, if you suspect someone’s putting you off because you were recently demoted from full majority privileges, that’s upsettingly likely, and your diagnosis is no one else’s business.
Because I was asked about this while wrtiting this piece, “Why would anyone discriminate against people with a diagnosis,” that’s a question only someone with no experience of prejudice could ask. Off the top of my head, I could come up with, “Employer doesn’t want employees taking sick leave,” “Employer doesn’t want to change their health insurance plan or pay more due to one employee torpedoing the budget in a single course of chemoradiation.” Those were just off the top of my head, but, the unfortunate truth is; people do view you differently after you tell them about your diagnosis. And the minute prejudice becomes logical, there will be no prejudice. That’s just not how it works.
Q: Does “Brain fog” go away?
A: It depends. I know that’s not the answer anyone wants, but that’s like the question, “Will this runny nose go away?” If it’s allergies, yeah, but not for a few months. If it’s a headcold, it should be gone in a week or two. If it’s mono, learn to live with it. “Chemo brain” also covers a vast swath of descriptors.
The type of chemo brain I experienced was more like “drunken/hungover forgetfulness,” because, when you’re only getting a few hours of sleep, being pumped full of experimental substances, and generally living on a diet of adrenaline and existential crisis, you won’t be at peak neurological condition. Throw in some chemicals designed to actually target neuronal support cells, and it’s the rough physiological equivalent of stepping off a red-eye from Cabo after Spring Break. You won’t be able to pass a sobriety test (and you should not consider yourself sober in cancer treatment, that’ll lead to fatal mistakes like driving after an infusion); writing a disseration on Early Medieval English Kingdoms is right out. If that’s your scenario, then, obviously, your cognitive functions will improve the minute you’re taken off treatment and start sleeping better.
I believe I read somewhere that a single night of sleep deprivation can cause clinically-detectable brain damage, so, whenever we use that term, the image that comes to mind shouldn’t be me in bandages in a recovery ward, it should be young parents, but we’re not ready to have that discussion; the point is that a truly upsetting percentage of the population has some kind of noticeable neurological dysfunction. The trick is, so many of what we think of as cognitive process (especially executive functions) are actually “bundled” together that it’s difficult to tease out and define a specific problem. If you get a book off of a shelf, that’s not you simply reaching up and grabbing “Hop on Pop,” you can feel where your arm and hand are in relation to your body, you can see where they are in relation to the book you want, you can recognize the book in question, and you’re coordinating all of your muscles to grab it without losing your balance and toppling over. Your brain just streamlines the whole process so that, if you suddenly develop balance problems, all you’ll be aware of is that you topple over. When discussing more-cerebral functions, such as lying about a book you didn’t read in book club, there are even more tiny little neurological functions coordinating and working together in ways we have trouble detecting. If chemo destroys any of those delicate little neurological circuits, you might permanently believe Great Gatsby is a great book. In that case, it’s sometimes possible to cobble together a back-up set of neurons using a medical treatment called “neurofeedback therapy” (be careful, there are a lot of quacks in the field, and it is a nascent science, so there’s a lot of potential for abuse). As I can attest, this might take you back to 85–90% of what you once were, but some stuff isn’t coming back.
Every organic brain disease survivor — including myself — has that heart-breaking, “I will never be what I once was” moment,” but we’re in a different category than most cancer survivors, in that our own brains are trying to kill us. I haven’t met many cases of permanent chemo brain, although the most-common recovery estimates I’ve heard from my breasties and leukemia friends is 2–5 years for full recovery. Just be kind and gentle on yourself whenever you aren’t in high-impact cardio. Seriously; that’s what one qualified specialist recommended — sleep, lots of exercise, and a high protein diet (which is just healthy, anyway).