Author’s Note: I started writing this post before “Everything Everywhere All At Once” came out, but fret not, I can bring it around to Jamie Lee Curtis playing the piano with her toes. Wait for it...
“You can either have constipation and dry mouth, or tingling fingers and hair loss,” my doctor says. “Oh, and brain fog. Tingling fingers, hair loss, and brain fog. Or constipation. And dry mouth.”
No, I wasn’t on one of those E-Trade commercials that have been living rent-free in my mind since the early 2000s. I was at my neurologist’s office, praying at the altar of Big Pharma.
I have recently being diagnosed with “chronic migraines.” This means that I have a headache more often than I don’t, at least fifteen days a month, although to me it sounds kind of Victorian. Like I should be carrying a parasol when I leave my garret.
It also means that I’m now eligible for preventive migraine medication, which is what they call it when insurance deigns to cover a few ancient treatments for seizures, high blood pressure, and depression that, through mechanisms no one understands, also prevent migraines. Maybe. If you don’t mind the Sinead O’Connor look.
But having a headache more than half the time is exactly as awful as it sounds. So I happily signed up to go bald. (Listen, I already locked down a husband. I don’t need hair anymore.)
You make different “would you rather” choices when you’re chronically ill. You make different choices, across the board. Frankly, the whole experience has thrown me into something of an identity crisis.
Based on the books that I’ve been reading since I aged out of Katniss and Tris, I should be proceeding toward my “Can she have it all?” mid-thirties crisis of balancing career and a rich life of drinking wine with my girlfriends. (This is what comes after the toxic love affair with the aging narcissist and the successful escape from the dead-end hourly job in retail. The soundtrack is Wilson-Philips. See also: “Bridesmaids.”)
Instead, I have to carry a parasol when I leave my garret. Or, whatever, wear a baseball cap when I leave my second-floor walkup, because one of my many migraine triggers is sunshine. Others include eating too much, eating too little, the existence of weather, excessive smiling, and, of course, booze.
I can’t believe I wasted so many of my prime drinking years chasing shots of Crystal Palace vodka with Diet Coke. I can finally order a $16 glass of wine without hyperventilating and instead I’m stuck going full GOOP. I mean, I have been purchasing herbs from the Internet. I read a 600-page book about mindfulness.
It’s not the midlife crisis I was counting on. And yes, I was counting on a midlife crisis. I spent what was in retrospect too much of my early twenties reading John Updike and Philip Roth. I was expecting to make a bold and novelistic escape from my harpy wife and troglodyte children. I wasn’t expecting to experiment with how much magnesium I can consume in a 24-hour period without triggering forgot-to-wash-the-spinach-food-poisoning levels of diarrhea.
I wasn’t expecting, moreover, to have to choose between being an ill woman who plasters her walls with optimistic cross-stitch art or being an ill woman who harangues everyone who will listen about how the patriarchal capitalistic healthcare system insists that her illness is all in her head and also her health insurance won’t cover her bespoke experimental alternative complementary integrative medical treatment.
The problem is it is all in my head. Literally and figuratively. Migraine is one of those pesky illnesses that crop up when you’ve been under a great deal of stress for a long time. For example, if you spend nine months trapped in your flat in an apocalyptic City of London while Boris Johnson lugs suitcases full of wine into Number Ten, and your “commute” is moving from one side of the kitchen table to the other, and also, you work for a bunch of lunatics who also graduated from the PayPal school of being extremely hardcore. (As an aside, do not Google the phrase “extremely hardcore.” Yikes!)
None of those things have been true since I left London and my job on the same day in April 2021. They imprinted on me nonetheless. I can’t remember what it was like to live in a body that didn’t surge with fear when I logged in every morning to see what fresh hell had landed in my inbox overnight. I can’t remember what it was like to be someone who had never spent nine months wondering if they’d ever see their friends again.
I keep repeating the very unfunny joke that instead of “long Covid,” I have “long pandemic.” And the primary symptom is that every few days or so, the shadow of pain begins to loom.
I recently read Meghan O’Rourke’s “The Invisible Kingdom,” about her experience of chronic illness. I don’t share her righteous anger at a medical system that isn’t built to serve people whose illnesses don’t respond neatly to a course of antibiotics. I think that anger is misplaced or even futile. (I also can’t believe she wrote an entire chapter about fecal matter transplants without making a single poop joke, but that’s a personal issue, and probably a sign of why I’m not a real author.)
I went to the DMV a while back for the first time in several years and wondered if the entire borough of Brooklyn hadn’t also turned out that day. Judging by the range of flannel, yarmulkes, skintight bodysuits, and Outdoor Voices totes on display, the answer was yes. All of us, curious crowds of men and women attired in the usual costumes, suffering through the inescapable indignity of renewing your driver’s license.
I think being ill is a lot like being stuck at the DMV, down to the incomprehensible system by which there are thirteen different numerical queues and somehow your deli counter ticket is in the slowest one. Only that’s because you have a headache and everyone else has, I don’t know, a heart attack or is carrying their index finger on ice in a Ziploc bag. In which case, please! Go ahead! I can wait!
The gist of the book is that the author turned out to have a host of rare autoimmune conditions that took years to unmask and required a complex cocktail of traditional and alternative therapies to bring under control. I took issue with the book’s framing: instead of celebrating that our knowledge of medicine is advanced enough that her doctors eventually figured out what on earth was wrong with her and gave her everything from antibiotics to a poop transplant to fix it, the book is framed as a condemnation of a medical system that can’t quite do this on demand, at scale.
To be fair, she makes important points about how the well-known flaws of our healthcare system make life particularly hellish for the chronically ill. (I will put on my Bernie Sanders mittens and demand universal healthcare as ferociously as the next millennial.) But it seems kind of bonkers to think that everyone with a constellation of bizarre symptoms should be able to walk into a hospital and a team of specialists leaps to attention in concert and starts shooting them full of spirulina or whatever. I mean, people are having heart attacks and broken legs here, and there are only so many doctors to go around. I’m just glad I probably won’t ever have to get an arm amputated on the battlefield with only whiskey as anesthetic.
I don’t know. Sure, you could say that I’ve wasted the past three years of my life farting around with acupuncture when I could have been pumping myself full of every migraine preventative on the market, if only BlueCross BlueShield would shell out for it. It would be nice if my doctor had three hours to listen to me recite the history of every time I got kicked in the head during my undergraduate dance career instead of having to help the ten zillion other people who have mysterious headaches and need fifteen minutes of a neurologist’s time. It would be nice if it weren’t the case that each of us is a soul residing within a fragile vessel that doesn’t actually work as well as promised. Life is unfair!
The book also reinforced the sort of butt-hurt-ness with which the chronically ill are expected to dismiss every good-natured suggestion for how to solve their problems. I’m sorry, what?! I have a headache twenty days a month. Please, by all means, tell me about the essential oils and esoteric energy healing practices that worked for your aunt’s coworker’s cousin. I would like to spend my paycheck on them! Let’s all go to reiki!
At the same time, you’re supposed to be put out that people don’t care enough about your delicate constitution. So, like, if someone tells you you should try drinking more water, spit on them, but if they don’t, also spit on them.
I am also supposed to reject the instinct to find meaning in my illness or practice positive thinking. To do either would make me basic. I might as well go buy a pumpkin spice candle.
I read all of this as symptoms of a millennial delusion that a more pleasant and peaceful life for each of us would be in reach if only everyone would just wear their mask on the subway and agree conceptually that oil pipelines are bad juju. Boo, late-stage capitalism, and all that.
It’s totally reasonable that Meghan O’Rourke is righteously angry and not amused at all about the years she lost to illness. I can forgive the woman for not making a poop joke.
What I can’t get past is the implication that this is all somehow someone else’s fault and not the course of fortune’s cruel wheel, or an opportunity to try on a new version of your old life. If Joni Mitchell can sing tenor at the Newport Folk Festival, I can get used to not getting smashed at parties anymore (as if I hadn’t given that up a decade ago anyway, RIP college). All of us are never going to be who we used to be. Some of us start that change earlier than others.
The problem is nobody makes TV shows about all the muscles you pull in your thirties. We all thought it was just going to be workplace hijinks until we died of a heart attack. Psych! Yes, workplace hijinks, but also your knees are made of jelly, and butter gives you heartburn. Have fun for the next seventy years!
Everybody I know has been dealt some kind of cross to bear many decades earlier than we were led to believe we would. The burdens my loved ones carry are unequal. I would insult them by listing them out in one sentence, but it seems that all of us will eventually have to change the ways we live our lives for one reason or another, in more or less dramatic fashion.
But we get used to it. When life gives you hot dog fingers, you learn to play the piano with your feet, right?
Told you I was going to bring it around. Now I have to go figure out how to write a novel in which the classic red sports car of midlife crisis fame is replaced by one of those Star Trek-looking headache devices the people on r/migraine swear by.