When I was thirteen years old, I went blind. It happened suddenly, with zero warning, and as bad luck would have it, it was just at the end of a gym class when it was time to get changed. At first, I thought I’d gotten something in my eye, but when I rubbed it, the odd shining patch on the side of my vision didn’t go away.
Instead, it grew. Within a few moments, I couldn’t see anything but a flickering field of light all across my vision. I’d been moving slower than the other kids (as a queer kid, there’s nothing quite so hated as a changing room in high school). I sat down on the bench, unsure what to do. My classmates were mostly gone, and the next group of students were coming in—boys five years older than me, and rowdier and louder.
Terrified by what was happening, I turned to the noise beside me that I assumed was another boy and said, “I can’t see.”
But what came out was, “Blyecanshee.” My tongue didn’t work. My lips tingled.
My hand went numb. I dropped my shoe, which I hadn’t managed to put back on yet, and then pain like I’d never felt before set in under my right temple.
I say “set in,” for lack of better words. In my life, I have suffered broken bones (I swear I’m not clumsy). I’ve had my hand torn open by sheet-metal at a factory where I worked (yes, I was wearing safety gloves, and that’s why I still have a hand). I’ve passed a single kidney stone (not recommended), and the pain of that moment was worse than any of those. It was immediate, unrelenting, and did not let go. I could not think, I couldn’t speak, all I could do was curl up on the bench and weep.
I assumed I was dying.
I later learned I spent about five minutes like that, until one of the boys who came in to change—a friend of my sister’s, Jason Thompson, who’s name I will remember for the rest of my life—realized I wasn’t just upset; I was in real trouble. He got a teacher. They helped me walk to the nurse’s office. Walk was a pretty relative term, as it was probably more like carry. I have nearly no memory of these events, though I do remember how stepping out the door into the hallway full of fluorescent lighting made me cry out loud—and vomit.
Yeah, I didn’t increase my popularity or win any friends that day.
Once the teachers were involved, things moved quickly. Someone spoke to my sister, and my sister reported that both she and my mother had migraine headaches. It was decided this was what was happening to me, and my sister took me home. In the car, she thanked me for getting her out of English class. I threw up again. She stopped thanking me.
That very first migraine headache was one of my worst, but it set a pattern that would repeat almost weekly for most of my teen years. It took me a full day to recover from the first one, which lasted half a day, and there were times in my young teen years especially where I would have two or three migraine headaches a week. That blindness was called scintillating scotoma, which makes it sound like something you’d enjoy at a party, but no. It was relentless. It was excruciating. I lost time. When I was in my late teens, I learned that sometimes when I was having a migraine headache, I would seize.
And to this day, it always starts the same way: suddenly, I can’t see.
Pain management clinics that know their stuff generally bring out the ten-scale reference for pain. My migraine headaches have range to them, like most people, with my worst hitting a nine, and more ‘tolerable’ ones can be a six or seven.
To translate that, a “nine” is generally considered pain you can’t escape. It’s the only thing you can think about, and talking and moving are barely possible because of the pain. When these migraine headaches hit, my only goal is to get to somewhere I can sit in the dark. (I have to prop myself up, as my right side often goes numb and becomes useless, and lying down feels about a thousand times worse, so I arrange pillows and lean into the corner of a dark room and settle in for however many hours of pain is about to come at me). On the other end of things, a “six” (I’m aware of the pain the whole time, and I give up a lot of activities because of it, but am still capable of talking and moving, even though I can’t see) will sometimes see me propped up in the corner of a dark room listening to an audiobook, as I’m capable of focusing on the words.
The list of what can cause migraine headaches in some people (and not others) is a mile long, and if you ask any two sufferers what sets them off, I’m willing to bet they’ll have commonalities as well as differences. Tension and stress? Check. Strong smells? No, not me, though I don’t like them and they’ll sometimes give me a headache. Coffee? Big check. Cheese? Only some. Red Wine? Every time, or at least I assume so, since I haven’t touched the stuff in decades. Chocolate? Sometimes. Not enough sleep? Check. Too much sleep? Also check. Have I been on the computer or a screen too long? Check. Bright, flashing lights? Check. Is there a thunderstorm coming? Check. Am I overheating? Check. Am I sick in some other way? Check.
And so on. Basically, my body’s reaction to anything going sideways is a migraine headache.
The older I got, the more I learned about why my migraine headaches happen, and what I can do about them. It turned out—after many doctors and neurologists—that I discovered I was hypoglycaemic (doing the fast to learn this gave me multiple migraine headaches, of course), and so changing my eating habits was a huge help. I eat little meals more often, and I balance out quite a bit.
I have pain-management medication now, rather than daily preventatives (the side-effects of which weren’t worth the trade-off in lessening, but not stopping, the migraine headaches). I cannot tell you the number and kind of medications I was prescribed and used over the years, before I landed on Imitrex as the most effective with the least trade-offs for me, personally.
Where does this leave me? These days, If I’m careful, if I do everything as well as I’ve learned to do, I’ll likely not suffer more than a migraine headache every few weeks or so. Sometimes I make it to monthly. I’ve never gone longer than two months. The worst of those, the “nines?” Maybe every third migraine headache.
When Cait [our SpAN editor] asked me if I’d talk about being a spoonie, I hesitated. I have—like so many—swallowed the “Oh, no, I’m able-bodied enough” rhetoric. I mean, I’m not affected on a daily basis. It comes and goes. And unless it’s happening, I’m more-or-less on par with the average joe. I can “pass.” (The irony of this as a queer man is not lost on me.)
Except, as Cait pointed out, I’m wrong. I am affected on a daily basis. I’m always aware of the next meal or snack. I’m not allowed to drive a car or have a driver’s license (even if I hadn’t seized, they frown on people who randomly go completely blind being in control of a vehicle, and y’know, that’s fair). I can’t drink more than a single drink if I don’t want to risk fallout. I’m a writer, but I can’t handle more than a couple of hours at the keyboard a day.
As an author? That affects me on a daily basis in a huge way. This post will be a day’s output. If I push it and do more, try to work on another project, without stepping away from the computer for a few hours and resting my eyes somewhere screen-free? I’m risking inducing a migraine headache.
I aim to write one novel a year. I could not do more. Period. Writing my first book was like walking through a minefield of migraines, as I was cramming in as much writing as I could around my full-time job. On my day off, I’d sit for four or five hours at the computer, my temple would start to pound, and I’d go lie down for the rest of the day.
That’s not healthy, it’s self-destructive. And I don’t do that any more.
Like Cait said, I adapt my life on a daily basis.
To some degree, I can understand how people get the wrong impression about migraine headaches. For one, people use the word as a synonym for a bad headache or a tension headache. They’re not the same, but people tend to use the terms interchangeably. And in fairness, migraine headaches do vary so much. Only about one in four people with migraine headaches have auras (my blindness and numbness are auras), and there’s also ocular migraines, which share the aura symptoms with a migraine headache, but not the pain.
Heck, even the Mayo clinic definition is full of may and often and can: “A migraine can cause severe throbbing pain or a pulsing sensation, usually on just one side of the head. It’s often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can cause significant pain for hours to days and can be so severe that the pain is disabling. Warning symptoms known as aura may occur before or with the headache. These can include flashes of light, blind spots, or tingling on one side of the face or in your arm or leg.”
So how do people get migraine headaches so wrong? We don’t talk about them, we don’t educate about them, and those of us who suffer from them generally do exactly that: we suffer, then get up and move on, because we know no one who doesn’t have migraine headaches is going to get it. And because—like me, when Cait approached me about this blog—we’re just so used to this, we don’t think to challenge it. We don’t think we count because, after all:
It’s just a headache. It passes. You lie down, you take a pill. It’s done.
Think of commercials for migraine headache relief. I mean, I get it. I don’t think anyone wants to see a commercial where someone’s having my kind of reaction to a migraine headache. Vomiting, shaking, falling over, and sweating profusely isn’t a good look on anyone, and I bet it wouldn’t move more Tylenol. But watching a pretty woman put one manicured hand to her temple and squint a little before the voice-over talks about the pain of a migraine headache is tiresome. She’ll have a glass of water and a pill and sigh in relief. There. Migraine headache solved, disruption to life ended.
Dude. If only.
’Nathan Burgoine is a tall queer guy who mostly writes short queer fiction, though he’s up to three novels now. Light was a Lambda Literary finalist. Triad Blood and Triad Soul are available from Bold Strokes Books. He lives in Ottawa, Canada, with his husband Dan and their rescued husky, Coach. You can find ’Nathan online on his website, Twitter, and Facebook. Coach often steps into the frame, and ’Nathan wouldn’t have it any other way.
Nathan––when I say I feel your pain, I feel your pain. My neurologists and I agreed an 11 is when you’ve almost completely dissociated from reality but vaguely know someone is screaming but only later find out it was you. To the best of my knowledge, I’ve never experienced a seizure, though I’ve had negative scotoma. My migraines began around the age of 5 or 6 and it’s lovely to be told just ignore it, dear, if the aspirin won’t work. It will eventually go away. Yes, though it may not be until the next week.
Even though I too managed to function “normally” enough for most of my life despite the migraines, we deserve to be here. We also get to speak for some others with conditions similar to ours: epileptics, stroke victims, and people with other sorts of brain injuries.
Keep on writing and contact me whenever you want to talk to someone who completely understands!
Danke! It’s funny, you’d think that with a mother and sister who also had migraines that those “you’ll be fine”/dismissive comments wouldn’t happen, but their migraines were very much different than mine, and when we finally discussed the pain-scale, I was shocked to find they’d never hit “the high numbers,” until I wasn’t shocked upon thinking about it. 😉
Hugs, and thank you for the welcome!