My Migraine Secrets

Recently, I mentioned a little bit about my migraines. I thought I'd spill the whole story, which is a lot weirder than I'd let on.

* * *

I was thirteen or fourteen when I had my first attack, walking home from delivering newspapers one summer afternoon. I remember feeling happy. It was a gorgeous day, and the sun shone through the green, fresh leaves of a tree overhead. Everything seemed alive and real.

“Let me see the crystal,” I said, out loud, to no one, smiling as I spoke. I have no idea why I said those words. They just slipped out.

And then it hit me, from out of nowhere. Not so much a headache as a nausea behind my eyes. A distorted, jangling light -- very much like a crystal -- danced in the centre of my vision. It throbbed and spun, an insane, scintillating diamond that would not sit still. No matter where I looked, the distortion was there, stuck in the centre of everything.

It hurt, I felt sick, but not in my stomach -- in my head. Like my brain wanted to throw up. Stumbling home, I found my mother in the kitchen. I tried to describe what was happening to me, and saw this bizarre fear in my mother’s face.

“It’s nothing,” she said, her eyes wide with anxiety. “Lie down in your room for a while. You'll be fine.”

After an hour or so of lying in my room, my vision returned to normal. I felt tired, but okay. A little shaky. And very confused.

What had happened to me? What was this experience? And why had I spoken out loud, just before it happened? “Let me see the crystal,” and then I’m hit with this crystal-like distortion to my vision. What the hell did it mean? It didn't feel random. It felt like it meant something.

I didn’t talk about it, at dinner. Assuming we even sat down to a family dinner, that evening. We didn't always do that. If we did, it's not like we sat there in silence. My parents have been at war with each other for decades. Screaming and yelling and fighting for dominance was the only thing to talk about. There was little room for subtle matters like weird optic dysfunction.

All the same, as an adult, I can’t understand why or how I kept my mouth shut. The experience was so bizarre, so out of the ordinary. I think part of it came from the way my mother reacted. Her panicked statement -- “Everything is fine!” -- scared the hell out of me. It made me think this was something I wasn't supposed to talk about. I felt as if there was some sort of conspiracy going on.

The symptoms have started, I imagined my mother thinking. Soon he'll be dead. Best to keep him ignorant, the poor kid.

She really did react like she’d been expecting this moment her whole life, but wasn’t capable of dealing with it. And maybe that's true -- maybe she'd always worried one of her kids would get sick and die. So when I came walking into the house describing some bizarre symptoms, her reaction was fear and denial.

"Everything is fine!"

Which only made my situation all the more painful, confusing, and bizarre.

There were so many things going on in my life then that we just didn’t talk about. Puberty, porn, masturbating, stealing dad’s porn mags from his bedside table -- this new thing was just another item on the list. Just another secret.

My family has all sorts of odd secrets. My father was driving me home from school one day, when he accidentally said something about his ex-wife. Then he realized what he'd just said, and he looked all embarrassed and strange for a moment.

I felt a weird and crazy panic. I didn't know what to say. Ex-wife? What the hell was he talking about? This was the first I'd heard of any of this.

Later, my mother sat down my sister and I and told us. Our father had been married before, in Germany. He'd had a daughter -- our half sister -- who was still alive, and in Germany. His wife had kicked him out, because my dad was a drunk. He has since given up booze completely.

"We decided not to tell you any of this," my mom said, "because we thought it would be confusing."

The only thing more confusing than telling us, was not telling us.

To this day, I don't know my half-sister's name. I don't even know if she's still alive. My mother told us at one point that our half-sister was "very sick". Whether that was just a passing illness or something chronic, I have no idea.

I never asked my parents for more information about this sister of mine. The subject still feels taboo and creepy. Something we're not allowed to discuss. My parents buried it, and then let us know just a little bit about it. Digging it up again would be... uncomfortable.

My attacks felt similar to this -- terrain that we weren't allowed to discuss.

* * *

After the first attack, I had one about once a month. Taking my cue from my mother, I told no one about them. Fear, embarrassment, other complex feelings -- I bottled it all up.

Somehow, even when the attacks happened at school, I managed to hide that I was having them. I’d stumble down the halls, in pain, ignoring everyone and everything. It was grade nine, the beginning of high school. Maybe my teachers thought I was experimenting with drugs. Maybe they thought I was just stupid. Or maybe I was really good at hiding the pain.

I had no idea what the attacks were. I didn't tell anyone about them. But I did my best to make sense of them.

It felt like I'd asked for the experience. “Let me see the crystal.” It was an invitation. Something, or someone, had given me a choice.

"Have these attacks," this thing said, "and you'll become a different person. Don't have these attacks, and remain normal and dull. Now, choose."

Evidently I chose the crystal. But the offer must have been made on an unconscious level, because the bargain seemed to have nothing to do with me. At least, not consciously.

Science fiction writer Philip K. Dick didn't exactly help me out. In two of his novels, "Radio Free Albermuth" and "VALIS" he talks about alien satellites trying to communicate with human beings. These novels were fictionalized accounts of a real life experience Dick underwent -- he believed VALIS, a Vast Active Living Intelligence System, was trying to change him, heal him, or possibly heal the universe.

For a while, I wondered if that was what happened to me. Were my attacks some kind of alien communication?

Some entity somewhere else offered me information and I accepted it. Maybe each attack was the "satellite" getting in touch and giving me data. It was all being downloaded into my unconscious mind.

Dick's science fiction gave me a semi-useful model for contemplating my experiences. But in the end, I was an innocent, overweight adolescent suffering from a stressful home life. Philip K. Dick was a drug abusing, science fiction writing, insane adult. Our experiences didn't mesh.

Besides science fiction, another not-so-useful source of help was comic books.

I delivered newspapers to a barber shop, right next to a great store that sold magazines, cigarettes, and cigars. They also had comic books. Super heroes never did anything for me. “Swamp Thing” and “I, Vampire” were my favourites.

And there was “House of Mystery”. Each comic featured three “Twilight Zone” type stories about some spooky, supernatural happening. One particular story seemed directed at me, like a personal message from the universe.

There’s a hack artist who is ripping everyone off, copying their style. He is a bad man, in some indefinable way. He is approached by a mysterious figure. A man in a suit, with a suitcase.

“Do you want to be a better artist?” the stranger asks.

“Of course, it’s all I want.” But it isn’t true. He doesn't want artistic skill. What he wants is success and fame.

“Then take this crystal cube," the man says. "When you are ready to be an artist, smash it into pieces. It will give you the vision you require. But are you sure you’re brave enough to do it?”

And the stranger leaves.

For a long time the artist has the cube, and does nothing with it. He can’t convince himself that this situation is for real. It’s just a cube, after all. So what? Smashing it will do nothing.

But for some reason he gets desperate, frightened, needy. Maybe he needs the money, or maybe he has run out of stolen ideas. He smashes the cube.

And then we see the world from his perspective. Everything is art, and he can’t cope with it. He sees a man as having an apple for a head, the walls are bleeding, everything is surreal and distorted and strange. He has gone insane.

Is this story about me? I asked myself. Did I smash the crystal when I asked to see it?

I knew it was insane to think this way -- aliens are trying to communicate with me, or I've been offered magic powers -- but I was young, alone, confused, and dealing with an experience that made no sense. It felt like there was no one to turn to. So why not look to a dead, insane, science fiction author? His experiences, at least, seemed similar to my own. Why not look to comic books for answers?

Where else could I turn for help?

* * *

A year later, I found out what my attacks were. A kid at school complained to our teacher he was suffering from a migraine. They’d messed up the prescription on his glasses and it was causing specific symptoms. He described some of them -- and they sounded the same as mine.

I hate to admit how happy this made me. I grilled the kid for more details, much to his discomfort -- he was in the middle of an attack. But I desperately needed to know more. A visual distortion? A sort of head nausea? No matter where you look, the distortion is there? And it looks sort of like a crystal?

"Yes, yes, please stop talking about it," he pleaded.

“Migraine,” I remembering saying out loud, happy to finally know what was going on. Having a name for my experiences changed everything. I was no longer alone.

I tried to do research on migraines. Neurologist Oliver Sachs wrote a book on the subject, and several times I thought it might be a good idea to read it. But each time I picked it up and flipped through it, I felt like a migraine could come crashing down at any moment. To this day, I have yet to read it.

In many ways, I'm lucky. My migraines aren't severe. They usually pass after an hour or so. I have visual distortions, a sense of nausea, and not much else. Other people are crippled for days, actually throw up repeatedly, and so on.

In part, I think it was the secrecy that messed me up. Not talking about my migraines was a big part of my migraine mythology. It was my secret. My mother had inadvertently convinced me to pretend everything was fine. At the same time, I entertained this very powerful fantasy that this thing was killing me.

Any day now, I thought, I will drop dead and these things will be over.

Thinking about migraines, reading about them, or even talking about them meant I could have a migraine. So I did research only sporadically. And I hardly ever talked about my experiences.

The longer I went, not telling anyone about it, the weirder it felt. If I went to a doctor now, I thought, and said I'd been suffering these things in silence for years, what would they say?

"Why didn't you see a doctor sooner?" they would ask.

And what answer did I have? None. I felt like an idiot.

* * *

I was on my way to visit a friend when I was hit by a car. I was riding my bike on the sidewalk, on the wrong side of the street. The car clipped my rear wheel and I fell to the ground. I wasn’t hurt, but I immediately went into a migraine. Stress is a big trigger for me. The people driving the car were tourists, and drove me to the hospital, which was only a few blocks away.

Ironically, I had been on my way to the hospital. My friend was working there in one of the gift shops.

When I got to the hospital, I was secretly overjoyed. Finally, a doctor was going to look into my eyes and tell me what was wrong with my vision. Everything would be great. Finally, someone would know about my migraines.

I did see a doctor, and he did look in my eyes. I told him all about my symptoms -- leaving out the part about how I'd been having these for years and years. But nothing came of it. He said my eyes were fine. He told me it was probably just a stress reaction. I could stay at the hospital for as long as I wanted, but I was free to go at any time.

This was a huge disappointment. I'd expected the doctor to look into my eyes, see I was having a migraine, magically know I'd been having them for years, and offer useful and helpful advice. Instead, I got a familiar refrain:

"It's just stress."

* * *

Eventually, it became easier to talk about my migraines. This was partly due to my not having them as often as I used to. Living with my parents was an extremely stressful experience. After I moved out, my migraines were much less frequent.

I told a few friends about the whole "Let me see the crystal!" moment. One woman I knew, who was very religious, suggested I had opened myself up to the dark forces of Satan. The Dark Lord came to me and said, "I will give you magic powers!" and I let him in. Clearly I needed to pray, have an exorcism, etc.

I actually considered this possibility for about half an hour, before dismissing it. Which goes to show how desperate I was for answers.

Another friend had a much simpler explanation -- auras. People who suffer from migraines are sometimes compared to people who suffer from epilepsy. Often, before a seizure or migraine hits, there is an aura -- an experience of some kind that indicates a seizure is about to happen. It can be a smell or a taste or a sound. Smelling burnt toast is an example many are familiar with.

"In my case," my friend told me, "I find I lose my ability to talk. I was in a McDonald's once, about to have a migraine. The woman at the counter said, 'What would you like?' I wanted to say, 'I'll have a Big Mac.' But all I could say was 'Mac! Mac!' I felt like an idiot. And then the migraine hit."

While this explanation was more reasonable than alien satellites or talking to unconscious beings from another dimension, I hated his explanation. I still do. My aura was so very specific and strange. "Let me see the crystal!" and then I see this crystalline distortion in my vision. It was too much of a coincidence. Too perfect. It had to mean something.

But that's what human beings do, isn't it? Random events get strung into a story. We try to find meaning in everything -- including, and perhaps especially, those things that have no meaning.

Still, I cling to this idea that something asked me if I wanted to have migraines, and I said yes. Who would I be without these migraines, after all? They put a distance between me and the world, they gave me a new way of seeing. They changed me.

That can't be entirely random, can it?