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My 40-Year Malady

I try to feign alertness, but sometimes I just can't.

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Woman holding her head because she has a migraine
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I’m exhausted. It feels as though the blood has drained from my body, and my limbs are flaccid casings devoid of muscle or bone. It’s late afternoon; time to be a mother, to spend quality time with my son. But I know if I don’t rest, the pain will come, and I’ll be useless for the next two days. So, ignoring the guilt scratching at my brain, I allow the television to babysit for 30 minutes while I lie on the sofa and nap.

I’ve lost track of how many days I’ve spent this way. I do my best to feign alertness when my son gets out of school, so we can go to the playground, do his homework or color, but there are times when I can barely make it through the simplest tasks without needing to sleep. This all-consuming fatigue is a relatively new element of my 40-year relationship with migraine, a shape-shifting illness that has plagued me since childhood.

When I think back to the early years, it’s like flipping through grainy, cracked photographs offering glimpses of moments in time. There’s me in second grade, lying on the floor of the empty classroom as my teacher tries to sweep up. She wants me out of her way (“Perhaps you’d be more comfortable sitting with your head on a desk?” she suggests), but the coolness of the tiles provides respite from the agony in my head, so I refuse to budge until my mother arrives to get me. There’s me, slightly older, kneeling in my crisp, plaid Catholic school uniform as I projectile vomit into a toilet in the teachers’ bathroom.

There’s me crying at a sleepover because the dull ache is getting stronger and I know it will only get worse. There’s me huddled against a tree trunk during an outdoor field trip because the sun’s searing heat has ignited a cataclysmic eruption in my skull. There’s me in my senior prom dress, trying to throw up as quietly as possible in the ladies’ room because I don’t want the teachers to think I’ve been drinking.

There’s me leaving my college graduation celebration early because the pain behind my eye is so intense, I can’t see straight. There’s me coming home from the office and pretending to tie my shoe as migraine-associated vertigo causes the world around me to tilt sideways.

There’s me getting an MRI. An EEG. A CT scan. There’s me taking medications that dull but don’t stop the pain.

There’s me. There’s me. There’s me.

Although at times it feels as though no one understands what I’m going through, I’m not alone. According to the American Migraine Foundation, one billion people worldwide suffer from the infliction. It’s a neurological malady that impacts school-age children as well as adults; the Migraine Research Foundation reports that “half of all migraine sufferers have their first attack before the age of 12.” In my case, as with many, migraine is hereditary— my maternal grandmother, mother, aunt and cousins have all suffered from the disease, with most of us developing symptoms as children.

My mother says I was about 4 when I began to complain of headaches, and since then it has been an ongoing part of my life. I’ve missed school and birthday parties. I’ve left social events early. Each of my elementary school teachers kept a bottle of chewable children’s aspirin in her desk, just for me.

As a child, I didn’t understand triggers; I ran around in the heat, ate too much junk food and got too little sleep. I was a kid, with kid concerns. But then the pain would consume me. A pressure would build behind one eye, the side of my face would stiffen, and eventually severe bouts of nausea, vomiting and tears would join in. The onset of puberty exacerbated the illness, and soon I had chronic migraine, defined as headaches that occur more than 15 days a month.

I was 12 when my mother finally took me to a neurologist; as a longtime migraineur, she’d been hesitant to put me on prescription medications, as she knew each one came with its own slate of side effects. But the over-the-counter children’s pills weren’t working, so I saw a pediatric neurologist who prescribed a butalbital/aspirin/caffeine combination used primarily for tension headaches. The medication did little to ease the pain, but I continued to take it throughout my teens because there weren’t many other options available at the time for young people with migraine.

During adolescence, the pain seemed to come from nowhere, like a sucker punch to the side of the head. I’d take a pill and lie down (if I could) with a cold cloth over my eyes, waiting for the affliction to subside. If I was at school, I’d try to hold it together long enough so that I didn’t throw up in class or burst into tears in front of whatever cute boy I had a crush on.

Over the years, though, my relationship with the illness has evolved. Now, migraine doesn’t bash me aside the head but instead flirts with me for a while, offering subtle hints that she’s coming before fully attacking my brain. Waves of fatigue, typical during the prodromal phase, wash over me hours before the pain hits. I’m often so tired I wonder if I might pass out. I get ticklish pins and needles, like a row of ants crawling along my skin in a straight line. Language becomes harder to grasp, and I feel as if I’m on the cusp of a dizzy spell. Then a ravenous hunger kicks in, and soon I’m gorging myself on snacks before crawling onto whatever soft surface I can access for a short nap.

Today I have a better understanding of my personal triggers — lack of sleep, too much sugar, dehydration, hormonal changes, and heat. I don’t leave the house without snacks and a giant reusable water bottle shoved in my purse, and if I have an early morning event, I go to bed that much earlier the night before. I track my menstrual cycle and stock up on meds, knowing I’ll need them most in the 10 days before my period is due.

This self-awareness has enabled me to cut down my migraine headaches significantly, though I still get 10 in an average month. And these are the days when, as much as I’d love to run around the playground, help my son with his math or draw silly-faced monsters with colored pencils, I can’t. I must lie down, let my limp body rest, and silently beg migraine not to do too much damage.

I’ve lived with this condition for four decades. It has been the singular defining aspect of my life, and has negatively affected relationships, social events, travel and my career. Though I continue to pay attention to triggers and do all I can to mitigate its effects, I understand migraine is a part of who I am.

There’s me. There’s me. This is me.