My (sort of) Invisible Handicap

Pam Kress-Dunn
Jan 15, 2019 · 5 min read

Thirteen years of chronic migraine is probably enough

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Isabel Bloom should have called this “Child with Migraine”

It still surprises me that I no longer work, and my bank account gets an infusion of disability funds on the second Wednesday of each month. Some people think this happened because I broke my foot and it didn’t heal properly, especially when they see my handicap tag. There’s nothing like a woman on a knee roller to advertise disability.

But that’s not a handicap. I was already on a medical leave the month before my fracture, trying to figure out if another health issue — my so-called invisible disability — was so locked in that I would have to leave a plum job and retire early.

My limping left foot forestalls disapproving glances as I score the best spot in the grocery store parking lot. It makes my absence from birthday parties and my town’s annual film festival more understandable, but it’s not why I stay home. It’s chronic migraine that rules my days, and often my nights, with a pounding fist. And it’s not really invisible. Look closely, and you can see me blinking incessantly, or rubbing my forehead, or trying to unobtrusively curl up on a couch while everyone else is dancing or just, you know, talking. Just responding to their surroundings in a somewhat alert and functional state.

This headache landed thirteen years ago. Once I realized it was not going away, I tried to pinpoint its inception, searching sent emails to track it down. “My eyes are killing me,” I wrote on September 30, 2006. “I wonder if I have dry eye, like you?” An optometrist declared my eyes perfect (her word) and sent me to a neurologist, because it was probably a headache. I thought she was nuts, but when I got home, I took an Excedrin. When my eye pain disappeared, I was astonished. It was like taking a Tums for pinkeye and finding it worked.

So I set off on an enraging, dispiriting, and only sporadically rewarding search for, if not a cure, then some way to endure a head that shuts down with hideous frequency. Specialists call a migraine “chronic” if it appears fifteen or more days monthly. I’m overqualified, but there doesn’t seem to be a prize.

Over these dozen-plus years, I have been fired by one doctor — her entire neurology practice, in fact — because I sought second and third opinions elsewhere — and trekked 850 miles-round trip to a world-class headache center every other month; endured three hospitalizations averaging 11.33 days; and tried 647 or so drugs designed not for headache but for epilepsy, psychosis, and/or leprosy (just kidding), often in finely-tuned cocktail combinations. I’ve been tested for environmental allergies, abnormal spinal fluid pressure, and assorted brain maladies. I have undergone cervical, neck, and facial nerve blocks, all futile, although the eerie sensation of having no skull while lying on a pillow will stay with me forever.

My forehead has been ironed smooth with 31 shots of Botox in my head, neck, and shoulders, leaving one eye drooping and the pain unchanged. I have increased and decreased my caffeine intake, and have undergone the grueling, and ultimately pointless, withholding of gluten, sugar, citrus, dairy, nuts, onions, chocolate on the so-called Headache Elimination Diet. Acupuncture, TENS units, a trigeminal nerve stimulator my daughter dubbed the space tiara, cognitive therapy, chiropractic, bruxism guard, rose-colored glasses (really), mindfulness meditation, heat, cold, yoga, and massage have all been lots of fun, but fruitless.

My husband has been a saint. He has taken me to a nice optometrist in South Dakota testing lenses with prisms in a nationwide study — free glasses for a year! even the frames! — and to a major university’s neuro-ophthalmology clinic to find out, once and for all, that my eye pain is simply (not only, but solely) part of my “headache process.” He has given me NSAID shots in the middle of the night, installed blackout drapes in our erstwhile sunroom, held my hand when I didn’t slap it away, and reminded me to take a pill when I’m inclined to wait it out, even though waiting has never, ever been a good idea. He has left me alone when I shout that I don’t want company, and crept back in when he knows I do. He endures my nagging that he take an aspirin, some Advil, maybe both, when he mentions having a tiny bit of a headache himself. Even when I mutter that it must be nice to get relief so easily.

My insurance company has taught me that although triptans work — they are, so far, the only abortive pharmaceutical developed specifically for migraine — I should only take twelve tablets every 25 days. Perhaps they are right, as even a few too many analgesics of any kind will cause what experts call medication overuse headache and I, or we (over 39 million Americans have chronic migraine) call rebound, which is, let’s face it, a pain indistinguishable from drug addictions requiring rehab.

When we travel, I’ve learned to take an eye mask, sunglasses to wear in multiples, a dorky hat, a suction-cup sun visor for the side window, liters of water for constant hydration, syringes and vials of that IM painkiller, and far more triptans that I would ever take in a week as my pharmaceutical security blanket. I travel cross-country with my eyes closed, mostly grateful I can do it at all. I thank my lucky stars, when I can rustle up my gratitude generator, that I married a man who is content to just sit in a mountain cabin, or cottage by the lake, not doing much more than listening to music, taking brief walks, or finding quiet things to do while his wife moans pointlessly, buckwheat eye pillow over her eyes, in the bedroom.

I am grateful for audiobooks and podcasts and any service that reads good journalism and literature to me without too much vocal fry; I appreciate friends who confide in me about their own health impediments; I thank even the greediest Big Pharma for searching out a potion that will actually prevent this agony. When it ebbs, I try to remember the pain just enough to appreciate its absence, while not squandering my reprieve as I anticipate its return. I know this is not cancer, and it will not kill me, although I also know a sizeable number of migraineurs attempt suicide.

I try to enjoy the exquisite irony when my second foot surgery brings with it a pain even greater than any headache, smiling indulgently at the surgeon as he hands over a script for oxycontin, knowing I cannot take it because — oh, right — it would send me into rebound hell. I take pride in knowing this, and in getting paid to write about it on a migraine website. I’ve had poems about headache published in medical journals, and cited in a book called The Story of Pain: From Prayer to Painkillers. It’s the very definition of grim satisfaction.

Hope springs eternal, though, and I have not given up. In the meantime, I use that hang tag to park close to the store, however my foot is feeling. Even if you can’t see my headache, I take it with me everywhere I go.

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