This is Migraine Island!

Oh no! Did you get marooned here, too?

A few years ago I was stranded on Migraine Island: a severe and inhospitable place full of wicked, fickle fairies and swamps of sorrow.

Unwanted Adventure

Not only did my rescue fail to timely arrive, but with every passing month the place seemed to grow more fell. The freshwater springs that sustained me at first dried up. The fruits I had scavenged turned to rot. The sharp-fanged beasts grew restive, and the day was often darkened by eclipse. By 2013 my disease had gone "chronic" (i.e. I was having debilitating migraine symptoms on most days in any given month), and it seemed I would never find my way home.

But as I write this in April 2015, I am several months into what seems to be my escape from that terrible place. I am island-hopping with a passable raft, assembled by me under the baking sun. I am sailing along the archipelago of recovery, and the winds have changed in my favor. Each stop offers a slightly better clime. I can see the mainland from here, rising tall and verdant and brimming with bounty and cheer. My course seems clear.

Sharing Hope

And where are you? If you have never experienced severe migraine or a chronic pain or neurological condition, you might think my island tale too much hyperbole. May you always have the luxury of that peace of mind. I don't really expect you to relate to what follows here. You might prefer to read some fiction instead. If you do happen to relate in spite of your good health, I commend you for your empathy. Hold on to that. It's very valuable.

But if you are marooned on your own hellish Migraine Island, these pages are for you. I suspect we have much in common, you and I, with our remarkable, sensitive, devilish brains, full of mystery, tenderness, and insight.

I offer my story for you to do with as you see fit. I promise I will respect you and the dignity of your unique experience. I hope that something here will be useful to you, and your deliverance will soon come by yacht, and whisk you away to a fairer place.

A Reluctant Kinship

I remember when my disease first started to look like something that could actually compete with my innate stubbornness for control over my life. I looked around on the Internet for the punchline to what I assumed was some terrible joke. I wanted to find reassurance that there was a Clear Path, an omen of certain escape. Perhaps if I steeled myself to the pain, it would prove only to be a trick of the light. All the awful would go away. Or, as my family likes to say: Where there's a will, there's a way.

Instead, what I found on the web was hardly reassuring. I found two kinds of severe migraine narratives in abundance then: 1) the rejoicing person who after a lengthy parade of extreme treatments had at last found long-sought relief, and 2) the agonized, mired deep in misery, wailing in pain into the deafness of a noisy online world.

Both narratives demoralized me. I didn't even like taking aspirin, and here I was supposed to try a succession of experimental, off-label drugs whose function in my body nobody understood? Or zap myself with some alien device?

And the suffering — it was too hard to read. I felt myself slipping through a portal into some feudal backwater where virtuous peasants are lashed to their knees by merciless lords. I mean, who needs horror movies, or news of global conflict, when you can read migraine blogs, right? The spectrum of agony is astonishing.

Wild Tales

In fact, my fellow migraineurs' stories left me feeling deeply conflicted. On the one hand, it was good to hear that others had got off their islands, by however unseemly a route. But the stories of indefinite marooning chilled me to the bone. Would I, too, be expected to endure such a hell with no end in sight? And how was I to discern who would stay stuck and who would escape, when the paths of exodus seemed so random and peculiar?

Ultimately, I distanced myself from all of it. Surely neither spurious cures, nor a kinship of pain could be my fate. I am a practical, determined woman, with both feet on the ground. I would make the problem go away, by hook or by crook. Where there's a will...

Sailing on a Different Sea

Fast forward too many years, and here I am, at last sailing forward through a different sea. Behind me, it seems, are my own struggles with many of the same Kafka-esque treatments that I had scorned, and my days of darkest misery.

What I still can't quite wrap my head around is this new life, both livable, and radically changed by my experience of disease. It is an unfamiliar place. I'm full of gawking and awe.

What if I had both read and trusted the lessons I eventually learned the hard way? How might my journey be different? I don't know. But as I row, at last, toward the mainland, I am pausing to write down for you everything I have learned on this journey. I am writing for you, if you are somewhere like where I have been, that desolate, desperate place, albeit in your own one-of-a-kind way. You who are still building your raft. We are fellow travelers, you and I. And I offer to tell you my tale, for comfort, camaraderie, and hope.

Mapping Incarceration and Escape

Here, I pay tribute to my own Migraine Island adventure, and, too, I try at last to draw its map. I will show you where quicksand pulled at me and rockslides fell. I record its contours and the weed I finally found to weave into a raft. My fervent hope is something here will aid your own departure. I make no promises, but to tell my truth. May it serve you as you honor your own, and lend you courage on the way.

  1. The Rules on Migraine Island
    What we can expect while we're stuck here.

  2. Life in the Shadows
    Ever wonder how living under siege *really* feels for someone else?

  3. Tending the Body, Tending the Mind
    Migraine can be transformative. It's even possible for that transformation to be positive.

  4. A Partner's Perspective
    ...or, Wait, She's Married Through All of This??

  5. Hope for the Future
    How do we move forward from here?