I stare at the wall, feeling the tears burn at the backs of my eyes. It’s 2 a.m. I’m sad. I’m angry. I can’t sit still. My heart is racing and my legs are thumping restlessly against the chair beneath me. My anxiety is flaring like a solar storm, which means a migraine is coming.
“What’s going on? Migraine? What can I do?” my husband asks me, watching me tiredly from across the room then glancing knowingly at the window, guessing at what’s coming. He says again, for the hundredth time, that I should have been a meteorologist.
I ignore him and don’t laugh along with his joke. I feel a surge of irrational, misplaced anger instead. There’s nothing I can say to him, good or bad, that I haven’t said a thousand times before. The best thing I can say to him in this state is nothing. We’ve been here before, the prodrome phase of migraine, mentally worse than the pain itself for me. But eventually it will pass and we will try to live in the moments between attacks, however short they may be.
I remember seeing a movie once where the man and woman fall in love and spend almost three hours of screen time crossing a country at war, narrowly escaping death at every turn. In the last few scenes, the soundtrack suddenly dies. As a watcher, you know nothing good is coming. The prodrome phase is that sudden silence that warns nothing good is coming.
When I met my husband years ago, we had a slow blossoming friendship that somehow caught fire and became this fiery whirlwind love affair. It broke all the rules and suddenly there he was Christmas morning on one knee with a diamond ring asking me to do something I swore I’d never do again.
Cue the soundtrack. We were off in pursuit of the perfect wedding dress, then location and flowers and invitations. There were things to design and speeches to write and photographers and bakers to hire. I had a notebook and a plan. My migraines peeked in on our progress but their wedding present was a brief reprieve during those few months of hopeful bliss.
Then we were married! We were building a life and buying a house together. We were having estate sales and paring down. I had to-do lists and an aching back, if I pushed too hard, I had a migraine, but I had a plan for my illness and a plan for my life.
In our real-life movie, the music montage would slow down here and the camera would close in on that morning in July when I arrived at the hospital for a simple little surgery. I had not been super healthy, but it was nothing we and our carefully laid super plans could not handle. Until we couldn’t.
I almost died. I’ll spare you the details but it was grave and messy and expensive and debilitating. My new husband was almost a widow with three houses, two stepchildren and a very well thought out honey-do list just two months after our wedding. The honeymoon was officially over in every way possible.
I came home eventually, but things have never been the same. I was no longer the girl with a plan. I was a girl who couldn’t even pee or shower without help or lift more than five pounds. Perhaps even worse, it seemed to be a catalyst for my chronic migraines as well. I went from a few a month to headaches that would last for months on end. None of the preventatives or abortives worked. New procedures and old recycled treatments alike failed to give us back our new hope, so close only months before.
In the next few years, I had multiple surgeries to repair my wounds and to try to ease my chronic pain. Some worked temporarily, some failed completely, some were bandaids at best. I, personally, picture these years as a series of epic battle scenes. I certainly have the battle scars to prove I fought like hell to get back to where we began.
In the end, I gave up working full-time. Then I gave up my position at work. Then I had to give up working at all. I gave up our dreams of travel and adventure. In one of the most poignant scenes of my personal biopic, I sat at my kitchen table alone, having retired at age 40 and just learned that my youngest child was moving out on her own. I felt defeated, abandoned, useless.
In the movie I saw years ago, when the heroes had fought their way across a war-torn land to finally find their chance together at happily ever after, that was the moment when the music faded and an eerie silence filled the theater. The heroine takes a step, it echoes hollowly in the void. As a watcher, you know nothing good is coming. She steps on a landmine and the screen goes dark. There was no happy ending for them.
My soundtrack has been raging on for years through romantic adventures and charming house makeovers, fantasy weddings and sunny afternoon picnics. It has swelled through epic battle scenes and played touching melodies as the poignant moments of our lives have played out like a motion picture.
Last year, my soundtrack stopped. I stepped away from my job and my life. As a watcher, I would have said, “Oh dear, nothing good is coming.” As a person with a chronic illness, I know this is just the prodrome of my “new normal.” I will grieve the dreams I lost, mourn the plans I made, and try to live in the moments between the pain, not letting the soundtrack of my disease dictate my happiness.
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