Going through the motions of life is my survival strategy. I don't think about the week or even the day but tackle each moment. Baby steps. Most nights I go to sleep completely drained and awake wondering if I'll be able to get out of bed. The ghosts of whys and wherefores hover above me: Why have I been dealt this card? Why aren't I strong enough to overcome it? There's guilt over missed days of work, canceled social plans, sacrificed goals. Maybe I'm being imprisoned for something I did in a past life. After all, pain derives from the Latin word for punishment, poena. I yearn for 7000 b.c., when a hole was drilled in the back of the skull to release the evil spirits.
Chronic pain demands a proactive mind-set. You need to help yourself at a time when all you want is for someone to save you. In attempting to prevent a more severe attack, I take a handful of medicine three times a day. I try to separate the idea of pain from that of suffering: I can't control the presence of pain, but I can control how I react to it. I move my thoughts away from what hurts and focus on breathing, relaxation tapes, and the feel of wet sand between my toes. I practice biofeedback to mentally relax my muscles. And when neither these methods nor painkillers mitigate the pounding—when defeat tries to crawl under my skin, hissing, 'Nothing will help, you're running out of options.'—I tell myself that I'm narrowing my to-do list, getting closer to a solution.
Other ways I attempt to take control are by avoiding triggers and by following consistent sleep, eating, and exercise routines. To drown out sounds that exacerbate headaches—cars, voices, noise—I wear earplugs. I go to sleep and wake up at the same time every day, no naps. I adhere to a migraineur's diet—abstaining from alcohol, caffeine, chocolate, nitrites and aged or pickled foods, among many other things—and try to avoid smoky, loud or bright places. I've minimized my schedule and said goodbye—for now—to my athletic days. Walking, tai chi and yoga have replaced running, soccer and tennis. Twice a day I meditate, my mantra being "There is no pain"—believing that by repeating it, it will become true, that my mind will listen to my heart.
It's been 24 years of fighting for resurrection, more than two years since I've experienced a pain-free moment. I mourn for the person I could be, but this is my existence. I accept it yet refuse to be defined by it, so I'll continue searching for my lesson and for my freedom. I don't know where the chronic pain will lead me or where I'll take it. What I do know is that life is a challenge—sometimes a disappointment, sometimes a standing ovation—but always a gift.
We Hear You!