A year ago yesterday, tests to monitor my heart landed me in the hospital with full-body muscle contractions, quirky contortions, and breathing difficulties, marking my first major dystonia storm in more than five years. I have lived with dystonia for a decade now; last month marked our 10th anniversary together. Those first few years were especially challenging (and included a 5-day hospital stay and two years of chemo), but I eventually found a rhythm of lifestyle that brought me as close to a remission of symptoms than I could have hoped for since being diagnosed. For a few years, I felt like I was truly learning how to master life with dystonia. Perhaps because of this presumptuousness, I was not at all prepared for the magnitude of neurological crisis brought on by a few, ‘run-of-the-mill’ medical tests. Nor could I have predicted how arduous the road to recovery would be.
And still, there are nights when my body is a tornado if spinning limbs, tangled in the sheets. Days when my legs unexpectedly give out from under me. Fun occasions that get cut short when a splitting headache signals that shit’s about to go down with my neurological system.
There have been many things I’ve had to grieve this past year as well. Lost work opportunities. Missed social events with friends. Postponed writing projects and courses. Special family events I had to cut short, if I could make them at all. Most heartbreakingly, being unable to attend the concerts and games of my beloved niece and nephew. And there have been many days that have been lost to bodily chaos and recovery. So much time kept slip, slip, slipping away.
On this healing journey, I’ve unlocked new dimensions of my identity and new ways of expressing my self. After a lifelong battle with my long locks, I shaved my head and embarked on the natural hair journey with a delighted grin on my newly uncovered face. I’ve discovered fresh and fun means of expressing my creativity (for functional purposes, even), when writing behind the computer has not been an option; now, more than ever, I believe in the incredibly healing power of art.
I’ve been touched by the unexpected kindness and generosity of friends, especially those willing to sit by my side on the couch for hours when that was the extent of my activity level for the day. And I’ve been a fount of appreciation for the healthcare providers who carved time in their crazy-busy schedules to trouble-shoot with me, fine tune my medical cocktail, and even make a house call or two.I’m especially grateful for my life partner–over this past year, our bond has grown even deeper than before.
Most people pledge ‘in sickness and in health,’ with no concept of what that really means. But my husband? He embodies the commitment with every breath and action he takes. He’s gone above and beyond in supporting me every step of the way. Sometimes, I think this past year has been even harder on him than it has been for me; watching me endure so much cannot have been easy. Yet he’s done it with tremendous grace and abundant love. Without him, I wouldn’t be sitting here, writing these words, with ever growing hope in my heart for this next year ahead.