Last month was my 10th anniversary of living with dystonia. We’ve been together now for longer than any of my romantic relationships thus far. And like the most stormy of relationships, you could say we’ve had our share of dramatic ups and downs.

Those first few years were especially challenging–including a 5-day hospital stay and two years of intensive immunotherapy. Yet, I eventually found a rhythm and lifestyle that brought me as close to a remission of symptoms as I could have hoped for since being diagnosed in 2010. For an extended season, I felt like I was truly learning how to master life with this neurological movement disorder.

But a year ago yesterday, tests to monitor my heart landed me in the hospital with full-body muscle contractions, violent contortions and breathing difficulties, marking my first major dystonia storm in more than five years. Perhaps because of the presumptuousness that I’d somehow figured this thing out, 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.

The Long, Non-Linear Road Forward

It has been a long, non-linear road forward–a rollercoaster of highs and lows and sudden twists that I find myself still navigating today. Don’t get me wrong–I’ve also made incredible progress over the last 365 days. As I regained my stability to walk independently, I celebrated the moments when I discovered that I no longer needed assistance in the shower and that I could stand long enough to whip up scrambled eggs all by myself. I went from being unable to tolerate much bright light or many sounds for any real length of time to being able tolerate dining out (if I’m wearing my BLUblox glasses) and to playing the guitar and singing my own songs every morning for the last, couple months.I find myself dancing almost daily now, and my husband and I enjoy our regular walks in nature. In these sparing days of winter, I once again welcome the full rays of sunlight on my face.

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.

Art Heals A Grieving Heart

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, I’ve been unable to attend the concerts and games of my beloved niece and nephews. And there have been many days that have been lost completely to bodily chaos and recovery. So much time slip, slip, slipping away.

And Yet…Silver Linings

And yet, there is also so much I’ve gained that I need to honor on this bittersweet anniversary. While dystonia has been arguable my most challenging adversary, it has also been my greatest teacher.

Because of it, I’ve developed a greater awareness and appreciation of my body. I’ve gained a deeper understanding of what it truly needs to heal. I’ve had to redefine what rest and radical self care really mean in order to make them a priority. This has been a non-negotiable to fully rehabilitate after significant neurological trauma.

I also finally made the decision to ditch hormonal birth control, once and for all, during my seven-hour stay in the ER. After years of menstrual mayhem, my reproductive system began healing itself startlingly fast. This gave me the encouragement I needed to keep advocating and fighting for my neurological system’s healing too.

I gained potent, new tools for managing dystonia crises. I began diligently following a carefully curated progression of daily exercises to recalibrate the crossed wires of my neurological system, courtesy of the expert instruction and guidance of Dr. Joaquin Farias–directly and via his online dystonia recovery program.

Re-Defining Me on This Healing Journey

Along this healing journey, I’ve unlocked new dimensions of my identity and new ways of expressing myself.  As writing behind the computer became severely limited,  I rediscovered the incredibly healing power of other expressive arts. I’ve discovered fresh and fun means of expressing my creativity–and even my personal style.

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.

Adding to my smiles have been the unexpectedly kind and generous gestures of friends. I’ve been extremely grateful to 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 discovered a wellspring of appreciation for the world-class healthcare providers who carved out time for me in their crazy-busy schedules. There were times when my quality of life literally hinged on their willingness to troubleshoot with me, fine-tune my treatment protocol, 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.