Looking Back With Grief and Gratitude On Last Year’s Road to Recovery

Putting on a Brave Face At the Hospital

Putting on a Brave Face At the Hospital

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.

 It has been a long, non-linear journey–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

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, 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.

And yet…
And yet, there is so very much I’ve gained that I honor with tremendous gratitude on this bittersweet anniversary. I’ve developed a greater awareness and understanding of my body and what it needs to heal, necessarily redefining what rest and radical self care really mean in order to allow for full rehabilitation after significant brain 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, giving me the encouragement I needed to keep advocating and fighting for my neurological system’s healing too. I gained new tools for managing dystonia crises and 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.

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.

Looking Back With Grief and Gratitude On Last Year's Road to RecoveryI’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.

Comments

  1. Darlene says

    Renee you are a strong determined woman. You are also blessed to share your life with Gary. Keep up your fight and you will succeed. Love to you both , stay well. Darlene

    • themindbodyshift says

      Thanks so very much for your kind words and encouragement, Darlene. I am indeed so blessed to share life with Gary, and I hope that this next year sees many more fun and exciting adventures ahead for us together. Love to you too! -Renée

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