Overcoming Painful Adversity and Paying It Forward
by Tom S
(Wilmington, NC, USA)
In the Summer of 2001, my whole life changed. I left the business world to pursue my master’s degree in counselling and noticed that my head was slightly tilting to the right without my control. I thought I slept wrong or was overly stressed, but it kept getting worse.
I saw around 12 different doctors and therapists. None of them knew what was wrong or how to help. The involuntary muscle contractions in my neck strengthened and pain set in. My head was now pulled towards my right shoulder and locked in position at a 45-degree angle. It was terrifying! It was like something took over my body and was moving it without my permission.
I researched the internet like crazy while in tears from the pain. I finally discovered Dystonia. Everything I read and pictures I saw described me exactly. I then went to a movement disorder neurologist who made the official diagnosis of Cervical Dystonia.
For close to a year prior to this, it never occurred to me or any doctor I saw that it might be a neurological problem, so I was never sent to a neurologist. This is sadly very common for many people and a great example of the need for education and awareness. By the time I received a diagnosis, my neck muscles felt like they were locked in a constant charley horse. Other than go to the bathroom and get food, I spent my entire day rolling around on my floor in writhing pain.
I had to drop out of graduate school, quit working, and move in with my parents. I could not function without help. The transition from an active, independent person to a sedentary, disabled person reliant on others was devastating. I was only 30 years old in the prime of my life.
My parents had just retired, so my illness also changed their lives in ways they never expected, having to now become caregivers rather than relaxed golfers and beachcombers.
None of the traditional treatments for dystonia were of much help. Some even made me worse. I became depressed, homebound, had severe panic attacks, drank alcohol to medicate the pain, and had an awful diet. In 5 years, I went from an athletic 190 pounds to a morbidly obese 340 pounds.
In December 2006, I caught a stomach virus. For about 2 weeks I was in bed all day alone with my thoughts. I knew when I recovered from the stomach problem I had to make a decision…go back to the unhealthy lifestyle that was slowly killing me or take back control of my overall health, and improve my dystonia symptoms as well, if possible.
I chose to dedicate my entire life to being as healthy as possible and within a year, I lost 150 pounds! I then found a more natural, movement-based therapy approach to managing my dystonia symptoms and to this day have about a 75% improvement.
My life now is better, as are my symptoms, but I am not cured (there is no cure for Dystonia). I still have many problems with my neck and back that takes a lot of work every day to manage the best I can. Some days I can’t do much because of a flare up and some days I can do more. I never know.
Part of helping myself is helping others along the lonely path of rare disease and chronic pain, so in addition to being a patient advocate, in 2012 I became certified as a professional life coach so I could work directly with people to help them with their daily challenges.
I felt a need to do more and wrote my first book, Diagnosis Dystonia: Navigating the Journey. I then felt a pull to do more to reach a broader audience and wrote my second book, Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.
I am also a co-leader of a dystonia support group with over 11,00 members and have written hundreds of articles worldwide and spoken at symposiums in the US and Canada. I share all of this to illustrate how far I have come and to give others hope. I was a guy who once lived on the floor in writhing pain for years thinking life was over. But I am not someone who gives up and I don’t want others to give up either, no matter how dark life gets because we can always find a way out.
I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution. There is nothing that can’t be altered to improve our quality of life. Obstacles provide us with opportunities for us to become better people and every day I am grateful for the chance to help myself and others achieve their personal best.
I am doing my best to turn my mess into a message, which is why I write, coach, and offer support to others as much as I can. Being sick with anything is lonely and scary, but especially something like dystonia and so many other rare conditions that are not well known. To let someone know they are not alone and lend a hand to help can mean everything.