How getting lost in physical and mental pain helped me find myself
In the summer of 2001, I developed a neurological movement disorder called dystonia. Dystonia is the third most common movement disorder after Parkinson’s and essential tremor. In the very beginning, I saw chiropractors, medical doctors, nurses, massage therapists, physical therapists, psychologists, internists, and orthopedists, among others, none of whom helped or even knew what was wrong. Within 8 months and with no diagnosis, I was disabled to the point of barely being able to function.
Utterly frustrated, I stopped all care and began researching the internet like crazy where I discovered dystonia. I then sought out a movement disorder neurologist who made the official diagnosis. Whew! What a relief…sort of. Now what? What do I do with my life now? I had a diagnosis but I was in too much pain to continue pursuing my masters degree and I certainly couldn’t work. Social events were also out of the question. It was just me and the TV all day long as I rolled around on the floor in pain beyond words. Even worse, no treatments at the time were helping.
So I did the only things I knew how to at the time. I grieved. I cried. I yelled. I retreated from the world. I drank alcohol to medicate the mental and physical pain. I ate a horrible diet and gained 150 pounds. I wanted and waited to die. Melodramatic? Perhaps, but that literally was my reality for 5 years. I also began to have intense anxiety and panic attacks, fearful of leaving the house. Depression set in and the world seemed like a foreign place to me that I no longer understood or knew how or where to fit in. So I retreated from it as much as I could and lived in my private little bubble.
Something “miraculous” happened in December 2006. I got sick! Yes, believe it or not, getting a major stomach flu saved my life. My dystonic body was forced to relax in bed and do nothing. I couldn’t drink to medicate myself or eat my horrible diet. I was forced to rest and recuperate from the virus. Interestingly, my symptoms receded a bit from all the rest, which helped me think more clearly. I asked myself… did I want to live or did I want to die? Was there a purpose to my suffering with this horrible health condition called dystonia which is foreign to most people? Was the pain worth it?
A resounding yes to all these questions (and more) was screaming in my head. I had no idea at the time what the specific answers were, but I refused to go through all of this for nothing. I felt that if I started by making better decisions about my health, perhaps the answers would reveal themselves. Slowly over time they did. I came to realize that I had lived what I now view as one of my greatest gifts ever.
For 5 years, I had my life as I knew it taken from me so I could build a better one, and one I could and would appreciate far more than the one I had where I took everything for granted. Life before dystonia was easy and didn’t prepare me for the horrors of life with pain and a body that moved on its own like some outside force had taken it over. BUT, dystonia and pain taught me to be tougher and bolder and more resilient than I ever thought I was, and I had always been pretty resilient. Well, dystonia made me 10 times more so and I refused refused refused to let it ruin my entire life anymore.
When the stomach bug flew away after 2 weeks, I dedicated my life to being as physically and emotionally healthy as possible. I changed my lifestyle back to what it was before dystonia. Actually even better. I ate well, I exercised, I practiced stress management, I saw good doctors, and I forgave myself for the guilt I put myself through for developing a life altering health condition. I did not respond well to conventional treatments for dystonia, but I responded well to movement therapy, so that became my focus. Within a year, my dystonia symptoms improved significantly and I lost the 150 pounds I gained. Life was fun again! Even though I still had MANY challenges, and still do to this day that I have to carefully manage, I found my purpose…to help others.
For me, I had to get lost before I could find myself. I had to lose all purpose in life to find my purpose, which I now know is to teach and help others. I believe that is the purpose for all of us and we all do it in our own special ways. I just needed the gift of dystonia to show me my way. Turning away from anger and resentment and turning towards gratitude has changed my life, and it does every single day.
As Charles Lindbergh said, “Success is not measured by what a man accomplishes, but by the opposition he has encountered and the courage with which he has maintained the struggle against overwhelming odds.” For me, dystonia was my opposition and obstacle. Now it is my partner in helping others improve their quality of life and find meaning and purpose, all the while, continuing to find more meaning and purpose in my own life.
If you are feeling as lost as I was, never give up because we never know what stands on the other side of hope. Trust in your resilience and believe you can overcome, even if you have no idea what it will turn into. Continue to search for anything that might help your symptoms to allow you to be more functional, and then carve out your life to fit the new you. It’s okay if it is not the same life as the one before. Maybe this newer version of you will be better. Please be open to this possibility. I know the process is different for all of us, so my way may not be your way, but please don’t ever shut out the possibility that your life challenges are meant to make you better than you were before. Anything is possible if we choose to believe that anything is possible.
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and volunteer writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.