From severe chronic pain and morbid obesity to a joyful bike rider!
When you look at the picture below, you see a regular guy riding a bicycle; and that would be correct. I am pretty much just a regular guy doing a regular, everyday activity. However, this wasn’t always the case. What you don’t see in this picture is a former morbidly obese, depressed, angry person in severe, chronic pain from dystonia that I developed in 2001.
When dystonia entered my life, everything stopped, as everything I did was no longer possible for me to continue. Work couldn’t be done. My masters degree that I was pursuing at the time quickly became a lost dream, I couldn’t travel, go out for a meal or to the movies…heck, I could barely sit or stand without crying pain.
Because of my sedentary lifestyle with disabling pain, a terrible diet, and medicating myself with alcohol, I gained a lot of weight. I was well over 300 pounds, a long way from the 190 pound athlete I was before dystonia began. I was a recluse, hiding in my house for years, embarrassed and ashamed at what my life had become.
Five years after my diagnosis, I reached a point where I was afraid I might die from the punitive lifestyle I chose for myself; all done for the purpose of avoiding my physical and emotional pain from dystonia, but my escape actually made me worse so it was a fruitless endeavor. A decision had to be made; continue this destructive lifestyle and suffer the consequences, or make a change a get busy living. I chose to live.
I wanted a different life and would do anything to make it happen. Each day I took baby steps by exercising and changing my diet. Each day I added more things to lose weight and also find strategies to gain greater control of my dystonia symptoms. After a couple years of fully dedicating myself to health, I am proud to say that my dystonia symptoms have improved at least 75% and I lost 150 pounds and kept it off! I have created a chronic pain/dystonia lifestyle that includes many, many things to keep my symptoms in check. Please see my book, Diagnosis Dystonia: Navigating the Journey for more information.
Unfortunately, walking is not as big a part of that lifestyle anymore because of some problems in my back that make it too uncomfortable to go far, so I took to riding a bike around the neighborhood. I felt like a kid again so I began to ride further. Wow it felt good! While I don’t ride a lot at one time, maybe a couple miles at most, I do enough to get my heart rate up and break a sweat. Some days I will push it a little and get in a good workout, while other days I will roll around and just enjoy the scenery, something I missed out on for way too many years.
I then decided to write a book to help others learn more about dystonia and ways in which they can also manage the physical and emotional symptoms of this awful condition, which goes way above and beyond what I am sharing in this short blog. It is called, Diagnosis Dystonia: Navigating the Journey. I am proud to say that it was recognized by the Michael J Fox Foundation and added to their suggested reading list! In 2021, I published my second book, Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.
To everyone who sees me riding a bike that doesn’t know my story of pain, obesity, and wanting to die, I am just another person out getting some exercise. This is true, but what they don’t know is that this is a guy who almost wasn’t even here at all. Most importantly, they don’t see the immense internal joy I now feel just to be able to sit on the bike again, let alone ride it!
So grateful to be alive, I love riding around and seeing a fox run by or a rabbit staring at me from the bushes thinking it is camouflaged and I can’t see it. I love seeing the colors of the sky change in the evening as I ride. I love feeling the wind on my face, the way the bike banks on turns, and how my heart feels beating through my chest; things I never thought I would experience again after my diagnosis…ever!!
To anyone looking at this picture it appears that I am just a guy out enjoying a bike ride…and you are absolutely correct. Even though I still have pain and muscle contractions/spasms from dystonia, for the first time in years, without worry or fear, I am finally just a guy out enjoying the ride…the ride of his life!
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 and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. 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.