By Tom Seaman
Editor’s Note: With September designated as Pain Awareness Month–the National Pain Report is welcoming personal stories from the chronic pain community about how they’ve dealt with their chronic pain. This is the first contribution:
It was Summer 2001 and life was great! Awesome friends, a partner in a successful company, pursuing my Master’s degree in counselling, playing sports, and travelling. I was living a good life and things were going as planned, until I noticed changes in my body; stiffness and pain in my neck, involuntary movements, and trouble with my balance.
I saw many doctors over the course of a year before being diagnosed with dystonia. Dystonia is a neurological movement disorder that causes muscles to involuntarily contract, producing painful, awkward movements and postures (imagine the pain of a Charley horse that never goes away). Performing everyday tasks such as sitting, standing, walking, driving, shaving, brushing my teeth, combing my hair, eating, talking on the phone, etc., became almost impossible.
By the time I was properly diagnosed, I was in such extreme pain and disfigurement that I was pretty much unable to do anything on my own. From the forceful muscle contractions in my neck, my head was stuck in a turned position and pulled towards my right shoulder, which significantly worsened with any type of movement because of the intense spasms. I literally lived on my floor for years because it was too painful to sit or stand. It was pain unlike anything I knew existed.
I was disabled to the point that I had to drop out of graduate school, give up work and social activities, and move in with my parents because I could not function without help. The transition from an active, independent person to a disabled person, almost completely dependent on others, was devastating.
After many treatments that had little benefit, I fell into a pit of depression, became isolated, and experienced powerful anxiety and panic attacks. I medicated with alcohol to numb the intense physical and mental pain, and had an awful diet. Within 5 years, I weighed around 330 pounds. I didn’t recognize myself. I was a stark contrast to the happy go lucky, 180-pound former athlete. Life was so brutal I almost ended it.
In December 2006, I caught a stomach virus. During that time, I lost about 15 pounds. Getting sick was not the type of motivation to change I would have chosen, but it was exactly what I needed to start putting my life back together. A blessing in disguise that saved my life! After losing those 15 pounds while I was sick, I wanted to keep that trend, so I changed my diet and began exercising (for weight loss and better chronic pain management). Within a year, I lost 150 pounds and my pain was more manageable!
People often say to me that I must have a much better attitude now that I’ve lost all the weight and learned to better manage my pain. My response is typically, “Adopting a better attitude is what motivated me take the steps necessary to change my life.” Don’t get me wrong; my attitude is certainly much better and I absolutely feel better, but had my attitude not changed prior I never would have been motivated to change my lifestyle.
Making changes is all about finding meaning and purpose. Mine was two-fold; I was embarrassed at how I looked because of my dystonia and morbid obesity, and I wanted to reduce my weight to eliminate chances of developing other health problems and live with less pain. To put it simply, I didn’t want to suffer anymore.
One of my main motivators is to never forget the feeling of being that sick, and to be grateful for the state of health I have achieved. I still have a long way to go, so I do my best to appreciate what I can do each day, and do it with passion so I stay on a good path. I still have pain issues with my neck and back, but it is night and day compared to the torture I once lived. I just make the very most of what I can do each day and ALWAYS make sure to acknowledge my efforts to maintain a positive mindset. Life may not be what is used to be, but I don’t dwell on the past. I thrive in the present.
My experiences led me back to school in 2012 where I became certified as a life coach so I could help others with their challenges. In 2015, I published my book, Diagnosis Dystonia: Navigating the Journey, which was recognized by the Michael J. Fox Foundation. I wrote this book to give others hope and inspiration, as well as guidance for how to better cope with chronic pain.
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 to grow and become better people, and every day I am grateful for the chance to help myself and others achieve their personal best.
My message to anyone facing a difficult health condition or other obstacle: you are not alone, hope never dies, and every single day is an opportunity to get better. Believe in yourself and never give up, always trusting the strength you have within.
Tom Seaman is a chronic pain and dystonia awareness advocate, health blogger, motivational speaker, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone living with any life challenge. He is also a Certified Professional Life Coach in the area of health and wellness. Tom volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, WEGO Health as a patient expert panelist, and Chronic Illness Bloggers network. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @Dystoniabook1 and Instagram.