Coming to terms with painful challenges is hard!
Life is filled with endless ups and downs. The first 5 of my ongoing 20 years living with dystonia were pretty much nothing but down times. I experienced the most horrible pain ever in my life and a complete loss of identity due to the dramatic changes in my life. I went from being an entrepreneur, athlete, full-time graduate student, and socially active to a disabled person in a very short period of time. To say that my life changed overnight is pretty accurate.
Back then, I didn’t know how to deal with it. I was riddled with anxiety and depression, as well as intense involuntary muscle contractions that rendered me incapable of doing the most basic of daily tasks. Accepting, or coming to terms with my situation, was something I refused to do, but I also didn’t have the tools at the time to know how to do this. Instead, I medicated with food and alcohol and gained 150 pounds. On top of dystonia, now I had to also deal with morbid obesity, hypertension, a much worse body image than just that which came with dystonia, and a complete lack of desire to be a part of the world. As a result, I became very isolated and felt like a complete misfit.
In order to find some sort of meaning and purpose in my life, and feel healthier again, I had to find ways to overcome my intense anger and sadness. I had to come to terms with it emotionally to wrap my head around it before I was able to find treatments and self-care that proved helpful. I had to learn and then practice how to slow down my racing, catastrophic thinking mind. When I did, which is still an ongoing practice, I found ways to lose 150 pounds and gain greater control of my dystonia symptoms. I attacked this disorder from a number of different angles. You can read more about the techniques I use, as well as many other options available to us, in my 2 books: Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.
Learning how to manage our stress and emotions is extremely important because when we are chronically experiencing stress, anger, grief, fear, anxiety, depression, etc., we are physiologically incapable of healing or feeling better. In other words, when the body is churning out the pro-inflammatory chemistry created by the emotions I mentioned, the body is in a state of inflammation where no healing can take place. Except for the rare few, there is no drug, supplement, or treatment that can override the pouring out of pro-inflammatory chemistry from chronic stress and heightened emotions. This is a key component that too many patients and doctors are missing.
With years of dedication to what I found that helps me with stress (meditation, prayer, affirmations, breathing exercises, mindfulness techniques, progressive muscle relaxation, etc.) which may be different for you, my mind and body were more at ease, allowing for treatments and therapies to be more effective. With greater control of my symptoms, life changed and new doors opened for me to learn and grow.
It took me 5 years, but I learned that I had to work with my physical and emotional pain to find peace and promote healing. This gave me a new outlook on a life I thought was taken from me by this health condition. Dystonia changed things in major unexpected and unwanted ways indeed, but it opened doors to important life classrooms.
Dystonia has been the greatest challenge of my life, but also my greatest teacher. When I learned to live with it and not fight it so much, I was better able to deal with the physical and emotional pain. It helped relax the constant fight/flight mode I was in which gave my body a better chance to respond to treatments and self-care more effectively, practices I have to maintain to this day. Click here to read about my daily routine to help manage my symptoms.
With years of dedication to the things that help me, I have been able to create a new life for myself. It isn’t the one I planned or for the most part, necessarily wanted to have, but it is the one I have so I do my best to make the best of it and live with joy as much as possible, trying my best to take nothing for granted, like I did before dystonia when life was so much easier.
I made a promise to myself. I said, “I do not know why this health issue happened to me and I lost everything, but I do know one thing for sure, I refuse to go through this for nothing!” I first heard this from author and motivational speaker, Sonia Ricotti. Since then, I became a life coach, speaker, and author of 2 books, among doing other cool things. This doesn’t mean I don’t struggle with dystonia. I certainly do, but it is different than the intense suffering that existed for years, and my mental anguish is not so intense on those really tough days.
Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, as well as finances, family, or career, but they exist. When we shift our thought patterns, things can change. As Napoleon Hill wrote in Think and Grow Rich, “One of the tricks of opportunity is that it has a sly habit of slipping in by the back door, and often it comes disguised in the form of misfortune, or temporary defeat. Perhaps this is why so many fail to recognize opportunity.”
I can surely testify that this was the case for me for a long time, but thankfully not as much anymore. I try to find the opportunity in all obstacles, which keeps me optimistic regardless of how hard a particular day might be. If you are struggling to find your way, I hope a little of my story and approach are helpful.
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 writer for Chronic Illness Bloggers Network, The Mighty, Patient Worthy, and The Wellness Universe. 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.
Thank you for sharing. It gives me hope after reading your story that CD can be control with exercise, positive attitude, and like you said, embrace it. I have been diagnosed with CD recently and believe the spasm is the body’s way to protect my neck from degenerative disc. My spine surgeon suggested botox.
What was or is your experience with it botox? Thank you
Hi Gloria – That’s interesting what you said about your spasms functioning to protect the degenerative disc. I have had similar changes in my neck. Botox is helpful for many people, but unfortunately for me it was never helpful. Be sure if you get it that it is administered by someone with a lot of experience. Best wishes and please let me know if I can be of help with anything.
Hi Tom,
Your articles are incredibly helpful to those of us with dystonia. Thank you again for your words of wisdom during 2021 🙏 I’m in a much better place physically this year ( thanks to Abbie , Botox and the likes of you )
Can I ask you if you have a specific method for doing progressive muscle relaxation? Thanks
Thank you Helen. I appreciate the very kind words and it is so great to hear you have been doing much better this year! For progressive muscle relaxation. I like to start at my feet and work my way up to my head, focusing on my foot, ankle, knee, hamstring, hip, glutes, low back, mid back, etc. etc., by either tightening the muscle for 3-5 seconds and then releasing it with a breath out, visualizing the breath going out of the area I am focused on. OR I just pay attention to the body parts mentioned above one at a time and just take notice how they feel, and then visualize them relaxing or feeling the way I want them to, and then go on to the next body part.
Tom,
I appreciate you! Thank you for sharing your experiences good, bad and ugly.
I have purchased and almost thru “navigating the Journey ”
My your holidays be bright and with those you love
Betty
Hi Betty- Thanks very much for letting me know that you enjoy these articles. I appreciate it very much. Thank you also for getting my book. I hope you find it helpful. All the very best for your holidays as well!
Hi Tom: As usual your e mails seem to arrive when I needthem the most. At age 84 I am struggling to stay positive after this diagnosis of Cervical Dystonia but you do give me the courage to try once again to make the most of every day. Thank you . Have a wonderful Holiday season.
Hi Lynne- Thanks very much for letting me know that this came at a good time for you. Acceptance, or coming to terms with dystonia is very hard. Regarding staying positive, I want to share this other blog with you about being positive. https://www.tomseamancoaching.com/if-youre-in-pain-dont-be-positive-be-honest/
If I can ever be of help, please don’t hesitate to reach out anytime. In the meantime, I hope your holidays are filled with joy and laughter.