When I was diagnosed with cervical dystonia—an involuntary contraction of neck muscles that causes the head to twist to one side— years ago at age 30, I went from being fully functional and very active to completely debilitated. Sitting or standing for just minutes caused unbearable pain and I experienced severe, involuntary muscle contractions in my neck that pulled my head to the side. Most days I rolled around on my floor trying to find relief.
I veered from sadness and despair to anger and bitterness. I spent hours grieving the life I lost, unwilling to accept this new one. For the next five years, those negative emotions kept me from benefitting from any treatment. Instead, I was in fight or flight or freeze mode. In that environment, healing was nearly impossible. Only when I chose to learn how to come to terms with the reality of my new life and reinvent myself did I experience change.
That shift helped calm my mind, and in turn gave my body some relief. It was minor, but enough for me to respond better to treatments. It also motivated me to take better care of myself. Then like a domino effect, as my health improved so did my attitude. Doors began to open, and my life took on new meaning. This did not happen overnight, but each day built on the previous day. The less I resisted the reality of my life, the better I felt.
Coming to terms with my condition isn’t the only way I’ve improved, but it’s an integral part of the process. For me, that means talking to my pain. I ask it what it needs then take steps to try to improve it by changing my habits and behavior. I work with it. I don’t fight it. When I fight it, my stress spikes and everything falls apart.
When the pain is particularly tough, I ask myself, “How do I make the best of a difficult situation?” This keeps my emotions from taking over which keeps my symptoms from getting out of control, or further out of control. I know I can’t always stop the pain, but I can modulate my emotional response to it. When I get angry, the pain gets worse.
For too long, I focused on how to treat the physical symptoms and neglected the power of the mind and the role of my emotions. I learned to ask myself what I could do every day that could make a difference in my situation.
Over the past 15 years, I’ve crafted a self-care regimen that makes me feel better—and makes me better around others. Here’s what it looks like.
Eating better. I was so depressed after my diagnosis that I numbed my feelings and pain with comfort food and beer. My diet consisted of fried and processed foods, pizza, bread, sandwiches, crackers, and chips. Over five years, I gained 150 pounds. Realizing I was slowly killing myself, I resolved to overhaul my diet. I eliminated dairy, grains, refined carbohydrates, and sugar or sugar substitutes. I primarily eat fresh fruits and vegetables, lean meats, fish, eggs, and raw nuts. Once I changed my diet and began to exercise, I lost 150 pounds in less than a year and my pain decreased substantially.
Exercising more. With my parents’ encouragement, I begin walking a little each day—just to the end of the driveway and back. After weeks of that, I walked to the end of my street. Eventually, I began walking two miles twice a day. As I began to lose weight and feel better, I added other types of exercise like swimming and biking. I also do core exercises on a stability ball, lunges, squats, and lift light free weights. To me, these exercises are boring, so I set a time limit, which makes it more fun. My exercise is moderate compared to how it was before dystonia, but I am thrilled I can do anything at all.
Sleeping soundly. I always feel better after a good night’s rest. To ensure that, I’ve created an environment in my bedroom that encourages sleep. I keep the room cool and dark. (I use blackout shades and wear a mask.) I run a fan for white noise, which I find calming. I never work or use my phone or computer in the room. It’s reserved for relaxation and romance.
Communing with nature. The colors and sounds of the outdoors are calming, so I spend time resting by a pool, beach, or my yard, or go for walks in the park or my neighborhood. I also love to watch sunsets and be near water, so I walk by a river at dusk. Most of my creative ideas happen during these times.
Reducing stiffness. To loosen tight muscles, I place aromatherapy heat packs on my back, shoulders, and neck. To ease sore or inflamed muscles, I apply ice, which also calms my restless mind. I use trigger point tools—my favorite is called a shepherd’s crook—for my back and shoulders to reduce tension and pain.
Protecting my mind. I take regular breaks from technology to improve my focus and concentration. I also practice meditation and avoid high-energy people. I have a sensitive nervous system, so my ears and eyes and other senses are easily overstimulated. I surround myself with people who motivate and inspire me. Setting boundaries is critical to maintain this safe circle.
Enriching my life. I carve out time for writing and gardening. I love spending time with friends and family, but I also have come to cherish time alone. Whenever my mind is at peace, my body is always much more at peace.
Tom Seaman is a life coach in Wilmington, NC, and the author of two self-published books: Beyond Pain and Suffering: Adapting to Adversity and Life Challenges and Diagnosis Dystonia: Navigating the Journey.
