The Painful Path to a New Purpose

thoracic outlet syndrome new career
The onset of TOS forced me to dust off latent interests and develop new skills. It forced me, kicking and screaming, down a dark path into an uncertain future.
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My “wake up and smell the coffee” moment came, ironically, while carrying a cup of coffee. Under that small load, the muscles in my arm gave way. I barely made it to the table before the steaming contents spilled. My arm could no longer support the weight of an eight-ounce cup. I plopped in a chair and sobbed.

I’d always enjoyed physical work. On our acre-plus lot, I turned over the garden, yanked out shrubs, and pruned limbs. Indoors, I painted and wallpapered, vacuumed and scrubbed, chopped vegetables and hung drop ceilings. And that was after work. My thirty-plus-year career as a pediatric physical therapist meant I used my body’s strength and flexibility to perform most every duty of my job. I carried bulky equipment, lifted hundreds of children out of wheelchairs, and used my own strength to support the child and add resistance to their exercises. It was my chosen career path and my passion. My work made a difference in the lives of those precious children. Their struggles toward independence were lessened by my efforts.

But decades of physical work took a toll. A neck injury immobilized me for several weeks. When I returned to work, the doctor prescribed ‘light duty.’ A few months later, my neck was declared healed. 

It wasn’t healed, not really. Something more chronic became my new normal. The muscles in my neck and shoulders grabbed in spasm and became stubbornly resistant to stretch or relaxation. If I sat too long without a headrest, my neck fatigued and ached. When I used my dominant right arm to lift, bolts of electric pain traced a line from my neck to my pinky. A comfortable sleeping position was hard to come by. Most disturbing was an intermittent change in my right forearm and hand: the skin blanched then purpled like an eggplant. Whimpering, I’d cradle that throbbing arm against my chest until the symptoms subsided. 

As is often the case, this intermittent presentation never happened in front of my family doctor. Thankfully, she trusted my description of the symptoms and recommended I receive physical therapy (PT). After weeks of therapy and faithful performance of my home program, there was little change in my status. My family doctor referred me to an orthopedist, then to a vascular surgeon. Tests were ordered and performed, all with normal results. Then came a neurologist and a chiropractor. More evaluations, more tests. Again, no significant findings. As each specialist determined that their area of expertise would not shed light on my problems, I was referred back to my family doctor. To say she and I were frustrated is an understatement. 

On the advice of the physical therapist I’d seen early on, I kept a ‘pain diary’ during this three-year journey through the medical system, jotting down the particulars of my activity and its correlation to the painful blanching/purpling. The trend I saw convinced me that the underlying problem centered in the muscles of my neck and right shoulder. When I used those muscles to produce force, to lift or tug or carry, shooting pain and color change often stopped me in my tracks. 

Steadily, almost imperceptibly, I lost strength and endurance in my right arm. It ached when I held a hair dryer. I needed a stepstool and two hands to lift items from the cupboard. Everyday food prep and cleaning grew harder to accomplish, especially after work when my arm was already sore and tired. To save my strength for my job, my family took over all the basic household tasks.

My husband encouraged me to relax in a recliner, to enjoy this new thing called free time. I felt selfish in my pillowed comfort while those around me bustled with the tasks I’d once performed. But truly, I had no choice. Determined to make the best of it, I surrounded myself with books I’d longed to read and movies I’d promised to watch someday.

Apparently, my someday had arrived.

This more sedentary time led me to rediscover a nearly forgotten love of stories. I lost myself for hours on the page or screen, completely engrossed in the situations and characters before me. I second-guessed story lines, wondering why the writer killed off the only decent man in the whole book or how the filmmakers created that satisfying, full-circle conclusion. 

That’s when I began to write my own stories, just short pieces of fiction and non-fiction. To my surprise and complete delight, a few were accepted for publication. Encouraged, I took a writing course, attended workshops, and read countless books and magazines on the subject. I bit the bullet and began my first novel. Writing gave me a constructive task while I waited for my neck and arm to improve. How wonderful, I thought, to find such an engaging, productive hobby.

I continued to work as a pediatric physical therapist but bad days started to outnumber the good. Gradually, reality sank into my thick head – the problem wasn’t going away. Like the children I worked with, I had a disability. My time of working as a pediatric PT was nearing its end.

Retirement wasn’t financially or emotionally feasible yet. Given my age and the energy drain caused by frequent bouts of pain, a total career change was a daunting prospect. I crossed my fingers, said some prayers, and hoped the right path would reveal itself. And soon.

After another round of specialists and tests, I finally got a diagnosis: thoracic outlet syndrome, TOS. My right arm’s nerve supply was squashed by the spasm in the tight, scarred muscles in my neck and shoulder. My TOS was the result of peculiarities of my own body’s anatomy compounded by decades of muscle overuse. The diagnostician’s recommendation was another round of PT and the addition of massage therapy, with follow-up in one year. Unfortunately, that year saw my pain and weakness go from bad to worse. The only option left was surgery.

In order to free those trapped nerves, a scalenectomy was needed, a surgery which would remove muscles from an area above my collar bone. I’d need to receive PT and really rest (no lifting at all, not even a grocery bag) for a minimum of three or four months afterward. The surgeon expected I’d get pain relief and some return of my arm’s strength and endurance. Of course, he couldn’t predict how much would come back, or if it would be enough to work as a pediatric PT again. The potential loss of my career path, the way I shared my passion with the world, was hard to contemplate. Stubbornly, I put off a decision until the day I nearly dropped the coffee cup. Surgery was indeed my only option. I dried my eyes and made the dreaded call.

During the long months of post-surgical recovery and rehab, I again fell in love with stories. I created characters and threw them into plotlines. I finished the novel I’d started and began a second. Months flew by. That’s when it hit me – this writing thing, this is more than a hobby for me. This, too, is a passion. By coaxing my thoughts into words, I can continue to make a positive contribution to the world. I no longer use the tools of physical strength and exercise science to impact a child’s development. These days, research, imagination, craft, and creativity are my tools of choice.

The onset of TOS forced me to dust off latent interests and develop new skills. It forced me, kicking and screaming, down a dark path into an uncertain future.

Now I am in that future. I am content here, and so very, very thankful. 


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