Pride Wasn’t Enough to Overcome Pain and Overload

Because I want to contribute to our family, I value work. Even if I weren’t married with children, I would want to be employed and take care of myself financially. However, the emotional need to be productive often runs up against my physical limitations.

If I could earn a living sitting at home and writing, that would be ideal. I haven’t the networking skills (or confidence) to build a career as a creative writer. Like so many writers, my fallback was teaching. I am a good teacher, a decent (if not great) scholar, and a passionate creative writer. However, the teaching position I managed to secure was 114 miles from our house.

In August, I was excited to end my extremely long and painful commute to the university where I taught during the 2023-24 academic year. The idea of a local job, doing things I enjoy, seemed like the perfect opportunity to shift away from higher education. My primary reason for leaving the university was the horrible pain I experienced after about an hour into the commutes to and from campus. A secondary reason was the lack of time I had for my daughters… which goes back to commuting between five and six hours each day I taught.

In the last few months, I have met with seven physicians and a doctor of physical therapy. Not for the first time in my life are experts asking me how I can be as active as I am. Apparently, I should be in bed, remaining motionless. I certainly shouldn’t be sitting at a desk typing (or dictating).

The last four months remind me that my body is flawed and I cannot overcome physical limitations through sheer willpower.

• August 19: Started an open office, cubicle desk job.
• September 12: Began treating myself for severe neck, shoulder, and arm pain.
• October 13: After-hours clinic and emergency room visits, with a CT scan of the cervical vertebrae identifying a herniated disc.
• October 20: MRI of the cervical vertebrae, which required securing my right arm with a restraint.
• October 21: Consultation with a spinal surgeon, who verified the herniated disc along with degenerative vertebrae and a bone spur in my neck.
• October 22: Spinal injection to reduce swelling and manage pain.
• October 29: Follow-up with our family physician.
• November 14: Resigned from the desk job.
• November 27: Follow-up with our family physician.
• December 10: Electromyography (EMG) test of right arm and shoulder, verifying a pinched spinal nerve and carpal tunnel syndrome.
• December 11: Started physical therapy two to three times a week, through January 2025.

Pain has to reach an extreme level for me to give up trying to be productive. I even managed phone interviews while in an Intensive Care Unit following a subdural hematoma. That was serious pain.

Throughout my life, I have experienced pain. I was in a scoliosis brace in junior high and part of high school. Driving long distances has always been difficult, with severe lower back pain. I also have difficulty using my right arm and hand. The arm experiences tremors and cramps, which creates some challenges when driving, too.  I’ve addressed my physical limitations several times. I have a complicated physical history, much of it originating from my birth. Quoting from my 2006 assessment:

History is complex in his instance. He was delivered by breech presentation; forceps were utilized, entering the left frontal region, resulting in skull and facial fractures. Other birth injuries entailed spine trauma, temporal lobe damage, fractured left arm, brachial plexus injuries, and right-sided paralysis, which lasted approximately nine months. With respect to early milestones, of course, motor skill development occurred slowly, and Scott now uses a cane. Linguistic capabilities were strong…. Physical therapy was provided early on, as well as three times later, in seventh and eleventh grades, and again in 1997. Throughout time, Scott has grappled with sensory sensitivity in all realms. He uses dark glasses for light sensitivity. Tactile defensiveness appears to exacerbate with stress.

With respect to further medical history, Scott encountered palsy tremors and ghost pains in sixth and tenth grades and again in the late 1980s and 1997 through the present. […] Erb-Duchenne brachial plexopathy and palsy were diagnosed. […] Seizures ultimately surfaced in 1997 and, in June 1999, partial complex seizures were noted…. Migraines and seizures seemed to exacerbate in 2002…. Since October of 2006, the frequency of seizures has decreased to one or two episodes per year. Additionally, Scott is sensitive to heat. Sleeping is problematic for him. He seems to require only a few hours of nightly rest, indicating that he “works best at night.” Eating seems to be reasonable. Various diagnoses have been offered throughout time, including bipolar disorder, obsessive compulsive disorder, Attention-Deficit / Hyperactivity Disorder, mental retardation, high-functioning autism, and Asperger’s syndrome.  […] Additionally, complex partial, Jacksonian, and night seizures have been described….

The new job was not a good match for my Autistic traits or my physical limitations. The sensory overload started immediately, thanks to an open floor plan. Cubeville is no place for most people and certainly the worst possible workspace for me. The lights were too bright, the space too loud, and the smells were intense. I tried to find solutions for my sensory overload, and largely failed. I’m a person who won’t wear a hat or gloves in freezing temperatures, so wearing noise-canceling headphones for more than an hour or so was excruciating.

Less than a month into the job, my right hand and arm were in constant agony. My neck was so sore I couldn’t sleep for more than two hours at a time. I took massive amounts of over-the-counter painkillers and hoped for the best. I ended up in an emergency room, barely able to move.

The spinal surgeons were hopeful that a steroid injection directly into the spinal column would reduce my pain. It didn’t. In fact, the pain increased for the next three weeks.

The doctors who performed the EMG said the carpal tunnel readings would suggest surgery, but since I have Erb-Duchenne brachial plexopathy, surgery might not resolve the pain. They also noted how active my nerves were along the upper arm and in the shoulder, which is why my arm trembles.

Unless you’ve experienced chronic, severe pain, it’s hard to understand. I get why people would end up addicted to painkillers. It’s easy to see why people in pain make horrible, self-destructive decisions.

I did not want to quit the office job. I’m unlikely to find a teaching post close to where we live. This felt like my one and only chance to be employed this school year. Yet, it was causing my body to fail. I was useless as a parent and spouse. By mid-November, I couldn’t contain my frustration with the pain any longer. There were other issues, as well. My patience was quite worn by the sensory overload, physical pain, and work environment.

Tolerating most social interactions is difficult enough without pain and exhaustion. My rigid honesty was proving problematic, as it often does. The workplace was affecting my physical and mental health. Of course, I have been “programmed” by experience to blame myself for everything (I apologize often), so when I was told that I needed to change how I communicate, it was a reminder that others perceived me as “broken.” As if I haven’t tried to change my personality for at least 50 years. I am well aware that I am not charming or good with people — and I have tried to years to change. Fighting Autistic social traits is self-defeating and emotionally devastating.

Someone with my educational background should be employed. Plenty of smart people, many smarter than me, don’t push through graduate programs. Earning a doctorate demonstrates how hard someone will work to get through an unreasonable process. But, the social skills of being a student aren’t as demanding as being an employee.

Pain cycles. It will not remain this severe. It will also return if my experiences are evidence. I need a better approach, a better way to be productive when my body cooperates instead of trying to push through the pain.

Again, working from home would be ideal. The second-best option would be teaching close to home. I’m unsure how to make that a reality right now. Recovering has to be my priority.