The end of the world as I knew it (and I feel fine)
On my fortieth birthday, I was diagnosed with a condition known as Transverse Myelitis (TM). The life I knew ended that day and a new life began.
The following is an excerpt taken from the first entry of my journal chronicling my experiences with TM over the past twenty-four years. I hope my posts encourage people to have courage and faith as they read my humorous, spiritual and sometimes challenging anecdotes about life from a quadriplegic’s perspective.
“Transverse myelitis is an inflammation of the spinal cord. The term myelitis refers to inflammation of the spinal cord; transverse refers to the pattern of changes in sensation. Symptoms include pain, sensory problems, weakness in the legs and possibly the arms, and bladder and bowel problems. The symptoms may develop suddenly (over a period of hours) or over days or weeks.”
My symptoms manifested themselves over a period of months. I first noticed an inability to walk short distances without requiring regular rest intervals. My immediate reaction—exercise. I spent weeks walking around my neighborhood and running in place in my 550 sq. ft. apartment, without any noticeable improvements.
Next, I noticed the occasional leg jump and that I was unintentionally walking into plants and walls. I knew something wasn’t right, but I was terrified and surprisingly embarrassed. Eventually I visited my Primary Care physician who referred me to a Neurologist. Now I know why doctor’s offices are always equipped with boxes of Kleenex. The neurology specialty was probably the LAST area I wanted to consider. And yet it was the underlying fear that haunted me from the onset of my symptoms.
The Journey Begins
The first order of business was to undergo an MRI of my brain and spinal cord, which confirmed I had a lesion on the C5 level of my spinal cord. Good news—it wasn’t on my brain which could result in blindness, breathing difficulties and speech impairment among other things. Bad news—the lesion was on my cervical spine which meant my entire body was affected by the damage it was causing to my central nervous system.
Apparently, I was already experiencing a degree of paralysis. My next concern—will it get worse? Neurology is a such an inexact science, it wasn’t surprising when the doctor was unable to give me a concrete answer. It was, however, devastating. I was completely unfamiliar with the resources available to victims of spinal cord injuries, so I literally imagined myself confined to a bed for the rest of my life. Fortunately, those images quickly faded as I tried to face the reality of my circumstances.
While dealing with the stress of waiting for results from tests and steroid treatments, I continued my routine by pushing this strange, uncooperative body to work each day. With increasingly unsteady steps, I battled the hustle and bustle of downtown Seattle. I dealt with physical obstacles of stairs, uneven walking surfaces, heavy doors and small bathrooms, all new challenges to my once "normal" life.
Without my consent I was forced to take my life in a new direction. In an instant the minor concerns that plague us all were no longer relevant. How was I to cope with the every day requirements of living, while dealing with the unknown future of my health? Fear overwhelmed me as I tried to imagine the life that was unfolding before me.