The End of the World as I Knew It (and I feel fine)

By Sue Lamoree

On my fortieth birthday, I was diagnosed with 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 story encourages people to have courage and faith as they read my humorous, spiritual and sometimes challenging anecdotes about life from a quadriplegic’s perspective.

Unlike most people, my symptoms manifested over a period of months. I noticed I wasn’t able to walk short distances without requiring frequent rest intervals. My immediate reaction was to 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 an underlying fear that haunted me from the onset of my symptoms.

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, so 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 everyday 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.

Please visit my website keeprollingon.co for more of my story – “How to Train Your Demons, finding joy while living with a disability.”

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