What You May Not Know about TM and Paraplegia…this is my story
Like every other weekday, I got out of bed on December 14, 2005, and proceeded to get ready for work. While fixing my coffee at the kitchen counter, however, things began to change. All of a sudden, my feet began to tingle as if they were asleep. The sensation began to creep slowly up my legs and in a matter of only thirty minutes I was sprawled out on the dining room floor. I managed to make it to the table in time to grab my cell phone as I slowly sank to the floor. I immediately dialed 911 and within a few minutes I was off to the hospital, scared out of my wits. As the hours wore on the intensity of the pain became unbearable. I was screaming at the doctors to fix “it” because the pain and the tingling were turning into numbness in my feet and toes. I could not move my legs at all. Paralysis was setting in and no one could stop it.
After several days of numerous scans, x-rays, spinal taps and blood tests, I was finally diagnosed with acute onset Transverse Myelitis (“TM”). As research would show only 1-8 in every million people are diagnosed with TM and on that day, I was one of the “chosen ones”. No wonder the doctors and nurses at the local hospital did not know what I had. We quickly learned that I had acute idiopathic TM, which is an inflammatory attack of the myelin surrounding the spinal cord making it impossible for messages from the brain to travel undisturbed down the spine.
Unfortunately, TM can affect children and adults of all ages, ethnic backgrounds and geographic location. In each case, the level of injury is different. In my case, the injury was at T7 or Thoracic level, number 7 vertebrae. The damage to my spinal cord was also incomplete, so I ended up with spots of muscle weakness and paralysis. If the injury travels further up the spinal cord, the result can be quadriplegia. As it turned out, I was lucky to be living in Baltimore, a stone’s throw from the Johns Hopkins Transverse Myelitis Center.
After a three week stay at JHTMC where I underwent plasmapheresis, large doses of immunoglobulin, numerous scans, blood draws and inpatient physical therapy, I landed at the doorstep of the Kennedy Krieger Institute for Spinal Cord Rehabilitation. Still feeling like I was living in a dream, I commenced my first year as a paraplegic with the will to regain my life as a “normal” person. Thank heaven for my physical therapists at KKI because they worked with me diligently three days a week over the ensuing twelve months. Strapped with braces and a walker, I began the slow process of standing up. It was an unbelievable feeling looking everyone in the face again. There’s nothing like talking to people’s belly buttons while they talk over your head. The landscape from a wheelchair can be difficult getting used to. Even though the folks at KKI were fabulous, my trips to therapy would get further and further apart. I was destined to live the rest of my life with limitations I never imagined.
My experiences at KKI included the opportunity to meet and engage with other patients diagnosed with varying degrees of paralysis. Like you might expect to find, there were young men paralyzed from the neck down as a result of diving and driving incidents involving alcohol. There were patients with MS and TM from three years old to sixty-plus years old. It was very eye opening, emotionally charging and yet, still, quite motivating. Over the course of the year that I worked out at KKI, I would talk to other disabled patients and their families. Whenever a new patient with TM would enter the gym, I would always volunteer to share my story with them and try to give them hope. Many of the families would tell me that they were encouraged by my successes and my progress which meant I couldn’t let them or myself down. The most important lesson I learned during this process was to have constant hope and laughter. I would always joke with my therapists and one time I had to leave the gym because I was making too much noise laughing. That made me laugh even more.
The more I laughed the more my bladder would leak. Imagine forty-eight years old and wetting your pants! The thought of it was so embarrassing and humiliating. I was horrified, but what could I do but laugh. I remember one time when my girlfriend took me to a comedy movie. On the way home, we laughed about the movie until tears rolled down our cheeks. With each new blast of laughter, my bladder would leak a little. We were laughing so hard now that as we exited the car, I realized that my pants were soaked. Then we laughed at that. What else could we do!
What I think most people do not realize about paralysis is that it extends far beyond what the eye can see. Paralysis not only affects mobility. Paralysis can often be accompanied by poor functioning or non-functioning bladders and bowels depending on the level of injury. Bladder and bowel issues are sometimes glossed over by the medical community, but they can be the most frustrating part of being a paraplegic. Experimenting with the digital method, a combination of laxatives and stool softeners or just pure laxatives is a never-ending challenge. Then there is the unthinkable, sexual organ failure. For children and older adults, this might not be a problem, but for a middle-aged, sexually active individual, it can be very disappointing. My husband and I have had to discover other ways to connect sexually. We laugh about the ways my body can now be positioned. I will stop there for the faint of heart.
Survival as a paraplegic requires extreme imagination and constant laughter. I am not working at the present time, but I have been able to offer my services as a babysitter for small infants. After all, they cannot move any more than me.
~ Laurie Zissimos
