When I was asked then, at age 14 in 1994, and today, some 24 years later, what made me “sick,” my answer is usually a buzzer-beater jump shot by the Chicago Bulls over my Indiana Pacers! I answer this way because a few hours of sleep after the game I awoke, still traumatized by the game, but also noting a feeling of nausea, a strong “asleep” feeling in my legs, and a strong and urgent need to void. Instinctively and routinely, I kicked my right leg out of bed and onto the floor. Then, wearily I slid my left leg behind it, and when I shifted to put my body weight onto my left leg, I fell! In disbelief and confusion, I assumed my leg was just asleep and dragged it with me to the bathroom, where I came to the realization that another process that I had taken for granted my whole life was no longer routine. My parents met me right outside the bathroom door, threw a winter coat on me, lifted me, and carried me through the snow.
Even as a 14-year-old, I was aware of the vast knowledge and expertise of medical professionals, the miracles of God, and the promise that when you are young you will have the opportunity to chase your dreams. For me, that was to play or coach basketball, and that was the only thing on my mind as doctors discussed a litany of diagnoses amongst themselves, me, and my parents. I was made aware of the possibility of Guillain-Barre syndrome, then the diagnosis of Transverse Myelitis at T6, but these terms did nothing to erode my confidence that I would be back to “normal” soon. Certainly there was a pill or a procedure that I would be introduced to.
During my 66 days of hospitalization, there were certainly pills and procedures, but it seems the insularity from the “real” world prevented me from realizing the extent of my new self. The 67th day, my first one back home, was the instant that I realized that the wheelchairs, TLSOs, KLFOs, walkers, reciprocal walkers, catheters, and canes were more than just prescriptions, they were my new “normal,” and I cried for the first time during the whole ordeal. The tears were the product of my shame and terror of what I perceived others thought when they saw me, which was an incapable and unacceptable being. Years of introspection has revealed that this was not their perception at all, but was mostly, not entirely, a constructed vision of myself, one that I still hold onto in parts today.
In 2015, an article in the local newspaper led to CBS Sports wanting to do a story on my plight as a basketball coach that had been afflicted with Transverse Myelitis. The producer asked for pictures from earlier years with my assistive devices, and after searching I realized there were none. Reflecting, I realize there were none because in those years I had not embraced my complete self. I made sure I transferred from the wheelchair into standard chairs for photos; canes and crutches were tossed out of images, and braces were certainly covered with clothing. I was and, in some ways, am still somewhat this way because in my nightly dreams and even worst nightmares I can “run” and “walk.” I do not picture myself ambulating in the non-conventional manner that I do, and it is rather shocking to me when I am exposed to it. It’s still a hard image to process let alone want to capture or embrace as a portrait of myself.
Two great challenges that I and others face are overcoming the perceptions of others, and completely embracing and understanding our own abilities and deficits. The perceptions of others, particularly uninformed first impressions, have a tangible reality full of repercussions when it comes to social and professional opportunities. I have learned of jobs that my physical condition “didn’t look the part,” and potential relationship interests that could not see themselves with someone “that way.” It is my hope that the continued exchange of experiences and viewpoints in platforms such as this will continue to break down mental barriers that are often constructed by our physical appearances. While persons afflicted with TM and similar disorders may have compromised physical abilities, persevering through the ailment certainly develops and strengthens others’ personal attributes that will prove to be of great value to those open enough to look beyond the surface and see the whole person.
We that have experienced rare neuroimmune disorders also have to continue to take our part in informing society’s viewpoint as well. Simply stated, we are a part of society (not a subset), we often impose constricting limits on ourselves. For most, trepidation is usually associated with trying something new; yet for myself and many others with rare neuroimmune disorders, the trepidation of new challenges is often coupled with the memories of physical and mental pains of previous failures and images of current situations. The writing of this piece and thought of potentially sharing it has revealed the need and desire to eliminate a constraint that I have been putting on myself. When I began this essay, I had an impending speech to give at an athletic banquet. Thinking of the topic for the speech, and this article, the thought of not fully embracing myself once again came to the forefront. In reflection, I realized that in many aspects TM has served as a passport and an emotive bridge to the hearts and minds of many as a coach and teacher. Appreciating this reality, I concluded that denying this part of myself was in many ways not appreciating the gifts that had come along with it. As a result, part of the speech I gave included a call for one person at the banquet to help me embrace my gift as they appreciated their athletic ones, by taking a picture together, one in which I brandished my cane. I am happy to report, many pictures were taken, and I appreciate the opportunity to take them and the responsibility of sharing them.
You can watch Coach Turk’s feature on CBS Sports here.
Karl Turk
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