“You will never know how strong you are until being strong is the only choice you have.” -Bob Marley

FIAP GOLD MEDAL - Wings of Despair - LINES ADRIAN - united kingdom

Around 1986 I noticed my eyes were irritatingly dry. During a routine  eye examination with a young ophthalmologist, he asked me if I had rheumatoid arthritis or lupus in my family. Knowing the chronicity and severity of these illnesses, I became terrified and angry that he would ask such a question knowing so little about me and contrary to my general personality of avoiding confrontation, I told him so. After all, I had a one-year-old and a seven-year-old. How could he ask me something like that having no relationship with me? What happened to bedside manner and rapport? Nevertheless, he likely saw something and a seed of fear was planted.

A year later, I noticed my pinkies being numb in the middle of the night. I would have to stand up and shake my arms to resume normal circulation. At this point in my family, Sid had been on the road a lot working in sales. I was in a rhythm of being a single mom since my husband was gone most of the week. Coincidentally, if one believes in coincidences, I changed a television channel briefly and heard a woman ask a doctor, “my hands get numb at times, what could this be?” He replied, “it could be the beginning of a neurological disease.” He added, “I’m sorry.”

People have frequently asked me what my first symptoms were. Of course, these symptoms can be totally benign to most other people, but to me they were not. I have always perceived physical anomalies from a broader perspective which made Western medicine and the narrow perspective many physicians view illness, too narrow for me. In my teens I had been a voracious reader of psychology and alternative realities. In my adult life, I had either explored or participated in a few spiritual schools which brought much expansion to my physical world view. Nevertheless, fear had always been a co-traveler rendering me immobilized at inopportune times in my life. From early childhood, being afraid of my mother and then generalizing that fear to teachers and other adults, to growing up and learning to stand on my and two feet (the irony does not elude me) to ultimately learning my own value, fear has been a rigorous, ruthless teacher. I understand now that this illness became the embodiment of that fear, so that I could become it, to release it.

While visiting family in Pennsylvania, it was decided that I would see a world-class neurologist near the University of Pennsylvania. I was prepared to have an MRI and whatever scary practices I’d heard those doctors did to diagnose neurological conditions. I’d heard they stick needles into nerves which I mentioned to him. I found this doctor very comforting even after he told the that he has been known to stick a few needles into nerves. It is amazing what doctors can get away with with a little compassion. His recommendation, however, was for me to continue moving forward in my life. I suspect he could intuit my immobilization and supported me in moving through this fear. What I came to understand was there was actually no effective treatment for neurological illnesses at this point, anyway.

Despite my terror in the beginning of this process, I became completely open to internal messages. Perhaps I knew the only answers would come internally. One morning upon arising I clearly heard the words, “With the symptoms comes the Renaissance.” I was still groggy and I didn’t understand the word Renaissance so I replaced it with rebirth. With the symptoms comes rebirth. This and other internal messages I had been receiving provided unseen encouragement to continue an inner journey and an unconventional path. I immersed myself in herbalism, spiritualism/spirituality,  network chiropractics and any other discipline that expanded my internal journey. Although Western medicine didn’t seem to offer any answers, I intermittently revisited that system.

After having followed the Philadelphia neurologist’s advice to face my fears of inadequacy, which was the hardest obstacle I had ever encountered, I secured employment as a psychotherapist in the state system for nearly ten years. When I decided to leave my civil service job which was both fulfilling and deeply restrictive deciding to expand my private practice, again, terror grabbed me. Not only were about my feelings of inadequacy surfacing, but I felt that I was betraying my clients who were desperately needing me. The week I was to leave, my right thigh became numb. Nevertheless, I moved forward through my fears like walking through JellO.

Numb thigh and all, I kept moving. My private practice surged and I had more time to pursue other interests. Despite moving forward, I could not shake the unfortunate hitchhiker that continually threatened to immobilize me at the slightest hesitation. I began to pursue a passion from early in life, riding horses. During my fifties I learned to jump my horse over fences. I was doing well until I noticed that moving laterally when mucking stalls was becoming more difficult. And when my horse pulled out of his halter and I ran after him, I noticed I could not run. I went to the local walk-in clinic and presented my concerns. The doctor examined my musculature and found me extremely strong. What she didn’t realize was that I had been above baseline in strength my whole life. I admitted that I was afraid I had multiple sclerosis and asked to pursue this exploration further, but she felt no need.

In 2003, my interracial, interfaith gospel choir in New Orleans which I’d been a part of for many years decided to go on tour in Ireland to sing and speak about racism in America and sectarianism in Ireland. This deeply fulfilled my mission for bringing polarities together. While in Northern Ireland I began to limp, which was the first outwardly obvious symptom. I returned to the walk-in clinic where the doctor seemed irritated, but agreed to order an MRI. The doctor called me with the results of a normal MRI, which baffled me until I realized she had not included my spine. Why is navigating the medical so infuriating? Reluctantly, she agreed to a MRI of my spine.

When I met with her for the results, the MRI of my cervical spine revealed an anomaly at C5. She told me I had a fast-growing tumor that was, “bad” and should see a neurosurgeon immediately. For some reason, this information did not trigger fear. On some level, I knew this was not true and the neurosurgeon confirmed this belief and I was referred to a neurologist for treatment for multiple sclerosis.

I have to say that Dr. McKinley was one of the nicest, informative doctors I had met thus far. He was young and warm with a wife who was also a doctor and two beautiful children. As we got to know each other, I shared about Ireland and he shared that his family had a castle in Ireland. He enjoyed music and his family frequented the New Orleans Jazz and Heritage Festival every year. After a year of six-month checkups, I parted ways, because he refused to order a cervical MRI. He explained since my cervical lesion had healed they never return once they have healed. My neck felt unchanged and I vehemently disagree with Dr. McKinley. Once again a doctor refuses to believe me. I went back to the walk-in clinic where she ordered a cervical MRI that revealed exactly what I felt. The Western medical system was neither kind nor respectful to me. I took it personally at the time, but I believe now with progressive neurological illnesses, doctors are over their heads. They need help, really they do.

In retrospect, I believe these doctors really cared about me and did not want me to have an intractable, catastrophic illness. These were wonderful people who could have been close personal friends in other circumstances. I was devastated to find out that after Katrina, Dr. McKinley zipped himself up in a sleeping bag and threw himself off a building. Despite my horror, I wasn’t surprised to hear how considerate he was, even in his despair.

Doctors are human, aren’t they? With their human frailties like arrogance and frustration from having to diagnose patients with life-threatening illnesses, not enough scientific information and no treatment available. I used to say, “they are just mechanics and bodies are the vehicles needing repair.” In my case, we were faced with a puzzle with no solution. That is when you really find out what you’re made of.

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