Guest Author
By Githa Singh
Little did I anticipate it would be the last visit with Dr. Veerasamy, my neurologist.
“I have no answers for you. Your symptoms do not fit a clinical pattern to make a conclusive diagnosis. MRI of the brain and the spine are normal. The diagnosis you came up with when we began a year ago does not fit any longer.”
It was the goading of my two adult daughters (in their early thirties) that forced me to be assessed by a doctor. Dr. Veerasamy met the qualifications following my research back in August of 2022. I sat upright in my chair facing him now and doubts crept in on this third visit.
“I have discussed your case with my fellows, and I would like you to see Dr. Juan. The nurse will make your appointment with him.”
With proper body mechanics I stood up slowly. The roiling in my brain added more rubber bands to my right leg. The spastic gait could not be controlled as I limped out of his treatment room.
The one-page synopsis of my medical history and the old and new symptoms, painstakingly typed out the night before, trembled finely under Dr. Juan’s nose on that day in October of 2022.
“Take it away,” he commanded with his eyes closed and his right index finger on his lip, like a Sherlock Holmes. He paced the floor as he repeated his questions. I was an actor in this drama and marvelously stuck to my script with concise answers. Together we grew excited, our voices raised, our energies fused, the neurologist and physical therapist, and…
“You have PLS,” he announced as his eyes flew open, his fingers snapped, and his feet grew still. “I’m sorry.” His voice was tender, our eyes held, and a smile spread to my hot cheeks.
Life’s ironies swept through my mind like a wind gathering dust and I, just another fleck caught up in its swirl. His voice circled the rim of the dust cloud. “Fortunately, you have a normal life span, unlike those with ALS who have a five-year lifespan or less once diagnosed.”
“And the quality of my life?” The dust settled and with a thud, I re-entered my physical therapist world.
“There are assistive devices as you need them,” he intoned.
“Yes,” my lips formed as walkers, bed rails and wheelchairs trundled across my vision. But I was invincible, I was never going to need them in my lifetime. My job was to heal others and be compassionate to others; such was the joy and fulfillment for me. That was never to end.
My thunderous volume of neurological conditions opened to the page on ALS. The remote memory (perhaps twenty years ago) of an emaciated little man lost in a power chair churned in my mind. He attended our therapy clinic. I had helped the occupational therapist shape the splints that he required to prevent more deformity in his hands. I could feel again the floppiness of his wasted arms. The vision returned of his lifeless, emaciated legs. I could hear his silent voice through his active eyes. Yet, as I sat staring at the open page, I could not recall the pathos I felt then for his dire condition.
Medical conditions, bent backs, and stumbling patients crossed my path for decades. Passionate about my profession and eager to provide the best knowledge and treatment I could offer to heal every patient, I constantly educated myself. It was the arrogance of that self-education that led to the smug self-diagnosis of Conversion disorder. The research papers were printed, neatly carried in a folder and grandly handed to Dr. Veerasamy.
I must have convinced him that he concurred. Hadn’t I suffered PTSD in my marriage? Did I not believe oh so self-righteously that I had the inner strength to bear all the abuse in the marriage? Hadn’t my body finally revolted to challenge my stoic mind? The stroke-like walk, the stumbling, the occasional falls at moments of crisis, surely my mind commanded my body to act out! Conversion disorder!
ALS: a rare and little-known disease, the literature says. Amyotrophic Lateral Sclerosis or commonly remembered as Lou Gehrig’s disease. Lou Gehrig, the baseball player, whose fame brought ALS to the consciousness of the public, more so after his demise. A fatal type of motor neuron disease with degeneration of nerve cells in the brain and spinal cord affecting those nerves that control voluntary muscles in the body. Without nourishment to these muscles, they waste away causing progressive weakness and paralysis. Movement, balance, and coordination are challenges that lead to paralysis. Difficulties arise with swallowing, speaking, and breathing.
“To date, there is no cure,” Dr. Juan had said. Draw up your will and say your goodbyes, they say. Your intact mind watches in horror at the devastation of what you once were.
Information on Google, YouTube, and textbooks filled the channels in my brain over the next few days. The nights were questing and wakeful. Courage surfaced. Over the phone line, my daughters received the news. A month later, my friends were enlightened too. A year later, a new neurologist took over my case and announced, “You have signs of ALS.”
Githa Singh was a Physical Therapist who wished to heal people until ALS told her she’s done enough healing for now. She gardens, learns and writes.
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