Fernando Kaskais posted: " The author visiting the Himalayan foothills of northern India in 2004 | Photo courtesy John Wagner A writer and practitioner reflects on her terminal illness. By Teri Dillion Out of nowhere and interrupting an otherwise beautiful May morning, I "
Out of nowhere and interrupting an otherwise beautiful May morning, I just so happened to hit the jackpot of drama, the grand slam of misfortune, a condition I'd soon learn is sometimes spoken of in medical circles as "the worst possible thing." I was slapped with three uppercase initials—ALS—that signified I was now victim to a rare, quickly debilitating neurological disease. It was the kind of disease which results in total paralysis—including the loss of one's voice and an assured countdown to respiratory failure—within a few years for nearly all who are diagnosed with it.
Of course, I hadn't seen any of it coming. The day before the diagnosis, I was so confident in the promising course of my future that increasing life satisfaction felt almost fated. In 2016, I was thirty-five and at a beautiful resting point, relaxing into a well-curated adulthood, seemingly removed from having to reckon with the threat of death. I was growing accustomed to feeling competent and in control.
Call it chance, or destiny, or the cunning cosmos wanting to poke a hole in my existential hubris, but reality had other plans for my precious life. I was being schooled in the ancient lesson that most of us will learn eventually: that certain blessings are safe to take for granted until the day they are suddenly, inexplicably, shockingly not.
The morning carried a warm spring breeze that seemed to herald a general cheeriness from everyone, chattering squirrels included. The route to my appointment with a neurologist had me weaving my bike along the Boulder Creek path around joggers, parents with strollers, and skateboarders. Wildflowers sprouted up along the edges of the pavement in obstinate declaration.
There was, though, one thing tugging at the corners of my attention in an increasingly troubling manner. It began the previous fall, when I noticed myself fumbling while dressing. Bra straps and buttons became progressively more difficult to navigate; it was as if my fingers had stopped cooperating with my direction. At first it just seemed weird and only faintly worrisome. Is it my imagination, or am I getting clumsy? Is this really a thing? But over the months these unexplained symptoms slowly progressed to include my wrist, making cooking, doing dishes, and typing a little more challenging.
After parking my bike and checking in at the front desk, I was promptly invited down the hall to the doctor. He asked me to sit. He looked pained.
Taking a deep breath, he said, "I'm afraid to tell you that I believe you have a condition of amyotrophic lateral sclerosis." My heart pounded. My stomach dropped. I stared, waiting for him to explain. "Are you familiar with it? It's also known as Lou Gehrig's disease."
Something within became a little thick and fuzzy. It was as if a blanket suddenly wrapped around my brain, cushioning me from extra input. My tears came despite my wanting to hide them. "I'm sorry," I said, knowing they might make him uncomfortable. He responded with a gentle "Of course," as if he were surprised I was holding it together at all.
I asked if the illness shortens people's lives. He nodded but said nothing more. Not really knowing what else to say but desperate for some hope, I asked, "Should I eat in some special way?" He shook his head and said it wouldn't matter. At this point I realized he was no longer looking me in the eye.
I then managed to stumble down the hall and walked outside until I found a secluded spot along the creek. It was there, sitting in the damp grass under the dappled morning light, that I first learned everything about my new diagnosis the doctor had not been willing to tell me.
As I scrolled through the search results on my phone, I read that ALS has no known cause and no cure. Treatment is practically non-existent and really designed only for comfort. It's a process of progressive, inevitable motor neuron death, often starting in a limb and then quickly spreading to devour one's entire body. The mind is rarely affected. Late-stage patients would need a feeding tube and a breathing machine. Most live between two and five years after diagnosis. In that time, they become quadriplegic with no voice, eventually dying of suffocation once their lungs lose their strength. The death rate is 100%.
Icalled my husband, John, and broke the news to him. Stunned, he said he would cancel his clients and meet me in the park near his work. On my way over, I noted all the innocent people whose lives hadn't just been pulled from under them...
No comments:
Post a Comment