My Pity Party Is Cancelled Indefinitely
“She put me through some changes, Lord, sort of like a Waring blender. Poor, poor, pitiful me. Poor, poor, pitiful me.” –Warren Zevon
The other day while I was ruminating about the burdens that ALS imposes, a call of nature provided an intervention of sorts. An urge to evacuate my bladder unexpectedly interrupted my self-pity party. As I reached for my tableside urinal, the inspiring, simple brilliance of its utility mesmerized me. A belated thanks to Delmas E. Collins who invented it in 1970, anticipating decades earlier my need today.
The urinal “eureka” moment led to a less self-absorbed perspective. Sure, I can lament my current circumstance. Many would acknowledge that I would be justified in doing so. However, the fact is that I live in the “friendliest” ALS era ever. I shudder to think of an existence generations or centuries before.
Imagine having ALS when it was not yet defined as a disease, much less understood. As the symptoms manifested in folks around you, and in you, one might consider demonic possession or retribution from God to be the cause. Perhaps contagion would be suspected. These conclusions could lead to societal ostracizing. As Patrick Corrigan asserts, “The lives of people with disease and disability are harmed not only by their conditions but by public response to these conditions in the form of stigma and discrimination.”
It wasn’t until the 19th century that ALS was isolated as a syndrome. Sir Charles Bell first recognized progressive muscular atrophy during the 1820s. Piggybacking on the work of Bell, Jean-Martin Charcot, in 1874, not only described the condition and its pathology but also named it “amyotrophic lateral sclerosis” (no muscle nourishment in the lateral area of the spinal cord, leading to motor neuron death) and separated it from other neurological conditions.
Unfortunately, in 1887, Charcot dramatically mischaracterized science’s grasp on ALS by remarking that, “The diagnosis as well as the anatomy and physiology of the condition amyotrophic lateral sclerosis is one of the most completely understood conditions in the realm of clinical neurology.”
As the early medical community floundered in its attempt to properly gauge the enormity of arresting ALS, those stricken were left adrift in turbulent waters, without both paddle and life preserver. In particular, when one could no longer self-ambulate or their diaphragm muscles began to compromise, the grim reaper likely would wet its chops. Then technology interceded.
In 1987, continuous positive airway pressure (CPAP) was combined with a nasal mask, yielding what is now known as “modern” noninvasive mechanical ventilation. In 1992, the bilevel positive airway pressure ventilator (BiPAP), designed for the treatment of patients who could not tolerate the high pressures of CPAP, was introduced into the market. This made ventilation assistance possible for those who suffer from a neurological disorder that disturbs breathing.
It is highly likely that had I been born when my father was, the inability to rely on these relatively recently introduced care aides would have cut my post-diagnosis lifespan by greater than half. If I was of my grandfather’s vintage, it would have shrunk even more. Living today also affords me communication advantages, ranging from e-readers to electronic eye gaze communication options. Plus, I always have the aforementioned “pot to piss in” at the ready.
There is an odd dynamic in play for disability assistive equipment. Unless one is forced to avail oneself of enabling devices, the magic of the availability often goes unnoticed. In my case, too often I take that magic for granted. Shame on me.
“Let us keep looking in spite of everything. Let us keep searching. It is indeed the best method of finding, and perhaps thanks to our efforts, the verdict we will give such a patient tomorrow will not be the same we must give this patient today.” –Jean-Martin Charcot
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