In the same 24-hour period in 2014, I began reading about neurological disorders in medical school, watched the first of many videos of people pouring frigid water over their heads and was informed that my aunt had been diagnosed with Amyotrophic Lateral Sclerosis (ALS) – the irony was implausible. The old adage that “knowledge is power” was useless here, because no matter how informed I made myself, no matter how keen I was in understanding the disease, no matter how much I studied this condition, I was powerless to do anything about it. Not only was I powerless, but any health professional who saw my aunt was powerless as well.
Given my propinquity with ALS in such a short period of time I felt it fitting to participate in the now famed ALS Ice Bucket Challenge. I recruited some friends, bought a large container, turned on the taps and emptied the ice cube trays. We pledged to donate to ALS research, informed the public of the limited knowledge around the disease, and encouraged others to participate to raise awareness. As the water poured from the bucket and over our heads I began to contemplate the reasons for such an exercise. Perhaps the sheer novelty of this idea was enough to raise awareness of such a debilitating disease, a disease that had now begun to slowly overtake my aunt’s body. The parallels ran deeper than novelty, however. As awareness of this disease spread through the cyberspace of social media, the pathology of this disease spread through my aunt, both at unimaginable rates.
The idea of freezing overwhelmed me. The concept that as we were drenched in a glacial medium, for a fraction of a second, we may have experienced what an ALS patient endures everyday. We may have been somatically tuned in to the sensations my aunt experienced at that very moment; that feeling of becoming entrapped in a body that is slowly freezing. A body that, despite every effort from the mind, is incapable of movement, is incapable of performing even the smallest of tasks. The difference was that our numbness, our frozen-state and immobility were transient. That of my aunt was not. While we would eventually thaw, she would continue to freeze until the inevitable point of solidity.
The frigidity of ALS extends deeper than this thought. Normally the flow of a patient within the healthcare system follows a logical progression from presentation to diagnosis to management and finally to treatment. ALS halts this process early. Frozen in the progression, ALS patients do not move past management. Treatment is non-existent and escape is impossible. As my aunt’s musculature slowly came to a halt, so did her progression through “the system.” Comfort management was the primary goal; climbing the mountain to treatment was not contemplated because that was a summit that did not exist.
And so, that time had come. On a cold and freezing January day my aunt was laid to rest. I could not help but notice the temperature outside as the notion of freezing had occupied many of my correlates to the ailment that afflicted her. Despite the freezing cold temperature that day, a thaw had taken place. A thaw of that frozen look of fear that had occupied my aunt, a thaw of the solidity that had overtaken the emotions of my family and a thaw of her body, that for only a short time, had been occupied by a frozen infirmity. As the minister spoke of the kind, gentle, and quiet person she was, a sense of warmth occupied the congregation. A person that had touched so many, had warmed so many hearts, and had instilled a sense of cordiality among everyone in her company, was laid to rest but would not be forgotten.
Appreciation for the impact of a disease does not come easily. I believe truly understanding a disease is best achieved through patient interaction. Textbooks, lectures, lab reports and assignments are all meant to instill a sense of knowledge around a disease; to demonstrate the pathophysiology and disease processes that take place in the body. A simple bucket of ice water started my journey toward understanding ALS like no textbook ever could. It is not the neuronal-muscle junction breakdown, the slowing numbness, or the intact persona that define ALS for me. It is defined by the seasonality of the disease, the slow progression into a winter, a frigid state that ends in peace where a life is celebrated and the warmth of a personality shines through.