Since being diagnosed with ALS a few months back, I’ve been thinking a lot about life, particularly in terms of both quantity as well as quality.
Do enough searching around the web for links about ALS and you’ll notice a few things pop up often from those who are living with it: the phrases ‘death sentence’ and ‘life sentence’ are common. In many ways, these seemingly polar opposites unite perfectly in the perfect storm that is ALS.
ALS (Amyotrophic Lateral Sclerosis) is a neurodegenerative disease which progressively destroys one’s voluntary control of their body. Essentially, the lower motor neurons (the nerve pathways that extend from the spinal cord to the various muscles of the body, allowing the brain to control them) begin to short circuit, malfunction, and die, leaving one unable to, for example, move one’s limbs, and eventually interfering with normal breathing, swallowing, speaking, etc.
Along the Pecos : Sound art collaboration by the author and Jennifer Schlesenger
Along the way, through disuse the muscles themselves begin to atrophy; effectively they freeze up and become stiff. Signs along the way include weakness, frequent muscle twitches (what the medical profession calls ‘fasciculations’), and muscle spasms/cramps. There’s no cure, and very little in the way of medical treatment to arrest/slow down the disease’s progression.
Even in patients who respond positively to the medication, the average increase in longevity is only a few months. Most treatment, instead, focuses on alleviating the worst of the symptoms in order to comfort the afflicted.
The long-term prognosis is generally not good. Average life expectancy after diagnosis varies greatly, but about half of all patients die within 3-5 years. According to the ALS Association website,
“About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.”
Quantity of Life or Quality of Life?
These raw statistics, of course, address quantity of life, not quality of life. This is where the aforementioned ‘sentences’ come in. As discussed above, the symptoms which precede death amount to a progressive disconnect between the brain and the limbs and other major muscle groups. Some ALS patients describe this as akin to being imprisoned in one’s own body.
Cognitive and sensory functions unimpaired, it’s a slow but inevitable descent into isolation. ALS sufferer (his own word) Tony Judt remarked that,
“In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one’s own deterioration.” “In effect, ALS constitutes progressive imprisonment without parole” he continued, “…[i]magine the mind’s response to the knowledge that the peculiarly humiliating helplessness of ALS is a life sentence (we speak blithely of death sentences in this connection, but actually the latter would be a relief).”
That relief is hard won, to be sure. The voluntary ending of one’s own life, whether doctor assisted or by one’s own power, is still illegal in all but a handful of countries and US states. It is currently being debated in a number of places, including the UK.
Even ALS poster boy, physicist Stephen Hawking has recently changed his stance, coming out in favor of an individual’s right to choose a dignified end. “We don’t let animals suffer, so why humans?” he said recently in an interview. Current developments in the ‘right to die’ movement can be found at the website of the World Federation of Right to Die Societies.
Western cultures, in particular, have historically had a lot to say about every stage of life and the personal rights associated with them, except for the end of life. On that stage there’s been a lot of nothing besides silence, taboo, and averted gazes.
Time to be gone
As Dudley Clendinen wrote in 2011, less than a year before dying from complications of ALS:
“Last month, an old friend brought me a recording of the greatest concert he’d ever heard, Leonard Cohen, live, in London, three years ago. It’s powerful, haunting music, by a poet, composer and singer whose life has been as tough and sinewy and loving as an old tree.
The song that transfixed me, words and music, was “Dance Me to the End of Love.” That’s the way I feel about this time. I’m dancing, spinning around, happy in the last rhythms of the life I love. When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over.
It’s time to be gone.”
Ultimately, he did not make the choice to end his own life. I really wonder about that. The whole rest of his article was about choosing to die on his own terms, and yet ultimately he didn’t…he let ‘Lou’ choose for him.
What makes a person choose whether or not to end one’s own life? It comes back to that tradeoff, I suppose, between quality vs. quantity. How one defines ‘quality of life’ and how much you value one over the other.
I wonder how I’ll deal with this question when my time comes.
Steven M. Miller
Singapore, 9 December 2013
Part One of this series is here
Documents photo: Nuttakit/Freedigitalphotos.net
Steven M. Miller is a composer, sound artist, and improviser whose work and interests intersect sound, culture, technology, and the arts. Also an avid photographer, his formal training includes music, audio recording/production, electroacoustics, and interactive media. www.stevenmmiller.net