As new Parkinson’s symptoms peel back any notion that my body can live in some delicate truce, I continue to reassess what I can and cannot do. For example, an Arizona State University study of Muhammad Ali’s public speaking revealed Ali exhibited symptoms of slowed and slurred speech several years before diagnosis. Researchers determined that Ali’s syllables per second slowed by 26 percent over thirteen years. But slurred speech was never my symptom, at least at this moment.
This week, left-hand tremor has become more prominent with the hands at the sides. A ‘Keyesence Detection’ test revealed, “The person has characteristics in their typing similar to people with early to mild Parkinson’s Disease. Tremor and movement exceeded normal ranges. An asymmetrical tremor of 4-6 Hz suggests Parkinson’s Tremor.’ But I already knew this. A tremor while typing has been the bane of my existence for several years. Tremor with the hand at my side has not. That’s new. That means Parkinson’s has progressed, even if ever so slightly.
As Parkinson’s slowly grinds away, I am convinced that a long life and quick death is unlikely to occur. And these two combatants are unlikely to be peaceful sides of God’s grace until death. Long-life is unlikely to transition to quick death peacefully. More than likely, the physical body functions unimpacted by Parkinson’s are likely to wildly bitch about the biological processes that have surrendered. And therein comes the pain part. “Ah, better today, my friend. But beware, your foot is likely bitch tomorrow.” It’s just that most versions of ‘quick death’ will not torture you for the next five years. For many, ‘quick death’ will not be a friend. Therefore, they’ll beg for ’long life.’
However, the benefit of ’long life’ is no bargain either. My neuro stared me in the face and said, “Well, go out and live, enjoy as normal a life as possible.” That’s like saying, “Don’t worry about two years down the road when loss of balance and slowness of movements significantly impair activities. And oh, falling. Yeah, falling will become more common.” More time is rarely the reward.
In my experience, an additional couple of years (i.e., time) rarely goes the way people imagine—my neuro’s words to ‘go out and live’ is a fantasy of resuming a life uninterrupted. In 2019, I was given only two years of quality life. After that conversation, I spent the next six months determining what to do with it. I found myself waiting for some Devine inspiration. Life remained interrupted, and the following years bore little resemblance to anything I lived. Intuitively, I knew life would never be lived before diagnosis. And intuitively (sorry, a repeat), I tend to look over my shoulder at the shadow of certainty (death) that follows. Yeah, no one else sees it, but I do.
Living more a few more years means more time to live dying. It means more Parkinson’s symptoms, more drugs, more drugs for the side effects from the drugs already injected, more weakness, diminishment, less dependence, and an increased chance someone will have to wipe my ass. I fear that Parkinson’s will force me to live in a way that I openly stated I would hate. Like my father before, I fear being relegated to an assisted living facility with little life, left to watch old 1960s television shows cemented into a wheelchair I no longer can rise. Instead, life will become an endurance test where only meditation mantras could free me from the enslavement of earthly bonds if I’m mentally aware of meditating.
Sure the nursing facility staff will quiz me about ‘quality of life,’ but none will ask about the quality of death. None will advocate for me. I don’t want to experience Parkinson’s dementia. I neither wish for around-the-clock nursing care nor am I fond of hallucinations or delusions. The problem is that answering the quality of death questions means one has to answer complex questions. I said I didn’t want to live with dementia or hallucinations when the time came. But when would that be? What would that look like? As Stephen Jenkinson queried, I don’t mind dying, but do I have to be there when it occurs?
Throughout my years in the medical world, I’ve seen numerous families defend their decisions believing that God will take their loved one in His time. Until then, they believe their loved ones must remain alive. But unfortunately, the harsh truth is that we have the technical capacity to alter the course of a person’s time of death. So much so that God’s will has become a variable window. And sadly, God’s will has become indistinguishable from that of the family or that of the health care system.
So therein lay the question all will ask some day: What is a quality death? God only knows.