Parkinson’s scared me more than cancer. Those words bored through my thinking in late February 2020 and remain persistent now. Unfortunately, nearly every terminal patient who’s taken a stoic stance (remaining in control), there comes the point in time during the disease when you lose control. I remember watching Ted Koppel’s Nightline program when Morris Schwartz (Tuesdays with Morrie) talked to Nightline host Ted Koppel. “Well, Ted, one day soon, someone’s gonna have to wipe my ass. It’s the ultimate sign of dependency. Someone wiping your bottom. But I’m working on it.”
Control. I thought of the word ‘control’ when my Neurologist informed me I moved from Parkinson’s Stage 1 to Parkinson’s Stage 2. In Stage 2, Symptoms start getting worse. Tremor, rigidity, and other movement symptoms affect both sides of the body. One can remain independent, but daily tasks become more difficult. And that’s where I’m at: Life is more difficult, more complicated, and more painful in the ass.
In eighteen months, life became more complicated. In the past 18 months, tremors moved from a twitch in the left-hand thumb to tremors in both hands. Internal tremors now impact both forearms, thigh muscles of both legs, and at times, my legs feel like marble columns. Stage 3 arrives in March 2023, when significant disease progression (should the current timeline remain valid). Symptoms are the same as those in Stage 2, but movements become slower overall, falling is common, and Parkinson’s significantly affects daily tasks. Finally, stage 4 occurs 36 months from now and becomes the point dependency. At Stage 4, I ultimately lose control.
When I think about it, losing control is the beginning of a more formal relationship with death. My Neurologist stated, “We can control a lot of this by increasing your levels of Carbidopa-Levodopa.” My Nero’s a nice person, but most clinicians treat only the disease. Rarely does the medical system treat the person. In healthcare, patients are seldom the focus. People are ancillary. Within that system, patients lose ‘control’ and face the scariest thing about death: Losing control and experiencing unwanted suffering. It’s experiencing loss of humanity.
I am not naïve. The caregiver’s role is to relieve suffering. Yet, there is only so much caregivers can do. As my father lost control, my mother spent hours recalculating how to best eliminate his suffering. “Ultimately, Mom, the body wins,” I said during a late-night cup of tea. “No matter how many pills you toss at it; regardless of the technology used, the body wins.” When reflecting upon those who’ve passed before me, and when I think of my father’s medical treatment, I realize there’s a difference between necessary and unnecessary suffering. In my definition of ‘control,’ I want to remain independent. I want to choose what’s best for me. I wish to remain independent. As Stephen Hawking wrote in 2015, “I want to die on my terms.”
My fear of losing control is giving way to a medical system that dictates one must proceed through all five Parkinson’s stages and then die. To believe that one must endure endless medical treatments only to acknowledge Parkinson’s to take me seems idiotic. Of the many medical interventions healthcare desires to implement and bill, I wonder if postponing death by months or years adds tangible value to living? For instance, my Neuro wants to perform a DaTscan. A DaTscan is a drug that is injected into the bloodstream to assess dopamine levels that control movement. “Is this test necessary,” I quizzed. Sarcastically I was saying, “Shit. I have been on carbidopa-levodopa for nearly nineteen months; I was just diagnosed as being in Parkinson’s Stage 2, but let’s perform a scan to assess my dopamine levels.” Sure, a DaTscan study might differentiate Parkinsonian syndrome from essential tremor, but again, if clinicians thought I didn’t have Parkinson’s, why prescribe Parkinson’s medication over the past eighteen months? And the coup de grâce? In the pressure of medical clinicians, I surrendered to medical technology. “Ok,” I affirmed. I lost ‘control.’
Hospitals are not an ideal place to die. When a death occurs, medical crews will whisk the body away. The patient’s residence will be sanitized, listed for sale, or administrated per the estate, and it will feel as though that person never really existed. Working in the medical industry for the past sixteen years, I’ve seen many people who were ready to die. This ‘readiness’ was not because they had found some final peace or transcendence. Instead, they realized how repulsive their life had become. At some point, they awoke and found that the same medical system once entrusted with a cure had control of their every waking moment. And by understanding they had lost ‘control,’ they began to retake ‘control.’
My personal goal is set upon well-being. Therefore, I want my life, health, and healthcare to be more about making life more wonderful than less horrible. Don’t get me wrong. I don’t want to dismiss the context of death. Dying is hard. There are numerous unmovable hills and valleys of sorrow, and at some point, we’ll all kneel before the angel of death. Instead, I am asking that each of us take control and allow life to play itself out as best as possible. If we cannot solve death, maybe we should redesign life. Take control and live in beauty and harmony versus the ‘glass castle’ (tall corporate building made of glass) of the corporate world.