The day-in-day-out process of Parkinson’s decline is slow and methodical. Parkinson’s is a slow progressive pain in the behind. The stage at which the symptoms appear, progress, and develop is tedious. Last week, brain fog. This week, not so much. However, this week, my hands’ fumble. Next week, maybe they will not.
My case manager got to the heart of the situation, “As you experience your body declining, ‘What are your thoughts?'”
“It’s confirmation my body is dying.”
Briefly looking out the window of her office, I had no broader thought. I was factual. I have not and grieved for my declining body. I have not gotten overly emotional over problems such as climbing one flight of stairs produces neck and shoulder pain so fierce it crushes any thought of ascending a second. Neither do I belabor the fact that walking is such a monumental endeavor that straying outside of the range of home or a public bench becomes terrifying.
“But there’s a greater issue. No?”
“Huh?” I mumbled after being startled.
“There’s a greater issue, isn’t there?”
“And that is?”
Looking downward in resignation, “It’s a fact I that I could no longer hide my condition.”
If there were a motto that trickled through my life, it would be those around me saying, “Suck it up.” As a result, since age 40 and upward, whatever my body did internally, stayed internally. Acknowledging any tidbit, any existence of dilapidation, or any form of weakness, I would be classified differently. I would lose myself, my humanity, and possibly all I ever am and be forced to live according to others’ opinions.
I remember having to discuss my tumor diagnosis with my brother as he drove on the highway (see the post ‘Why‘). I felt forced, and that somehow, I was interrupting his day. Rather than waiting for a suitable time and listening to my diagnosis, fears, and needs, he demanded I obtain a second (and possibly third) opinion, complete all required medical tests, and get back to him. He never called again, and I never updated him.
Hiding or masking fit my life well. I never summoned my parents. And outside of a few close friends, I told no one. Part of me hesitates because watching others absorb the knowledge of impending death can be extremely difficult. Crueler yet, what if telling someone I am dying receives a half-assed summarily executed dismissal, “Yeah. Got it. You know, I think the Bears on?” Even now, I debate which response would be worse. So, I planned my goodbye.
I spent the last two months of 2020 preparing my goodbye. Except for the funeral, every ounce of energy went into the planning. I copied documents, my will, advanced medical directives, passwords to accounts, home insurance, car insurance, Social Security information, last letters, etc., etc., into binders, secured them in a safe, with a list of what to do when. Even today, I wonder if I am living a ‘good death’ or romanticized dreaming.
In the film The Last Samurai, Katsumoto debates a ‘good death.’ To Katsumoto, dying in battle was a great honor. As such, passing on the battlefield would be a good death, for it is the greatest achievement a warrior could accomplish. Extrapolating, would my death be good if I choose medicinal comfort up to and including death? Or is death only good if one battles it out until the end, even if it meant gasping for life via a respirator?
A year before his death at 83, Luis Buñuel, filmmaker, surrealist, moralist, and revolutionary, thought a lot about death. “I’m not afraid of death,” Buñuel stated. “I’m afraid of dying alone in a hotel room, with my bags open and a shooting script on the night table. I must know whose fingers will close my eyes.”
Having been in the medical industry all these years, I know 85% of the people reading this will die rather slowly, with one organ after another failing. With each failure, clinicians will try to compensate, but the patient will fail to return to the previous baseline of failure. In my entry Quicksand, I mentioned Shane Falco, a character from the film The Replacements who summarized a somewhat similar life analogy. I overlaid my thoughts on how life tends to end.
“You’re playing (living life), and you think everything is going fine. Then one thing (medical problem) goes wrong. And then another. And another. You try to fight back (medical treatment), but the harder you fight, the deeper you sink. Until you can’t move … you can’t breathe … because you’re in over your head. Like quicksand.”
In the up-and-down death of organ failure, it is hard to identify ‘finality.’ Therefore, doctors continually bombard the body with futile rounds of treatment. Still, at some point, the ship (the patient) sinks quickly, usually in weeks.
I have met patients who have assumed Katsumoto’s warlike attitude, “I’m going to beat this thing.” What follows is a litany of appointments, MRIs, CAT scans, examinations, blood samples, and treatments, all of which falsely projects a veneer of the patient bravely duking it out (i.e., creating the ‘good death’). Clinicians often shape daily schedules, and the patients lose their humanity and their ability to participate in activities that once brought joy. In the end, too many lose their lives, but not their life.
I commonly hear the statement that Patient A, B, C lost “his or her battle,” as if one ‘loses’ only if they battled. But know this, I suffer the isolation that comes with diagnosis. I have lived in fear of making a wrong decision. Until you are in my shoes (or ‘their shoes’), it is hard to imagine the onslaught of daily life challenges. And like my brother, many fail to fully credit those for their journey, whether they agree or not.
Let us declare that there is no good death. There’s just death. Let us not announce losers or winners. We are not intended to spectacles of amusement, like Gladiators of days-gone-by. We face mortality face on, some with clear eyes, some with courage, and some in excruciating pain. I can choose whom to tell or no. I can also choose silence. And let me correct any misconceptions now. Silence is not shame. Silence is my sword against ignorance.
Like everyone, I will choose to die on my terms, pick death without extended treatment, or battle unto the end. I can choose to spend whatever remaining time doing what I wish. I can choose to say “no more”— no more pain, whether emotionally or physically.
But rest assured, my silence is not hiding.