By David Poland firstname.lastname@example.org
The Parkinson’s Thing
I cannot say enough about what Michael J. Fox has done for Parkinson’s awareness, research, and for those suffering with the disease.
But there is a distinction between what Mr. Fox has been going through (Muhammad Ali, too) and what was the case with Robin Williams, assuming there was a recent diagnosis, as suggested by his wife’s statement.
According to the National Parkinson’s Foundation, both Fox and Ali suffer from what they call Young Onset Parkinson’s. This is when people are diagnosed before 50. Unique to this diagnosis are:
* A slower disease progression
* An increased rate of dystonia (sustained abnormal postures, such as turning in or arching of the foot and toes) at onset and during treatment
* A lower rate of dementia
* An increased rate of dyskinesias in response to L-DOPA treatment.
* As is the case with older-onset Parkinson’s disease, the speed and severity of the progression of Young-Onset Parkinson’s disease can vary greatly among individuals.
The average age at which a Parkinson’s diagnosis is made is 62. Robin Williams was 63.
I went down the Parkinson’s track about 30 years ago. My godfather, for whom my son is middle-named, was diagnosed at around 60. He was wealthy… well cared for… family quickly active in the Parkinson’s community. One of the smartest men I have known. I wasn’t there every day. Not close. I lived in other cities as he battled through that last decade of his life.
I remember the shuffle. I remember the bursts in which I could see “him” inside the slowing body. I made the trips to the men’s room, when that was still possible, and had the conversations with his wife and the increasing issue that bathing and all other bathroom activities became. I remember the increasing lack of frequency of those moments where “he” showed in the conversation. The increasing frustration… belligerence even.
I watched, from some distance, a person who I loved almost like a parent, go slowly, block by block, gesture by gesture, loss by loss.
And I saw a man’s wife, desperate to care for him as she committed to back when marriage was a more solemn thing for more of the population, literally killing herself to do right by this man. Would she have developed dementia practically on top of his passing had she not gone through the stress of this decade? No one can ever know. But I think it contributed. Whatever propensities she had were certainly not as closely examined and cared for while her focus was all outside of herself.
And I have watched the process again since. And I have known others who lived through this wholly undeserved horror.
Am I condoning suicide as a choice for those diagnosed with Parkinson’s or other diseases primarily of the over-60s that are painfully debilitating? Not as broadly as that.
But I think of how I would feel. I think about my father, who at 80 decided that his medical challenges so overwhelmed his quality of life that he allowed himself to die without medical assistance (except pain meds) by way of allowing his failed kidneys to kill him over the course of a week or so… painless, but fatal.
And I think of a man like Robin Williams, who had such power over his body and his mind, considering a future with diminishing power. I think of what it must be like to imagine your legacy being overwhelmed by your illness.
I think of Roger Ebert, who lost so much so fast, but who still had the power to communicate in a way that really was his most comfortable form. He made the most of it… but it was a gift, really. Not being able to speak or eat or travel easily was a real and profound loss. But he could still be Roger.
Could Robin Williams be Robin Williams with his motor cut by half, much less with it cut by 90%? And when, in that inevitable deterioration, would he lose control… not just of his body and his mind, but the ability to pull the plug when he, somewhere in his soul, decided enough was enough.
I have been avoiding writing about Robin Williams for the last few days because I felt like too many people were writing with too little actual information, and with too little insight into what the man’s pain really was. There have been some really beautiful pieces. But a lot of click bait and wild hypotheses.
And this morning, Robin Williams’ death, which could well have been fueled by many issues aside from Parkinson’s, became a little less blurry to me. I am fortunate not to suffer from depression. I am not famous. I have not earned enormous wealth, nor do I carry the pressures of it.
But facing inevitable, sped-up, profound deterioration. That is not treatable. That is not something to work through. That is, in my view, a door that you walk through consciously, knowing that you may soon lose consciousness or the power to express yourself.
Remember, Robin Williams watched Richard Pryor battle with Multiple Sclerosis for almost 20 years before Pryor died. The last six years of his life, Pryor didn’t perform.
(Added, 3:28p) As someone smartly pointed out, Williams also spent years watching his close friend Christopher Reeves deal with a catastrophic injury and the repercussions in his life.
Anyway… there is probably nothing that could happen to me physically that I fear more than constant, harsh, inevitable deterioration. (The next 30 years of my life will include a lot of deterioration. But it will hopefully be slow enough and incremental enough that I can make the adjustments as it comes… until I can’t.) So this announcement not only hit my personal history button, but my intimate fear button. And I wanted to be as clear as I could… more than 140 characters clear.
Getting old ain’t for sissies. And even horrible, painful choices can be brave.