I recently published a fairly blunt article, “Why I think Parkinson’s is a Soul Sucking Disease.” That article has had well in excess of 1,000 hits since December 1, 2017. I have also received numerous comments, mostly favourable, although some believe that I take an overly negative approach. I am currently working on a follow up post tentatively entitled, “How I Live with Parkinson’s, a Soul Sucking Disease.”
In the course of researching this next post, it became evident to me once again that Persons with Parkinson’s (PwP) must come to grips with their relationship to Parkinson’s if we are to face the challenges effectively. Do we accept it? Do we deny it? Is there some middle ground where our identity is not integrally related to Parkinson’s one way or the other? On October 7, 2013 I considered these very questions in a post called, Parkinson’s: Identity Crisis? Who? Me?
More than four years have passed and I remain so very much in sync with my thinking at that time that I re-post the article below as background reading for my forthcoming article, “How I Live with Parkinson’s, a Soul Sucking Disease.”
Encore post: Parkinson’s: Identity Crisis? Who? Me? (originally published October 7, 2013)
Not surprisingly, upon discovering that I have Parkinson’s, I began a process of reassessing who I am. Some might say I was having an identity crisis but I prefer to say that I was searching for the answer – with apologies to The Killers http://www.youtube.com/watch?v=RIZdjT1472Y who sing
Are we human or are we dancer?
My sign is vital and my hands are cold
And I’m on my knees looking for the answer
Are we human or are we dancer?
This song has been bouncing around in my brain for some time. It is funny what you think about when you are gardening. Only I was singing (badly out loud, but perfectly in my head) alternately: “Am I Parkinson’s or am I gardener?” Or “Am I human or am I Parkinson’s?” The third possibility, “Am I human or am I gardener?” was never really an option. Parkinson’s is part of the equation no matter how you look at it.
I am not sure how far to proceed down this road as I see a huge warning sign that says “CAUTION: Sharp Turns, Philosophy ahead!” So I will try to steer clear of homespun philosophy as much as I can (philosophers would delight in picking holes in my logic anyway,) and stick to the conundrum that Parkinson’s presented for my self-image. Oh oh, warning sign: “CAUTION: Foggy Patches, Sociology Ahead!”
Like many others I suspect, I kept my diagnosis of Parkinson’s secret from most of my work colleagues, and most of the rest of the world. I told only a very few trusted colleagues, some close friends, and my family of course. I was not yet prepared to face life with the label “Person with Parkinson’s (PwP)” stamped on my forehead. At least that was how I perceived people would perceive me. [Why am I thinking of Charles Horton Cooley’s Looking Glass Self?] Anyway, this was probably moot as, in retrospect, my tremours were certainly noticeable to anyone who was half paying attention. Still, I felt that if I admitted to having Parkinson’s it would negatively affect work relationships and cast doubt upon my capabilities and capacity to do my job.
It wasn’t until I had formally announced my retirement with a firm date, that I began to process that I really do have Parkinson’s and it would (and will continue to) influence my self-identity. By the time of my retirement dinner, I didn’t really care if anyone knew and I began to speak more openly about it, and word began to slowly “leak out.” It was neither controlled nor orderly. I lost track of who knew and who didn’t. But my self-image and identity were in a state of anomie [Damn, what is Emile Durkheim doing in here?] Who was I? And what were the expectations?
I realize that we go through life playing many parts. Oh oh, “CAUTION: Overacting Possible, English Literature ahead!” Shakespeare penned this famous monologue in As You Like it around the turn of the 17th Century.
All the world’s a stage, And all the men and women merely players: They have their exits and their entrances; And one man in his time plays many parts …
Of course I have had many roles in my life – son, brother, husband, father, uncle, academic, teacher, colleague, activist, boss, to name only a very few. The expectations for each role had to be learned and I performed some better than others. As each role unfolds, it brings me closer to the grand finale. As Shakespeare concludes
… That ends this strange eventful history, Is second childishness and mere oblivion, sans teeth, sans eyes, sans taste, sans everything.
Wow! That seems much too serious to contemplate at the moment. There can be no doubt that I will die – sometime – but I need to know the essence of my identity, and what informs that identity as I shuffle along that path.
Once my work persona began to recede and the inevitability of being a retiree crystalized in my brain, the realization that I am a PwP also took up permanent residence. At this point I actually wanted to tell everyone I met, no matter how well I knew him or her, that I have Parkinson’s. “Hello, my name is Stan and I have Parkinson’s.” Or, “Hi Sarah, haven’t seen you for awhile. You know I have Parkinson’s eh? I had to forbid myself deliberately from making it the initial and primary topic of conversation. It was taking over my consciousness while it was attempting to take over my body.
Strangely, it is a bit like your first love when you want to tell the whole world that you are in love – shout it from the rooftops as they say. Only, you can’t be in love with Parkinson’s, can you? But, when it is such an integral part of your self, a part you cannot shed (at least not at the present time,) do you have no choice but to accept that you are Parkinson’s, and to love that reality? It is the only reality you have. (Whoa, I promised there would be no homespun philosophy here.)
Many PwP perform heroic feats of human and physical endurance, or continue with productive and creative careers. They continue with a preexisting reality or create a new alternate reality. They are to be greatly admired as they raise awareness to Parkinson’s in ways that few others can. I often wonder if their self-identity is more closely tied to their pursuits or to Parkinson’s? A question for another day as I cannot answer it.
For most of us, our expectations and goals are modest but vital to the condition of our existence. We know that physical exercise and proper nutrition are correlated to well being in a Parkinson’s body. Making our bodies move in some way each day is a goal in and of itself, as is ensuring that we have proper nutrition. Maintaining an optimistic outlook, taking advantage of support groups within the Parkinson’s community, and seeking advice and treatment from an integrated team (ideally) of health and social services providers are all vital to our being able to slow the progression of this relentless disease and alleviate its symptoms. We do this ourselves, with our families and with our caregivers. It is a difficult road for most of us and we must be ‘comfortable within our own skins’ to meet the challenges.
OK, let’s cut to the chase. And I truly believe what I am about to say. Without human complicity, Parkinson’s does not diminish the human soul; it does not diminish the joys or exacerbate the sorrows that we all feel in life; and it does not break the human spirit. In short, Parkinson’s is only greater than us when we let it be greater than us. But rest assured, it is ever a part of us.
For me this means I am human (although some may question this assertion.) I am Parkinson’s, as Parkinson’s is a condition of being human. And I am gardener, mostly by choice and environment, but a case could be made, given my family history, that there is a genetic component. (You know, the apple not falling far from the tree – OK, OK, that is resorting to cliché to make a point.)
So, why did it take so many words to get to this point? Because that is precisely how many words, no more and no less, it takes to reach this conclusion.
As my father would say before he became “sans everything,” ”you get better results in the garden if you fertilize liberally with manure at the right times.
Just be thankful that I spared you a convoluted exegesis on ‘life’ as thesis, ‘Parkinson’s’ as antithesis and ‘living with Parkinson’s’ as synthesis, with apologies to Karl Marx. I also considered an examination of Id, Ego and Super ego with apologies to Sigmund Freud. Perhaps another time, eh?