The Artist in the Mirror

In my last post, we discussed the impact that dopamine has on the artistic process in those who have Parkinson’s Disease. It seems that Artists with Parkinson’s have arrived.

Today, we will discuss a couple of nagging symptoms but first let’s talk about labels. I have never felt comfortable with the proper name of my ailment or what to call people who have it. I have heard people use labels like Parkinson’s Patients, People with Parkinson’s, or worse yet, Parkies. None of these labels describe the condition other than through the vague stereotypes that society associates with the name of the physician who observed the disorder.

James Parkinson didn’t suffer from the disease; he just observed people who were gimpy or shaky. Since his time the number of symptoms have exploded and even though there are over 40 different varieties of symptoms, we are not like Heinz ketchup. We don’t all pour the same way. Why not call it what it is - a dopamine deficiency disorder. Maybe that way, a talented artist with Parkinson’s will be better known as a talented artist in her own right.

The counterpoint is that a talented artist with Parkinson’s draws much needed attention to the disorder whose occurrence continues to increase especially for Southern and Mid-Western males. There may be something to the suspected link between pesticide exposure and Parkinson’s. That thought brings back memories of using Sevin Dust to de-flea our dogs when I was young. Apparently, my mother was right; dogs might well be the death of me. Now on to the subject at hand.

Facial masking, along with low voice quality are two of the more pernicious symptoms of Parkinson’s. The combination of both symptoms makes communication difficult. Just ask any barista who has taken my order in a drive-through coffee shop.

I was a talker when I was little. During my first year of elementary school, I was eventually forced to sit by myself in class due to my incessant chattering. This solitary treatment came after the teacher notes to my parents, principal phone calls to my parents, and the never-miss-an-opportunity-to-whip-your-child punishment by my parents failed to quiet me down.

I complain now, but in all truth I deserved it. I was chatty and loudly sociable probably because I had not gone to kindergarten. First grade was my first time networking with my age group and I had a lot to say.

Fifty-two years later, I still have a lot to say, but I have learned that Parkinson’s is the silent silencer.

Parkinson’s is progressive, so I compare, compare, and compare. I compare photos of myself from five years ago to my image in a mirror and notice the loss of muscle movements that control my facial expressions.

I compare recordings that I made of my voice three years ago to current recordings of my readings of Seamus Heaney’s poetry (Lustral Sonnet and The Skylight being my favorites that you may read for yourself below) and notice the drop in loudness, inflection, and tone.

I compare videos of myself giving speeches from my political days to the almost-silent-these-days and confirm that my version of Parkinson’s grinds silent but exceedingly fine.

Facial masking deceives both me as the person with Parkinson’s and the person with whom I am trying to communicate. Having no control over the masking and unaware that I have a negative facial expression, I may come across as mean or rude to others when I am actually having a good day.

Throw in voice quality issues and others will think that I am belligerent. Throw in some gait issues and I will be thought of as a belligerent drunk. Throw in a traffic stop with an impatient cop and I will be arrested on suspicion of driving while impaired. Sometimes Parkinson’s life resembles a P. G. Wodehouse story (The Truth About George) or Monty Python bit (any skit featuring speech impediments or silly walks). Other times, Parkinson’s distorts my reality as if it were reflected in a fun house mirror.

I have really come to dislike mirrors. I much prefer the vision that I have of myself before the diagnosis.

Sometimes mirrors catch me by surprise, but they don’t reflect the surprise that I feel inside myself. The surprise that I am not smiling even though I am happy. The more I try to smile, the more I seem to frown.

The surprise of thinking that I just caught a glimpse of my father’s face. A face that became more inscrutable as he neared the end. The later half of his life a struggle endured through misdiagnosis followed by a misapplied medication regimen that only aggravated his Parkinson’s symptoms. The doctors thought his symptoms were all in his head but they were wrong. The symptoms were all in his brain and written on his face.

What if mirrors reflect what could be?

The Higgs Chair of Theoretical Physics at the University of Edinburgh recently theorized that a mirror universe exists parallel to ours where time runs backwards. I don’t pretend to understand theoretical physics but his bold assertion brought to mind Hamlet’s advice to a group of actors that the purpose of acting is “to hold as twere the mirror up to nature: to show virtue her feature, scorn her own image, and the very age and body of the time his form and pressure.”

Can we trust Hamlet’s or any mirror “to show virtue her feature” when diseases like Parkinson’s mask the face of the afflicted? There is no virtue in appearing to be mean or even worse, indifferent.

Acting like I don’t have Parkinson’s has been the major artistic effort of my life even exceeding that of acting like a political candidate. If all the world’s a stage and Parkinson’s the play, then judging from the mask that I have been given, I must be at the beginning of Act III.

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The Skylight

You were the one for skylights, I opposed Cutting into the seasoned tongue-and-groove Of pitch pine. I liked it low and closed,
Its claustrophobic, nest-up-in-the-roof
Effect, I liked the snuff-dry feeling,
The perfect, trunk-lid fit of the old ceiling. Under there, it was all hutch and hatch,
The blue slates kept the heat like midnight thatch.

But when the slates came off, extravagant Sky entered and held surprise wide open, For days I felt like an inhabitant
Of that house where the man sick of the palsy
Was lowered through the roof, had his sins forgiven, Was healed, took up his bed and walked away.

                                                                     -- Seamus Heaney

 Lustral Sonnet

Breaking and entering: from early on,
Words that thrilled me far more than they scared me—
And still did, when I came into my own
Masquerade as a man of property.
Even then, my first impulse was never
To double-bar a door or lock a gate;
And fitted blinds and curtains drawn over
Seemed far too self-protective and uptight.

But I scared myself when I re-entered here,
My own first breaker-in, with an instruction
To saw up the old bed-frame, since the stair
Was much too narrow for it. A bad action,
So Greek with consequence, so dangerous,
Only pure words and deeds secure the house.

                                                         -- Seamus Heaney