Want to know the truth? I don’t want to write a damn word about the disease I have, but it appears as though my choices are limited, as the two, the disease and the writing are inseparable and strange bedfellows. Writing about it will not make the disease disappear, decrease or ease the related frustration, impatience or anger. The feelings inside will not diminish anymore than the pasted on smile that I wear, will cover them. I am not a heroine who plows ahead through scheduled exercises, weight machines and pool exercises just so I won’t walk worse tomorrow. I cough, drool and tremble, speak too softly and have almost reinvented myself to become someone I’m desperately trying to camouflage. I want you to know me as I once was and not as I probably am now. "Probably," because I’m not sure myself what the new and unimproved me is and/or has become. Moreover, I will not allow you to know the many "me’s." Many, because I wear different disguises to fool you, but mainly to fool me. My disguises are my stories, my poems, my essays or any literary form that will suit my subject of expression.
I was told that I "probably" had Parkinson’s Disease approximately 5-6 years ago. It started with slowness throughout one side of my body, not rendering me severely disabled, just slower. I refused to accept the diagnosis, even though I eventually began taking meds to replace the diminishing dopamine from the brain. My anger was joined by depression and inactivity, leading eventually to an office visit with a psychotherapist, who challenged me to write about my affect, my feelings. Writing about feelings does not necessarily mean ownership of the feelings. I’m capable of writing in quite an abstract fashion and from a rather remote distance. I had to show how much of a superwoman I was. Not only was I capable of having a progressive, non-curable disease of the brain but I would be able to handle it better than anyone else. I refused to complain about my discomfort and certainly would avoid asking for or receiving help.
Moreover, sympathy was n ot acceptable from whomever or whenever, nor would I degrade myself by wallowing in self-pity. The rendering of pity by a well-meaning friend has only one interpretation for the receiver: I am less capable than you.
And so I wrote. Even though I had written a smattering of poems years ago, and had studied literature, I was astonished that the ability had not only lingered on but had flourished while asleep. I wrote about anger, and initially it was my own, my anger, but then I learned how to wear all kinds of disguises and learned how to assign the anger or whatever the affect, to an inanimate object, a hat, for example, that wore the grief and anguish for me. It belonged to that hat, for instance, and was experienced by the hat, and not me.
Other guises came quickly and I became a painter of nature using words as my medium, without oils, pastels, or watercolors I painted images behind which I found refuge and identification. I could actually become the silent glistening snow under a white icy moon or the storm ravaged seas or calm waters shimmering with late-afternoon sun diamonds...... my writing came pouring out, non-stop, and at a pace with which I could barely maintain. Words from everywhere visited upon me and I welcomed them as one would welcome a refuge in a storm. They became my mainstay, my fort against the disease and a safe harbor against the world. It was not the words alone, but the words intertwined with my imagination and my determination to sustain my integrity, though it meant temporary avoidance of the disease hidden beneath the masks.
An unexpected side effect of my daily writing is the information that my neurologist gave to me during my most recent exam. He informed me that my Parkinson’s has NOT progressed during the past year. It has maintained a stable course due, perhaps, to the increased activity of my brain from the writing, which may have possibly slowed down the expected loss of dopamine. Succinctly: increase the brain activity = slower loss of dopamine = maintenance of symptoms.
Fortunately, even at my age, I have not grown weary of writing and have learned to accept my need to not tell all, all of the time, and to speak lightly of sweet musings and whispers of tender love. With like compassion in mind, I hope my readers allow my lassitude of seven decades plus four to wear my masks to the ball and dance ever more.