My day begins in the darkness of dreams. I half sleep, so nightly mingle, in a tangled net of remembered dreamland images. There is usually a narrative mixing of painful past and pragmatic trivial concerns.
I optimistically assume I am working through torrents of trauma, toward a future of mindful clarity. At best I am sad but glad to be alive.
Next at issue is the container of urine at my bedside. Raising from bed is a logistical challenge. So doing it, so many times every evening, encourages my use of this urinary variation of a bed pan.
On a bad night, I will have wet my bed, on a good one, I will have slept several times, deep enough to allow for a feeling of normalcy through much of the day. This ‘new normal’ for those of us locked into the cult of Parkinson’s is a flawed daily striving, to appear as I was before.
Trying, through each interaction, to be someone other than a man who pees his pants, and who must preplan toilet access, based on a schedule completely out of his control. A man made to look much older as he waddles slowly in zombi-like steps to put out the trash.
A once professorially clad romancing-grey cowboy, now wobbling upstairs one-step-at-a-time to his classroom, out of breath and flustered. This ‘new normal’ is a skull necklace of embarrassments, choreographed by some evil god with a vicious sense of humour.
If I am truly a man of character, no one should detect my battlefield of bodily symptoms. No one needs to know how shitty I feel. But I am new to all this. My mind was once lucid, but now mirrors the groggy demure of an opiate high, orchestrated by a vengeful lucifer.
Once my cerebrum was reliable enough to bemuse bystanders, with a blistering confidence. An insufferable cockiness has led me out into the wilderness of a hundred infamous cities, with an enviable menagerie of lovers and friends. My organ-led testosterone-rich vitality has always made chance taking an assumed right of passage.
Adventure-lust and liquid thoughts, germinating into new realms of exploration, have led me into fields of happiness. Life was sublime even when I was too naive to notice.
Now I have Parkinson’s and life is different. Now my hands and legs are shaking. My neck muscles tense and I fear loss of voice in my chosen profession. Fearing my loss of swallowing, of suffocating anxiety, I feel reticent to leave the house. Traveling, once my life blood and turn on, now a terrifying variable of unknowables.
I want to find a way to tell friends why I do not feel fun. My life has changed from rich to bitch, and I still ain’t tamed that shrew. I am still learning just to be, simply and pure, me again. And me... ain’t easy… with Parkinson’s.