I packed up and headed toward Sumpter after googling weird shit to do in Wisconsin within 50 miles of Madison.
I was going to see Dr. Evermor’s Forevertron. The Guinness Book of World Records said it’s the largest steel sculpture in the world. Google maps located it at a place called Sumpter some 36 miles away when choosing the route with less freeway. Perfect. Country Roads and farms and a premature autumnal landscape.
Yellowing trees. Corn looking like tamale husks. Surprisingly little roadkill. Red barns with sandstone foundations. No flocks of starlings, murders of crows, or the sing-song tweets of redwing black birds. Just me, and a couple of hogs with doubled-up helmet-less riders flying patriotic colors taking the curves, calm and courteous.
I followed, behind a bug-splattered windscreen listening to a public radio station playing classical music. Obama, Biden, Hillary, Bernie bumper stickers on my rear.
Kick-A-Boo Road, The Missouri Club, Black Earth, Snuffy’s Campground, Natural Bridge State Park, and an amazing roadside monument remembering Wisconsin Vets with a tank positioned between an F9F Panther Navy Fighter jet and an HU-1 Huey Helicopter, both on pedestals at attack angles. Acres of tiring corn provided a backdrop for this well-maintained display of pride. I passed the hot LZ1 and exited the Highway. I was now in what I assumed to be Sumpter.
The street ran the perimeter of a group of small white bungalows reminiscent of shotgun houses in New Orleans, but these were plain—not modest, but poor. Their asbestos siding looked rotted if asbestos could rot. Scattered on the small front lawns were sun-bleached plastic toys, the rusted discarded contents of toolboxes, and things left unrepaired. It looked like a box of faded photographs upended. There were cars and motorcycles that wouldn’t interest a used car salesman. Nothing being worked on and no one about—adult, child, or pet.
It scared me. The loneliness of it resembled my life. Is this how I will be found? Alone amongst the clutter of life?
I feel claustrophobic in my own skin. Moments of comfort never last very long.
I’m unable to sit still for long or lie down for long. There seems to be no chair or pill that will comfort me.
I feel I’m being pushed by a kind of relentless agitation; creating ceaseless fatigue. I wish for a quiet, still moment but I’m afraid I will find tranquility only in death.
The way I shake, I feel I am in the rattle of a snake. The way the wings of the cicada shake under the sun, under the tree whose leaves shake from the wind. The wind shakes from the moon. Together we shake like the fur of a dog stepping out of the water. or a horse’s hide flicking off a fly.
I cannot sit still ever again. I will never know stillness. My pond is always rippled.
Everything has a frequency, has a cycle, has a season, has a breath, has a beat, has a moon, and has a sun.
I have difficulty with silverware and chopsticks.
I have a blank, expressionless face called Parkinson’s Masking.
Because of constipation and tremors my ass is often shitty.
Because of spastic bladder my pants are often wet.
Because of tremors I often miss the toilet bowl.
Because of my gait and my posture I’m often mistaken for drunk. But sometimes they’re right.
Because of tremor I have difficulty typing and texting, so I use dictation, which is imperfect and equally frustrating.
I can’t dance or run or fight. I can ride a bike sometimes. Sometimes I can mow the lawn and rake it and sweep the sidewalks.
I like washing dishes; it makes me feel useful and it’s meditative. Cooking can be difficult—chopping vegetables and stirring pots. When I have sex I’m usually on the bottom because it’s too hard to be on top. Lying in bed is not easy; the bed swallows me up and it’s difficult to move. Rolling over changing positions is very difficult. My eyesight is constantly changing though new glasses have helped some. Still, every day my eyesight is different. I believe that’s related to my blood pressure. I have orthostatic hypotension which is the lowering of blood pressure upon standing up. I can pass out from that, but I haven’t yet.
I worry that I’m going to die from choking because of the difficulty I have with swallowing, which is a Parkinson’s symptom.
I worry about falling and hitting my head because my balance is bad. I do yoga to try and offset this feeling, and it seems to help.
The third thing I worry about is pneumonia, which is easier for me to get because of the difficulty in swallowing. I’m also more likely to develop skin cancer because of Parkinson’s. I don’t admit this easily, but I am privately terrified of what the future may bring.
There is no cure for Parkinson’s disease, and no real understanding of its causes. There are no tests to prove 100% that one has Parkinson’s. And just as there is no way to measure the amount of serotonin in one’s brain, there is no way to measure the amount of dopamine in one’s brain. So the medications are not accurate or precise. And, of course, every person is different. Their metabolisms are different. Their symptoms are different and their reactions to the medications are different. The side effects of the medications vary from person to person. The symptoms vary daily in each person. Every person has to go through an agonizing process of figuring out how all of this works for themselves. They say if you meet a person with Parkinson’s, you have met one person with Parkinson’s.
Sometimes there’s this feeling of having to prove that I have Parkinson’s because I might not be shaking, because that’s all people understand about Parkinson’s. It makes you shake.
When in fact, shaking is the easy part. How it affects your life, your relationships, the small intimate nuances of one’s life, is so daunting and complex it makes you want to give up.
My lover, my caregiver, thinks I’m negative and pessimistic and don’t do enough to help myself get better or be better. That may be true to her. To her I may be that way and certainly I am that way at times, but to say that that is all I am is dismissing who I am and the subtleties and perpetuities of this disease. She is now my ex. No one is entitled to a caregiver. If you have one, be grateful and show it. Doing this disease alone is not easy.
I try to find joy in simple things like walking our dog or riding a bike or eating. I like taking photographs.
I like writing poems. I love travel and road trips. I love visiting friends, my son, and family. I like dreaming. I can still dream.
I love reading. I love being alive and I love getting out of bed to see what the day will bring. Even if I feel like complete shit and want to kill myself, I still want to see what’s around the corner. Curiosity is what keeps me going.
I still want to know things. I still want to learn. I love history. I want to know the trees and birds wherever I am. I know little about art and art history and want to learn as much as I can.
I have applied to be a docent at a local museum in order to understand and learn and be amongst people and try to get over my fear of how I’m perceived or think I’m perceived, standing there shaking, tired, bent, searching for the right words to say how much I love you.
In 2014, a group of educational leaders passionate about teaching health science students to move beyond the “how” and “what” of being a clinician—and explore more expansive questions regarding the nature of human suffering and healing—created the Journal of Humanities in Rehabilitation (JHR).
Member since 2019 | JM14274
NO COMMENT