“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.” –Marcel Proust
Seeing Differently
Having Parkinson’s disease can affect your eyes. As a movement disorder, Parkinson’s can make it harder to focus because it’s more difficult to move your eyes quickly; and, because you don’t blink as much, it can lead to excessively dry eyes as well, which causes discomfort and fatigue.
Since being diagnosed with Parkinson’s two years ago, at the age of 48, my eyes often get dry. But I see things differently, too.
It’s around 6 p.m., and I’m on my way home from The University of Texas at Austin campus. I decide to stop by my local Walgreen’s pharmacy to pick-up a prescription for rasagiline, my daily Parkinson’s medication. As I wait in line, a woman in front of me speaks with the pharmacy tech. I suppose that this woman is in her sixties. Overweight and using a cane, her bloated face, blotchy skin, and multiple sores on her hands and arms suggest years of poor health. A faded floral dress and frayed cloth handbag that rest on the pharmacy counter make me think she lives on meager resources, and the two-inch hole in the heel of her shoe tells a similar story.
I’m not eavesdropping, but I hear part of her conversation with the pharmacy tech.
“I absolutely have to have those pills,” she says, pointing to a small white bag in the tech’s hand. “And I can wait on the others ‘til next time,” she says, pointing at two other white bags on the counter. “I’ll get those when I get my check.”
She’s made these kinds of choices before.
I imagine that trying to decide which medicine to take, and which ones to wait on, feels like having to choose between food and water, or clothing and shelter. My stomach tightens up.
As the pharmacy tech gets the revised order ready, the woman steps away from the counter momentarily. She walks slowly to a nearby aisle to put other items that are in her shopping basket back on the shelf. She’ll have to wait to buy these, too.
One other person stands in line behind me. As I turn around, he sighs and shakes his head, and looks down at his Apple watch.
A different pharmacy tech calls me to the counter. I tell him my name, and he turns around and begins looking on a shelf for my single bag in the white plastic alphabetized bins. If I had no health insurance, my medicine would cost nearly $700 for a month’s supply. That’s the cost of a month’s rent in many places. I prepare to give him my $10 co-pay. While I wait, I think about the woman waiting and what she can’t afford.
It’s as if I now possess laser eyes with a state-of-the-art guidance system for recognizing people facing adversity, hardships…pain.
I can easily pick out of the crowd the young man who walks to class with forearm crutches and metal leg braces, the same way I presume he’s gotten around his entire life. I can hone in on the little girl at my kids’ school, who pushes against her autism to join her classmates in the school program. I ache when I see my colleague whose husband has recently committed suicide, and when I think of the struggle that she and her eight-year-old daughter will face. And my thoughts linger on the parents of Harrison Brown, a University of Texas freshman. He was killed on campus in spring of 2017, just days before the end of the academic year, by another student with severe mental illness. A few weeks later, Harrison’s father, Kurt, succumbed to his own neurologic disease, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
My Parkinson’s eyes now lock on people living with illness, disability, poverty, discrimination, or hopelessness. I’ve been able to catch glimpses of these maladies before, for most of my life, in fact; but since being diagnosed they pop with refractions I’ve never before imagined, much less seen.
Seeing Our Connectedness
For several months after my diagnosis, when I assumed my life was essentially over, I asked myself a lot of questions: How can I cope with having a progressive neurologic disease? With the challenges and complications that increase over time? With the unpredictability of any given day, much less a longer course of disease progression? How can I manage to live with these burdens?
I’ve learned that one way is by seeing personal struggles not as unique–which can lead to feelings of isolation and loneliness–but as part of a broader human landscape, where facing and coping with life’s hardships will, eventually, be everyone’s lot. All of us will face illness or other difficulties. That’s just how life goes.
Understanding this facet of life, the philosopher Freiderich Nietzsche put it well: “to live is to suffer and to survive is to find meaning in the suffering.”
Viewing Parkinson’s in this fashion helps unite my own experiences of hardship with those of others, whether their burden is Parkinson’s or something else, and this unity can prompt us, collectively, to see all who struggle with eyes of compassion, empathy, and respect. But seeing in this new way does more. Reminding us that we travel burdensome roads with others, and not alone, it births a conviction of solidarity, of togetherness. It’s the conviction that, together, we can strive to ease our own plight and that of others; that, together, we can do something good with our infirmity; that, together, we can and will find new meanings, ones that help us not merely to survive but to flourish in whatever our new voyage of discovery becomes.
Seeing Hope
One Sunday, my family and I are at the Austin Mennonite Church. Around Noon, when the service has ended, a man about my age approaches me at the back of the sanctuary. Wearing tattered and slightly dingy clothes, and having put several duffle bags in the corner of the room, I assume he lives on the street. Transient folks routinely visit this church, which embraces social, racial, and economic justice as part of its core mission. Everyone is welcome. No one gets turned away. Sometimes those who wander in want money or food. More often, they want human connection and reasons to hope.
After I introduce myself to this man, whose name is Joe, he holds out his arm, rolls up his sleeve, and shows me several painful looking sores. From his wrist past his elbow, his arm looks puffy and, in multiple places, oozes blood-tinged yellow puss.
“I’m afraid it’s getting infected,” he says, “I can’t get up to the clinic ‘til next week, but I reckon things’ll work out.”
I think of the story of Jesus and the beggar, Lazarus, who was covered with sores which were licked by dogs, and who longed to eat the crumbs that fell from the rich man’s table.
We’re having a potluck meal that day, so I invite Joe to make himself a plate of food. He does, and with it piled high he takes a seat at the table. I wonder how often he gets to do that.
As I glance back at Joe, who’s still enjoying his meal, I remember Kate, a middle-aged woman who also lives on the streets. She’d wandered in to church on a different Sunday and I met her in front of the coffee pot. The clean white coffee cup stood in stark contrast to her dirty fingernails and the dinge of homelessness that covered her. She heard voices and seemed scared and suspicious.
As Joe continues to eat his lunch and talk with new friends, my daughter, Holly, and I walk across the street to the CVS drug store and buy peroxide, antibiotic ointment, and bandages. When we return, Holly hands the paper bag to Joe. Looking inside, he tears up and puts his hand over his eyes. She looks at me and smiles, and then darts to the table of food to make herself a plate. She starts on the end with the desserts.
Joe lets his hand fall back to his side and looks at me, his eyes still moist and slightly red.
“Thank you, brother” he says, “I don’t know what to say.”
“You’re welcome,” I say, “and it’s our pleasure.”
We shake hands, and Joe smiles before making another pass by the food table, putting some rolls in his pocket, and walking out of the church.
I hope he got to the clinic.
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Photo by Adi Goldstein on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality; and currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press.
Follow him on Twitter @PDWiseBlog