“I want you to remember something. It’s really important. People experience this disease differently. It’s not the same for everyone.” Dr. T, my neurologist, then pauses, looks me in the eye, and with a Texan’s directness and authenticity says, “Don’t let someone else’s story become your story.”
A Craftsman
The summer after that fateful fall meeting with Dr. T, my wife, Tracey, our daughters, Meredith and Holly, and I make a trip to Rome. On the sidewalk in the Trastevere neighborhood, just outside our rented apartment’s front door, I watch a small, older Italian man working methodically to install something in an adjacent apartment. Made of ornamental iron, it looks like a portion of a decorative handrail for a staircase, or perhaps a piece of a light fixture.
I can’t tell for sure.
Barely five feet tall and stocky, he works from a tiny car, using the small hatchback area and the sidewalk as his workstation. Many Romans drive small cars, especially when compared to what typical Americans drive. In fact, other than government vehicles, I don’t recall seeing an SUV anywhere in Italy. This man works from a dark gray Fiat with black interior, which he’s squeezed into a parking space that’s only a fraction larger than the car.
His Fiat holds various tools and supplies, including a small saw that he uses to cut several pieces of iron, and a stationary file, which he uses to shape it. The file sits in a vice atop a pop-up workbench he’s placed on the sidewalk, just above a small gas generator that powers his saw. A stainless steel utility bucket also rests on the ground, next to the workbench, and holds additional tools. The large pocket attached to his leather tool belt has still more tools in it, and from its side hangs a cloth rag, a tape measure, and a small flashlight.
A minimalist by nature, I admire his efficiency and economy of space; how he gets so much work done with so few tools. Trying to remain unnoticed, I watch him work for at least ten minutes.
He takes several pieces of iron from his car, judges whether or not they fit together correctly, and on more than one occasion he measures them. He then cuts some of the pieces and begins a shaping and fitting process. He cuts the iron, bends it into form, files its edges, and rubs it smooth with the rag on his tool belt. Wiping his sweaty hands across the bottom of a worn and stained apron, I notice that he walks with a significant limp and that he labors when bending the down to retrieve a tool from his bucket.
As his design takes shape, he blows residual metal shards off of it with quick bursts of air from his mouth. It sounds like he has an air compressor in his chest. The smells of hot metal waft by and collide with hints of garlic and smoked meat. My eyes stay locked on this metallurgic maestro. He never glances away from his creation.
A Designer
After a few days in Rome, we take the train to Florence, where we’ve rented an apartment that overlooks the Arno River. Across the street from our apartment there’s a public access beach and outdoor bar, which I take note of and plan to visit one evening.
The next day, after hours of visiting museums, churches, and gelato bars, we walk along the south bank of the river toward our apartment. Meredith spots a lot of commotion on the beach and up and down the long inclined driveway that provides access to it. As we approach, we see a growing group of people lining the rock wall that overlooks the beach and driveway, and when we stop to ask what’s going on, we learn that a well-known Italian children’s clothing brand, Il Gufo, is about to have a fashion show.
Now, I don’t know Il Gufo from Gap Kids, but it quickly becomes clear that we will be staying to watch this fashion show, from start to finish, and that the cold beer I have my heart set on will have to wait.
The sun begins to set, and dozens of people begin making their way from a parking lot located on the street level, to the security checkpoint adjacent to the outdoor bar. Then, they walk down the long descending driveway and into the area of the beach where the fashion show will take place. Each person who passes below us could have leapt off of a magazine page—with beautiful clothes, coiffed hair, straight teeth, unblemished skin, no gray hair, presumably big bank accounts, and otherwise seemingly perfect lives.
But, of course, there are no perfect lives. As Anne Lamott says, all of us have to learn to dance with a limp.
Those in the growing crowd walk leisurely toward portable grandstands that back-up to the wall over which we are looking, and that have turned the beach area into an amphitheater. Many of them stop several times to chat along the way.
At one point, I notice a parting of the crowd that’s gathered at the top of the driveway, just before the security checkpoint. A dark blue Mercedes sedan makes its way slowly toward the beach, and a few people wave as it passes them. It has tinted windows, so I can’t see who is inside. I assume it’s a designer, or maybe a celebrity spokesperson for the brand, or perhaps an executive with Il Gufo. Either way, it’s someone with stature and influence in that industry.
The car stops in a staging area just beyond where the props for the fashion show end—it’s a Polynesian-themed set—and a cargo van, which had been parked close by, pulls up beside it. Four men exit quickly and walk with purpose to the van’s back doors, which open to its cargo area. They begin taking out flat and rectangle-shaped folding stainless steel squares and place them in the sand beside the Mercedes’ driver’s door. They work quickly but calmly. As these squares begin to take the form of a longer line, I can see that they’re assembling a sidewalk. By now, portable lights that reach high in the air on both sides of the grandstands are on, casting an almost fluorescent glow over the entire scene.
The driver’s door is now open, and I see a handsome man, who appears to be in his late fifties, waiting patiently in his seat. Every few seconds he turns his head to the right, speaking to someone who has come with him to the show. I can’t see the person clearly, but it appears to be a woman with long dark hair. Occasionally, he glances in his side mirror to observe the sidewalk team at work before turning again to his companion. His tan body and dark, slicked back hair makes his white linen shirt pop under the lights.
Then, one of the workers opens the trunk of the Mercedes, reaches inside, and removes an all-black wheelchair. He places it on the metal sidewalk and opens it up so that the seat flattens out. He then pushes it to the driver’s side door.
By now, the driver’s companion has made her way around the car, and, with the wind blowing her hair, she assists him with getting out of the car and into the wheelchair. She’s as beautiful and dignified as he is, wearing a floral patterned sundress and sporting a luxurious brown leather handbag across her body. As she pulls her silky hair out of her eyes, I notice several gold bangles on her wrist, and then, a large ring on her left hand, which makes me look at his hands, too. I see that he’s wearing a white gold wedding band. It’s similar to my own.
I wonder how long it’s been this way. For him. For her.
She bends down as he says something to her, and then nods her head and smiles. A line of people has formed along the metal sidewalk, almost like a tunnel of friends you see at a wedding, or a group of comrades assembling to touch swords at military parades. She begins to push her husband toward the appreciative crowd as the four men pull away in the cargo van.
I look at Tracey. She’s smiling at me with a kind of tenderness that’s typical for her, but which I’ve too often struggled to receive. I put my arm around her and squeeze her lower back. She puts her arm around me and does the same. A lump sits firmly in my throat.
“Daddy, I think it’s about to start,” Holly says.
“Finally!” says Meredith.
Music begins playing over a loud speaker.
The four of us take a half step forward and peer over the wall.
Hardships and Hopes
Don’t let someone else’s story become your story.
I appreciate Dr. T’s advice, and I recall it often. Though it’s difficult for all of us who live with it, the Parkinson’s beast affects people differently, and, over time, it can prompt a variety of challenges. Some of them can lead to walking with a limp, others can require the use of a wheelchair, and still others may be more hidden, such as depression, anxiety, or insomnia. As my friend, Michael Westphal, put it, “Parkinson’s makes you uncomfortable in your own body.” Consequently, while no Parkinson’s story lacks hardships, these will differ among people.
But I also think a lot about the craftsman and the designer, and about their stories.
With physical challenges and restricted resources they create beautiful things.
_____
Photo by Nick Karvounis 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 @allanhughcole