Hiding
With a petite frame and straight dark brown hair that reaches past her shoulders, she appears to be in her early 30s. Wearing jeans, a light weight gray cardigan sweater, and blue Adidas running shoes, an inviting smile shapes her face and pushes against her natural shyness. Not long after she takes her seat next to my daughter, Holly, I learn that her name is Deena.
She, her husband, and their two young children sit across the jumbo jet’s aisle from my family: Tracey, my wife; our daughters, Meredith and Holly, ages 11 and 9; and me. All of us are heading to Italy.
On the long, overnight flight to Rome, Deena and I have several brief interactions between our attempts at getting some sleep. Holly finally nods off with her head in my lap and her gradually unfolding legs encroaching on Deena, who gives a maternal “it’s ok” wave as she slowly closes her own eyes.
At one point in the flight I notice that her hands shake rather vigorously. They don’t shake when at rest in her lap or on her seatback tray, which would be typical for Parkinson’s disease, but rather when she tries to use them, such as when opening a packet of peanuts or holding her fork; or when she changes TV channels on the touchscreen monitor built into the seatback in front of her. I see Holly glancing at her hands several times and then quickly looking away. With my peripheral vision, I can see her struggling to steady her reach and I watch her almost constantly for several hours. As sleepy as I am, I can’t close my eyes.
At several junctures she sighs, and at one point she slams a pack of crackers down after several attempts to open them. I want to offer to help, and even more to ask about her condition.
I noticed your hand tremors….
This is awkward, but do you have essential tremor? Or is it Parkinson’s disease?
…Because, well, I have it.
But I never say a word.
***
It’s the summer of 2017, about eight months after my Parkinson’s diagnosis. Only Tracey, my doctors, and three or four close friends know I have this disease. Otherwise, I’m carrying the buden of secrecy.
For several years, Tracey and I had planned to take the girls to Europe. But it was also one of the things we’d put-off. We told ourselves that it would be expensive, and that the girls would get more out of the trip and remember it more vividly when they were older. We assumed we had unlimited time.
We land in Rome at around 10 a.m. on a Sunday morning and go directly to the apartment we’ve rented in Trastevere, a vibrant and eclectic neighborhood located on the Tiber River, west of Rome’s center and just south of Vatican City.
I take off my shoes in the apartment’s front portico, and the cool ceramic tile floor soothes my warm feet. As I pull two of our four carry-on roller suitcases through the minimalist living area, my eyes lock on the stainless steel Moka Pot—a stovetop espresso maker—prominently displayed on the kitchen counter. Tracey’s Italian grandparents always had one, which they often used for making “the black coffee” after dinner.
Immaculate and quiet, the apartment opens up beyond the kitchen to a courtyard with dozens of flowers in bloom. Pinks and yellows, purples and oranges invite unanticipated joy and calm. A fresh mixed-flower bouquet sits on a small black wrought iron table that looks newly painted with two matching chairs. The bouquet blows in the gentle wind, keeping pace with the matching contents of small rectangular terracotta flower boxes placed in each of four window sills.
Exhausted after the long flight, we prepare to settle-in and take a brief nap.
“I think it’s time to spray the bidet and hit the hay!” Meredith says.
Later that afternoon, we head to Vatican City.
Seeking
For several miles he’s engaged us in rapid conversation about various things Roman—places to see, museums to visit, food to eat. The small-framed, middle-aged taxi driver has big white teeth and jet black hair. He offers a pleasant “arrivederci” before stopping the car and letting the four of us out a few blocks from Vatican City’s outer wall. As the warm sun shines brightly, we walk toward St. Peter’s Square on narrow gray brick roads called sampietrini. Tracey gasps over the architectural beauty while Meredith, Holly, and I breathe-in the smells of garlic and al fresco dining that waft in the air. All of us are hungry, so we stop to have dinner at La Vittoria, which a family friend had recommended.
Seated on the front patio, we eat pasta and pizza and sip wine as the ends of red gingham tablecloths move with the gentle breeze. The red matches my bloodshot eyes, as I didn’t sleep on the flight from the states the night before. I watch scores of people—locals, tourists, and religious pilgrims—scurrying over sidewalks and crosswalks as they go about their business. Motorized scooters that outnumber cars weave through the thickening traffic in seemingly choreographed ways. An occasional horn interrupts the otherwise low, steady hum of city life.
After dinner and a stop at the impressive gelato counter a few doors way, we continue the walk to St. Peter’s Square. I first glimpse the majestic white stone columns, or colonnades, that wrap around it when walking up a street called Via delle Fornaci, which narrows and becomes Piazza del Sant’uffizio a few hundred feet before you get to the square. Shaped actually more like a circle, the expansive, open space funnels large crowds and one’s attention west, toward St. Peter’s Basilica, the largest church in the world. Designed in part by Michelangelo, it overlooks the square, where the Pope presides periodically at large masses. Some of them draw over 300,000 visitors.
As we cross through the colonnades and walk into the square, the girls take off running across its weathered gray cobblestone pavers. They run first to the Bernini Fountain, the newer of two magnificent fountains in the square, and it’s all they can do to refrain from hopping the low steel fencing that encloses it. It’s still warm outside, and though a breeze continues to blow they long to feel the water’s coolness.
“Can we get in?” Meredith asks as she flashes a signature mischievous smile. Her olive skin, a gift from Tracey, glows beautifully in the sunlight and fits the Mediterranean surroundings perfectly. “Not unless you want to spend the night in a Vatican jail,” I say. Holly lifts her eyebrows, opens her delicious Milk Dud eyes wide, and chuckles.
Not yet twelve, Meredith nevertheless rolls her eyes in that pre-teen way, and then she and Holly pull away and dart to the tall Obelisk, located at the midpoint of the square. Made of granite, and brought to Rome from Egypt by the emperor Caligula in the first century, its four-sided structure rests on four couchant lions and narrows at the top, where it reaches 84 feet into the air and is capped by an iron cross that can be seen from a distance. As an ancient pagan monument located in the holiest of Christian settings, it symbolizes humanity reaching out to Christ. [1]
It also functions as a sun dial, and as the sun begins to set, it casts growing shadows over the venerable, expansive space.
Tracey continues walking toward the Obelisk, trying to catch up with Meredith and Holly, but I linger behind, drawn-in by the fountain’s serenity. As Holly turns around to wait for Tracey, the giant dimples in her cheeks, a gift from me, reveal an innocent joy that perhaps only children know. Her flawless skin, protected by a heavy dose of sunblock, still glistens in the evening light.
Turning back toward the fountain, I watch the water spray firmly upward into a sky painted with bold yellow and orange streaks, before reversing course and cascading over two large rounded tiers and back into the ground-level pool. I stand before it for several minutes, soothed by its sounds and occasional wind-blown mist. With its massive and meticulously kept dome, the grand Basilica serves as an inspiring backdrop. The 140 saints, cast in stone and perched atop the wrapping colonnade, add religious heft, while the developmentally delayed young girl in a wheelchair and the middle-aged blind man standing across the pool add humanity.
I stand there thinking about my spiritual path—from attending Duke Divinity School and Princeton Seminary, to spending nearly twenty years as a minister and seminary professor—and I wonder what I really believe.
Why so much suffering and despair in life?
Why so much injustice and inequity?
Is this all there is?
Jesus said, “Come to me all who labor and who carry heavy burdens, and I will give you rest,” and, speaking to his followers for the last time, “remember, I am with you always, even to the end of the age.”
Is this true?
Or, did Nietzsche have it right? That, “to live is to suffer and to survive is to find meaning in the suffering.”
Could both be speaking truth?
Will I find something that gives me lasting comfort and hope as the Parkinson’s clock ticks?
My eyes flit to the four or five others flanking the fountain, and I wonder if they’re exploring similar questions shaped by their own unique circumstances and experiences. Questions having to do with God’s existence and power, with God’s mercy and concern. Questions I began asking years before and to which I thought I had at least some provisional answers.
With tears falling down my cheeks, I ask God to help me find peace and to preserve my health. Looking beyond the fountain once again, I catch a glimpse of my girls lost in play around the Obelisk, and I ask God to provide for their needs, too, and for Tracey’s, and for my parents’. I also ask for the gift of watching Meredith and Holly grow-up, and of being active with them; and to be able to write and teach for many years; and to keep making love to my wife; and to still matter, to others and to myself.
…and to be an old man when I die.
I want to bathe my face with the cool water.
[1] See http://stpetersbasilica.info/Docs/seminarians.htm#Obelisk.
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