It’s 4:45 a.m. on Sunday, eleven days after my Parkinson’s diagnosis at the age of 48. I awake to the sound of the door lock’s firm click as my wife, Tracey, leaves our hotel room on Manhattan’s Upper West Side. She and our close friend, Stacey, are catching the ferry to Staten Island together, where the New York Marathon begins. We’ve decided to share the news of my diagnosis with Stacey and her husband, Paul, but no one else knows.
Our family had been excited about this trip for over a year, ever since Tracey decided to run the Marathon. She’d been an avid runner in college and when we first married, but she gave it up for two decades before getting the running bug again. Once she did, she wanted to run her first marathon. Growing up on Long Island, it had to be New York.
As Meredith and Holly sleep, I lie in bed and listen to their gentle rhythmic breathing. Only a faint siren in the distance interrupts their sweet melodic sounds. I think of when they were little, and of the nights when they both wound up in our bed and I could smell lavender Aveno baby shampoo on their hair. More than ever, the enormity of parenthood grips me.
Still too early to get out of bed, I replay the previous few weeks, from the time I first noticed my finger tremor until I learned of my disease. A growing heaviness covers my chest as several toes on my left foot begin to cramp—something called dystonia. I’ve experienced it in both of my feet, and fairly often, for a couple of years. It’s a common Parkinson’s symptom. I had assumed I simply needed to eat more bananas.
Except for faint light peeking through the top of a closed curtain, darkness fills the room. Clouds of questions roll in, as they have every night since my visit with Dr. Hill, my neurologist and new best friend.
How will Tracey respond as I slow down and become less physically capable?
What if down the road I need help with everyday tasks?
Will her compassion turn into pity?
How long will I be able to work?
Will I be able to pay for my kids’ college?
How will our plans for the future change?
…And how will our girls deal with all of this?
As my mind tries to field its own rapid fire questions, it also scrolls through a range of scenarios. None can pierce the enveloping darkness.
***
Tracey and I were a few months shy of celebrating our twenty-fifth wedding anniversary when we learned I have Parkinson’s. A social worker by training, she was employed in nursing homes and hospitals for the first thirteen years of our marriage, until we had Meredith. Geriatric social work suited her perfectly. Raised in the home of her grandparents, she had a love for older adults, and her disposition and personal strengths aligned perfectly with their needs. She’s a born nurturer who’s never met a stranger.
From the time she began this work, when we were in our early twenties, I often joked that she was my “long term investment” and that I’d have an “in” with a good nursing home when I needed one. Now in my late forties, and in what I had assumed was still the prime of life, I wasn’t ready to begin drawing on this investment.
***
Later that morning, Meredith, Holly, and I, along with Tracey’s cousins, Tom and Peter, make our way from below the Atlantic Avenue subway station in Brooklyn up to the street. As we get to the top of the stairs, a majestic blue sky bursts over the city and a light, unseasonably warm, breeze blows. It invites pleasant smells from a half-dozen street food vendors to collide, which my daughters notice with delight.
“Yuuuuum!” says Meredith, “love me some funnel cakes!”
“Oh yeah,” Holly says, as she does a dance called “The Floss.”
Meredith joins in.
“We’ll get something after we see Mom. We don’t want to miss her,” I say, trying to keep us all on task.
As a band with four middle-aged men plays loud music on the large sidewalk, an AC/DC song, our pace quickens. We walk a couple of blocks, starting and stopping as we make our way through thick crowds. Holly, who’s nine, holds my hand tightly. Meredith, who’s eleven, has reached the age of rejecting my offers to hold hands, but she stays close, too, sandwiched between me and Tom. Searching for an opening along the route up 4th Avenue, I spot an area that will allow all of us to see the runners as they approach. People are friendly as we hurry to get there and snake our way through.
When we get to our waiting spot, I take in the scene. People smile and sway as another band plays nearby. Groups of runners pass steadily by. One spectator, a man wearing a white shirt with bright yellow smiley faces on it, holds a handmade sign. It reads, “Life is Good!” Staring at him fiercely, I almost flip him the bird and yell “Bullshit!”
My daughters’ voices bring me back.
“Is she close, Daddy?” Holly asks.
“I hope she gets here soon, I’m hungry,” Meredith says.
Meredith takes hold of the cowbell we’ve brought from Austin. Holly positions a sign they’ve made. It reads, Go Mom…Bib #29292.
After glaring back at the man holding the smiley face sign one more time, I pry my eyes away and look at the phone app that I’m using to track Tracey’s progress. I tell the girls when she gets to mile seven, and we begin scanning the colorful sea of runners in search of our pearl.
Each runner has a story, and I suppose each story has elements of both joy and sadness, calm and worry, hope and despair. That’s the way life is.
I notice a few other signs in the crowd, including one that reads The Michael J. Fox Foundation for Parkinson’s Research, and several groups of runners are wearing Team Fox jerseys. [1] Without thinking, I stick my fist in the air and yell, “Go Team Fox!” as one of the groups passes us. One of the runners looks over at me and pumps his fist in the air.
Never missing anything, Holly asks, “Who are you cheering for, Daddy?”
“For Team Fox, my love.”
Meredith interjects, saving me from any further explanation or commentary.
“How much longer, Dad?”
“Very soon, Mer.”
The first time we see her that warm autumn morning is at mile eight. Her purple New Balance shoes, which match the color of her headband and shirt, cushion her gazelle-like stride as she moves in cadence up 4th Avenue. The look of joy on her face makes me tingle. Seeing her outpace a lot of younger men makes me smile. I wave both of my arms high in the air and yell, “Tray!” She sees me and runs toward us, flashing the same inviting smile—equal parts kind and comedic—that captured me a quarter of a century earlier in Boston. We all let out cheers and take turns hugging her. The girls hold onto their mom tightly.
“Get moving. You have eighteen miles to go!” I say.
She touches her hand quickly to her lips two times and extends it to meet mine. Our eyes lock.
“I love you, Allan,” she says.
“I love you,” I say, trying to slow my quivering lip, “Go run like the wind.”
She smiles, blows me a kiss, and, always the zany soul, takes a few strides before turning around and running backwards. She adds several half bows (technically, she does a dance called the Dab).
I give her a thumbs up. She smiles, turns, and is absorbed back into the colorful sea.
I smile back at her. My sunglasses hide my red, moist eyes.
We see her two more times, at mile nineteen and just before she crosses the finish line in Central Park. It’s now cooler and cloudy. Her pace has slowed but her smile is bigger than ever. Glancing down at her purple shoes, I remember the day she bought them at Ready to Run in Austin. Modeling them for me in our living room, the smile on her face and the care she took tying them reminded me of a kid who’d just gotten her first bike. These were her shoes for New York!
She’s worn them faithfully and they’ve served her well for countless miles.
I think of the miles ahead.
_______
[1] Part of the Michael J. Fox Foundation, which raises money for Parkinson’s research, Team Fox members take part in various running, cycling, climbing, and other athletic events, including triathlons.
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