How do you tell the people you love most that you have a progressive neurologic disease? Many people with Parkinson’s, and those with other serious illnesses, struggle with this question. I certainly did. In fact, the two conversations that I most anticipated and dreaded were telling my parents I have Parkinson’s and then telling my children.
Here’s how it went with my kids.
Ringing the Bell
It’s a Saturday morning, ten months after my diagnosis. My wife, Tracey, has just returned from an early run and our daughters are still fast asleep. Holly, who’s 9, will likely be up soon. Meredith, our 11-year-old, will sleep until we force her to get out of bed. The bedroom window is open and an unseasonably cool breeze blows in the sounds of chirping birds. A neighbor’s dog yaps in the distance.
I stare at myself in the bathroom mirror. The Texas Longhorns cotton t-shirt that I’ve slept in, a gift from Tracey and the girls a couple of years earlier, reminds me of less complicated days. Its gray color matches the morning stubble on my face, and its wrinkles correspond with the corners of my eyes that hint at new kind of sadness carried deep within.
I grab a towel and make the one block walk to my gym. After stretching and doing exercises to improve my balance, I walk toward four rows of treadmills and elliptical machines faced by nearly a dozen television screens. A faint smell of sweat mixed with ammonia hangs in the air. Given my loss of smell, an early Parkinson’s symptom, I wonder if it stinks worse than I know.
Before stepping on a treadmill, I speak briefly to a couple of friends I’ve known for many years. Our kids have grown up together, and they’re part of my community. If they knew I have Parkinson’s they’d be supportive and encouraging, but I havent shared my news.
I slide my ear buds into my ears, take a drink from my water bottle, and pull up a music playlist on my phone.
After a few minutes on the treadmill, I break a sweat and my lungs have expanded. Having found my running cadence, the song “Box of Rain” by the Grateful Dead begins to play. It’s been a favorite of mine since I first heard it at Davidson College in the late 80s. When I hear it now, it takes me back to when it played over and over again on my roommate’s Pioneer turntable in Belk Hall. The hallway outside our room often smelled like sweat, too, absent ammonia but with an old beer and cold pizza overlay.
As I run, my body glossy with sweat and my breathing getting quicker, I hear the band’s bassist, Phil Lesh, sing about the power of love to get you through life’s difficulties—to “see you through.”
Tears begin to fall over my cheekbones as my thoughts flash back to the last year of my life, and I linger there for a moment. Bone-chilling sadness, fear, so many questions, and an enormous sense of loss have swallowed me. These feelings have ebbed and flowed since those early weeks and months after the diagnosis, but they still visit pretty regularly. I imagine they always will.
I reach for my towel and wipe the sweaty tears from my face, and then take another drink from my water bottle, which my girls typically use for school and which has red, pink, and purple hearts all around it.
My thoughts jump to what going public with my Parkinson’s will be like, and how life will be different once people know. “You can’t unring that bell,” I frequently say to Tracey.
Who will pity or dismiss me? Who will treat me differently or think I’ve lost too much to matter any longer? Who will never acknowledge that I have Parkinson’s, whether because they’re uncomfortable or because they don’t care? For the better part of a year, these fears have nearly paralyzed me. I’ve spent so much energy speculating and worrying.
You are still the same Allan, Tracey keeps saying, our friends will be sources of support.
I also know that my secret has become too much to bear.
My mind fixes on Meredith and Holly, and on how I want them to see me, their father, live authentically, face adversity, and try to make something good spring from it.
I want them to know the truth.
Dopa What?
I finish my workout and walk home from the gym. After taking a quick shower, I join Tracey, Holly, and Meredith in our living room. The girls sit on the floor drawing in their sketchbooks. Tracey sits on the sofa, bookended by our two sleeping dogs, Sunny and Fiona. I take a seat across from Tracey, in the recliner. Soft music plays in the background. It’s an uncharacteristically mellow moment in our home.
Holly crawls up into my lap, bringing her sketchbook with her. Her hair smells like cookies and shampoo. Meredith remains on the floor hard at work. The tip of her tongue sticks out from her mouth.
Not knowing how to begin, I mention a close friend who lives with a chronic disease, noting her recent struggles.
“It must be really hard for her,” Meredith says.
I try to calm my quivering voice.
“I think you’re right, Mer. But having the love of her family and friends probably helps a lot,” I say.
After a brief silence, I get up my nerve.
“I wanted you girls know that I’m living with a disease,” I say.
“What?” Meredith says, with her big brown Milk Dud eyes opened wide. “What do you mean?”
Holly looks up at me, too, with puffy, poked-out lips.
“Daddy! What disease?” she asks.
Taking a deep breath, I say, “I have something called Parkinson’s disease.”
My bottom lip begins to quiver.
Don’t you cry, I say to myself.
“Are you going to die, Daddy?” Holly asks, her eyes now growing moist.
“No, honey, you don’t die from Parkinson’s. It’s something I can live with for a long time.”
“But that’s an old person’s disease, Daddy, and you’re not old,” Meredith says. “…Oh my God, I don’t want you walking with a cane.”
“Not everyone with Parkinson’s needs a cane, Mer…and you’re right, most people who get Parkinson’s are older; but not everyone is older when they get it. Like Michael J. Fox; he got it in his late twenties,” I say.
“Who’s Michael J. Fox?” Holly asks.
I see Tracey smile.
“He’s a famous actor,” I say. “He got Parkinson’s as a young man; and he’s had it a long time; and he’s done amazing work raising money to help find better treatments and even a cure; and he’s taught us a lot about how to live a good life with this disease.”
Tracey’s kind eyes urge me on.
“I’m not going to die from Parkinson’s but, over time, probably many years, it’s going to get harder for me to move. I’ll probably get slower and stiffer, and my hands might begin to shake a little. Most people with Parkinson’s have these kinds of symptoms at some point,” I say.
“What causes it, Daddy?” Holly asks, pulling her lips into her mouth and biting down, her eyes shining from moisture.
“There’s a chemical in your brain called dopamine, which helps send signals to your body so that it can move the right way. When you have Parkinson’s, you’re losing dopamine, and, over time, it gets harder for your body to do what your brain wants it to do. It gets harder to move.” I say.
“Dopa, what?” Holly asks.
“I’ve heard of dopamine,” Meredith says. “But how long have you known this?”
She’s now glaring at me, her eyes looking more like brown darts.
“I’ve known since last fall,” I say.
“What? You’ve known that long? Why did you wait to tell us?” Meredith says. “I’m mad about that. We’re old enough for you to tell us these things. Daddy, I wish you’d told me.”
Her voice cracks.
Holly looks back at me. She still has tears in her eyes.
“It’s going to be OK, Honey. My doctors tell me I’m going to be OK for a long time; and there are good medicines available now, and others will be coming out in the next few years. It’s going to be OK.”
Trying her best not to cry, Holly asks, “Can we still go to Disney?”
She’s referring to plans we’d made to go with my Mom and Dad to Disney World in the spring.
“Of course, my love. We’re going to have a great trip. And we’re going to have a great life, with many more fun trips ahead,” I say.
She gives me a hug and then gets back on the floor to resume drawing.
“I’m mad, Daddy. You should have told us,” Meredith says.
“I’m sorry you’re angry, Mer. I needed some time to learn more about Parkinson’s and to get more comfortable with having it. I didn’t want you and Holly to worry.”
“But you should have told us. Or, at least you should have told me; I’m old enough,” she says.
“I’m sorry. I told you when I was ready. I hope you’ll forgive me and understand,” I say, as I get on the floor and kiss her on the head.
“I forgive you, Daddy, but you still should have told us,” she says with a mischievous smirk.
I get up from the floor and walk to the back of the house and into the bathroom. Looking into the mirror, my eyes well up yet again. I exhale and wash my face. A few minutes later, I go back into the living room, where my three loves still sit.
“Who wants breakfast tacos?” I ask.
“Duh,” Meredith says. “When do I not want breakfast tacos?”
“I want some, too, Daddy,” Holly says.
“I’ll have one,” says Tracey.
We often have breakfast tacos on the weekends. It’s basically a family ritual that most Texans will understand. Much of the time, the girls posture for their preferred source. Holly likes Taco Shack, while Meredith always lobbies for Torchy’s. There is none of their arguing this morning. They each put in their orders, their usual requests. Meredith wants sausage and egg; Holly, potato and cheese; and Tracey, egg and cheese.
As I get to the front door, Meredith says, “One more thing Daddy, you should order the dopamine taco special.”
______
*Shared with permission from Tracey, Meredith, and Holly Cole.
**With fall birthdays, Meredith will soon turn 14, and Holly, 12.
Photo of mural at Jo’s Coffee, Austin, Texas
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 @pdwise