How do you tell the people you love most that you have a progressive neurologic disease? Many people with Parkinson’s, as well as 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.
I have written about the conversation with my daughters in “Telling My Children I Have Parkinson’s Disease.” Here is how it went with my parents.
The Plan
It’s a Wednesday morning, and I’m with my wife Tracey and our children, Meredith and Holly, in Surfside Beach, South Carolina. As we have done for many years, we met my parents there for a weeklong stay. I spent my high school years just a few miles north, in Myrtle Beach, and although I moved away over 30 years ago, a portion of my soul still lives in that part of the world. Being by the ocean and smelling salty, humid air, if only for one week each year, resets me. It also takes me back to a fondly remembered childhood in coastal South Carolina. If you have ever visited this region or read a Pat Conroy novel, you probably have a sense of its charm.
Tracey has taken the girls to the beach. I hang back to wait for my parents to return from the grocery store. I think back to a day earlier, when speaking by phone with my longtime friend, Elizabeth, with whom I went to college and who lives with her own chronic illness, multiple sclerosis (MS). Along with neurologic challenges, she and I share a love of writing and we speak often about our respective projects and our journeys with illness. A font of wisdom, not to mention, wicked smart humor, I had shared news of my diagnosis with her several months earlier.
“It’s time,” I said.” “I have to tell them.”
The early morning coastal sun beats down and the air is thick. I smell pine and Coppertone sunscreen as I wipe my sweaty face with a blue bandana.
Hiding my condition from my parents, whom I love so much, weighs on me. It’s been nine months, and I feel as though, over time, my secrecy will take more away from me than Parkinson’s ever could.
“I get it,” Elizabeth told me. “It’s tough to carry this…and mostly by yourself.”
With equal measures of generosity and patience, she listened.
“If it were my child, I would want to know,” I confessed.
“Of course. You would want to offer your support.”
She echoed what Tracey has said from the beginning.
“It’s not fair to them for me to hold this. It’s time to have The Talk.”
Elizabeth continues to listen and offers more encouragement as I keep trying to psych myself up for one of the two most difficult conversations I have ever had. The other would come a few weeks later, when I tell my children I have Parkinson’s.
“I bet it’ll help you feel better, too,” Elizabeth said. “You’ve given this a lot of thought.”
“You’d make a great social worker,” I said.
We both laugh.
She thanks me and says, “Let me know how it goes.”
The Talk
For more than 30 minutes, I pace from one side of our rented beach house to the other. When my parents arrive, I put away groceries, organize things on the countertops, and continue to move around. I walk outside and grab beach towels that we have hung on the balcony to dry. I fold and then re-fold them, make multiple trips upstairs trying to calm myself, and pee three times.
As I return to the first floor and meander by once again, my father looks at me.
“Are you okay?” he asks.
My mother, who is preparing lunch, looks up and sights me, too.
I pause.
“I want to talk with you about something,” I say.
My mother stops what she is doing and moves toward the dining area table, where she and I each take a seat. My father comes closer but remains standing behind her, his hands resting on the back of her chair.
Taking a deep breath, I say, “I need to tell you something, but before I do I want you to know that it’s going to be okay.”
“Are you sick?” my mother immediately asks, with a tearful expression that captures what I knew was an already breaking heart. Somehow, she knows.
“I have Parkinson’s disease,” I say.
For a few moments, time and speech slow, like when a boxer takes a blow to the head in the movies. The late morning bright light pushes through the large plate glass window’s salty film to illuminate the agony on my mother’s face.
“My God,” she whispers, covering her mouth with her hand. My father grimaces, and with closed eyes silently shakes his head. I see his grip tighten on the back of the chair, as if he has taken a boxer’s blow himself.
“I knew something wasn’t right,” my mother says. “That’s why I asked you if you were okay after that doctor’s office called.”
She’s referring to a time when someone from a medical practice in Houston called my parents looking for one “Allan Cole,” which I have also written about. See “Going Public with Your Parkinson’s Diagnosis.”
“I’m sorry I didn’t tell you the truth,” I say.
My Dad puts his arm around her and she reaches out to hug me. He puts his other arm around my neck to complete our three-way hug. We hold that comforting position, arm in arm, for a while before we let go and my father sits down.
Then, I slowly take them through the previous months in my Parkinson’s story.
I describe my symptoms, multiple doctor’s visits, the misdiagnosis, the diagnosis, and the prognosis. They ask a few questions, some of them a couple of times. One of them is if I have any pain, and I assure them I do not. Another question relates to my prognosis. I understand. It takes some time for it all to settle-in. Reassuring them reassures me.
I tell them I want to use Parkinson’s to do some good, for me, my family, the Parkinson’s community, and others. I muse about what forms this good might take, telling them I hope to get involved in education, advocacy, and raising money for Parkinson’s research.
As much as anything, I want to be honest with them, to be authentic about my struggles and concerns, to speak realistically about the future. I also want to set a tone of hopefulness and determination. I aim to display a positive attitude about both the present and the future, which I genuinely have and want them to embrace, not just on this day but also in the years to come.
“I’m sorry you have this. I will be strong for you. This will be OK,” my mother says.
“We’ll take this on as a family,” says my father.
We talk for a few more minutes before Tracey and the girls return to the beach house.
A part of me wants my mom and dad to make it all just go away, as they did so many times when I hurt as a child.
The Path Ahead
They cannot make it go away, of course. No one can, as of yet. This may change in my lifetime, and I never discount that possibility, that hope. There are many reasons for hope, including significant scientific progress and new treatments discovered each year. “We know how to treat this disease, and we are on the verge of real breakthroughs,” Dr. T, my diagnosing neurologist, told me. (See “How Did You Know You Have Parkinson’s”)
As I wait for that day, along with 10 million others who have Parkinson’s and the many millions more who offer them love, support, and encouragement, this is what I know. Removing the freight of going it alone—pallets of secrecy, silence, fear, and shame—is itself life giving and peace-filled, more than you might ever imagine possible.
Not only this, but daring to lean on those who love you most, and who pledge their abiding presence, will help you, and them, weather many storms, including Parkinson’s disease, and in doing so will help you discover new strength.
This strength can prompt a new kind of resolve. The resolve to live each day with more immediacy and gratitude, with a keener awareness of life’s fragility and unpredictability, but also its beauty; with an eye newly honed for seeing human suffering and need, and with an unwavering commitment to being present for others while expecting they will be present for you.
I am speaking of the resolve to take on what lies ahead.
Together. Arm in arm. Come what may.
_________
Photo by Tyler Nix on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. 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. His latest book, on counseling people with Parkinson’s disease, will be published by Oxford University Press in 2021. Follow him on Twitter @PDWise.