Silence
One evening, in the fall of 2016, I walk quietly into our dining room, where my backpack rests in a chair. I keep a bottle of Azilect in it, a first-line Parkinson’s medication that I started on when my doctor diagnosed me a month earlier. Unzipping the lower front pocket, I grab the small white plastic bottle with a bright blue label, shake out a single pill, and put it in my mouth.
“Daddy, are you okay?” my 9-year-old daughter, Holly, asks.
A sensitive and perceptive child, I wonder if she knows something’s amiss.
My wife, Tracey, and I have discussed when we will tell Holly and her 11-year-old sister, Meredith, about my Parkinson’s, but I’m not yet even close to being ready. I can hardly tell this new truth to myself.
“I’m fine, Honey. I’m… uh…I’m just taking something for my allergies,” I say.
My heart sinks. The little pill sticks to the lump in my throat.
Worry
Later that night, after everyone goes to bed, I sit in our living room nursing a beer. After a few minutes of staring at nothing in a dim light, I turn on a lamp and begin looking at books I have on disability, which I’ve brought home from my campus office. I teach budding social workers, some of whom will work with disabled people of all ages and in a lot of different settings.
Flipping through one of the book’s pages, my anxious mind gets stuck on the prospects of my girls growing up with a declining, and at some point, disabled, Dad. I wonder how they will feel about that, and whether I will keep up with their active lives.
As Parkinson’s takes a firmer hold on my brain, and my body stiffens and quivers, will I embarrass them?
How will my illness affect them emotionally?
Will I watch them finish college, or get married, or have children from a wheelchair?
Will I be able to provide for their college education, and for other wants and needs?
These questions, and others, haunt me. I still have so much to learn about Parkinson’s.
Disgust
A chapter in one of the books I’m looking through speaks of the fear, and even aversion, that some people have toward those with an illness or disability, and of how this can result in them feeling isolated and rejected. Reading to the end of the first page, my blood pressure rising, I take a deep breath and let out a long expletive as I throw the book across the room.
During this same time I also read Michael Kinsley’s book, Old Age: A Beginner’s Guide.[1] He recounts his own experience with Parkinson’s disease, which began at age 43. I watched him on CNN’s “Crossfire” during my college years and appreciated both his keen intellect and his feistiness, which he demonstrated by going toe-to-toe each night with the formidable Pat Buchanan.
Kinsley recalls a dinner party when, seeing his hands shaking, a well-meaning woman offered to cut his steak for him. I can’t bear the thought of someone infantilizing me in such a way, which follows being moved over to the “disabled” column in the social and professional ledgers, and, too often, leads to being written-off.
Another’s infirmity can make us feel uncomfortable. Discomfort can lead to avoidance.
Shame
But those living with illness or disability may practice avoidance, too.
Weeks later, I sit in my living room again, this time with a laptop. Tracey’s out for an early morning run and the girls have not yet gotten up for school. I pop in my ear buds and hit the play button to watch a video on YouTube. The softness of my recliner folds around me, contrasting with the hard edge against my soul.
As the video begins, a renowned neurologist speaks about his experience with treating Parkinson’s disease.
“I have many patients who feel ashamed to have the disease,” he says. “I tell them, you’ve done nothing wrong that caused you to have it. It’s not something you get because you make poor lifestyle choices or engage in high risk behaviors. It just happens, and for reasons we still don’t know.”[2]
Whether due to shame, fear, or other reasons, too many of us live with Parkinson’s in secrecy, with anger, and in self-imposed isolation, often until physical symptoms can no longer be hidden.
As a result, we suffer in silence.
Alone.
In some cases, for years.
Risk
But we need not punish ourselves in this way. We don’t have to carry this extra burden. We can tell others what we’re facing, including its challenges and our fears, disgust, or shame, even if it’s just a handful of trusted companions or, perhaps, a single one.
Sure, disclosing our condition comes with risks—socially, professionally, and, sometimes, in our most personal relationships. I’d never disregard these risks or minimize their potential impact. Telling someone about any hard news, whether Parkinson’s-related or otherwise, best happens when it feels right to us, and never on a one-size-fits-all schedule.
Even so, carrying burdensome secrets affects us, too. Whether due to having Parkinson’s disease, or to some other hardship, silent suffering takes its own destructive toll.
Freedom
It took me nearly a year to share my diagnosis publically, and I wish I’d done so sooner. The extraordinary people in my life–some of whom I’ve met because I have Parkinson’s, others of whom I’ve known for years if not forever–were ready to stand and walk with me on this new path; and they haven’t missed a single step.
Others who have Parkinson’s and who suffered in silence have told me they wish they’d risked sharing their diagnosis with others sooner, too.
After all, there’s comfort in not having to hide.
There’s freedom in living our truth.
The writer C. S. Lewis put it this way, “I have learned…that while those who speak about one’s miseries usually hurt, those who keep silence hurt more.”[3]
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[1] Michael Kinsley, Old Age: A Beginner’s Guide (New York: Crown, 2016).
[2] Many scientists link Parkinson’s disease to a genetic predisposition and exposure to certain pesticides. Other risk factors include repeated head trauma, such as occurs in certain sports.
[3] W. H. Lewis, Ed., “To Sir Henry Willink,” Letters of C. S. Lewis (New York: Harcourt, 1966) 483.
Photo by Rémi Walle 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