Still Got It declares the large orange font placed off to the side of his left shoulder. A handsome and fit older man, he’s just pulled a full bag of groceries from the back of his SUV, with his taut chest, thick neck, and right arm semi-flexed. If there were still any doubt, his sculpted calves have “athlete” written all over them. He smiles in an effortful Parkinson’s way.
Above his shoulder it reads, Still got drive. Still got dignity. Still got dreams.
In smaller text, just below the knees, he introduces himself and shares the remainder of his message: “My name is Phil, and support is there for us if we need it.”
Hi, Phil, I say to myself, I’m all for support, but let’s talk.
Turns out it’s an ad for Rytary, an extended release form of carbidopa/levodopa, the gold standard of Parkinson’s treatment and a medication that I and millions of others with Parkinson’s take. Taking it can allow you to move, literally, when Parkinson’s makes you feel like a stone statue; and it gives you an energy boost when fatigue grips every cell in your body. I’m grateful for this medicine.
Nevertheless, Still Got It irritates me. It irritates me because it’s linked to Phil’s drive, dignity, and dreams—things that lie at the heart of being human, whether you live with an illness or not. Do those at Impax Laboratories, the makers of Rytary, believe that as Parkinson’s progresses and takes our ability for movement, it also takes our determination, our self-respect, and our hopes for the future? Does Phil believe this? And if so, does he see Rytary as the solution?
I’m learning that too often those living with illness, including my brothers and sisters who have Parkinson’s, succumb to the assumptions, descriptions, prescriptions, and expectations of the healthy. We defer our “insider” perspectives on illness to those of “outsiders,” meaning those who are not yet ill.
Philosopher Havi Carel, who lives with her own serious illness, a chronic pulmonary condition, observes that “Being a good ill person, a good patient, is conforming to the expectations of the healthy, not to be offended or polluted by your illness. When you begin to get praise for your behavior, then you know you have achieved the status of a conformist. An ill conformist conforming to the demands of the healthy majority, who cannot, will not, wills not to see the fate that awaits us all.”[1]
Impax Laboratories places the norms and expectations of the healthy front and center in its ad. Calling on us to conform.
Here’s what I want to say to Impax Laboratories, and especially to Phil.
Phil, you look like you are faring well with Parkinson’s, and that in itself inspires me. But here’s what I want you to know about me.
I have to work harder to move, and to sleep, and to do other things I once took for granted. But my dreams have never been more vivid or clear: to live a meaningful life; to make contributions to the common good; to be a good husband, dad, son, colleague, and citizen; to dance with my daughters at their weddings. And while I have the same types of insecurities that every human being has, including some tied to having Parkinson’s, I’ve never felt more centered in who I am or more accepting of myself, so my dignity is intact. And, you think Parkinson’s has taken my drive? Well, as my feet hit the floor each morning, and I power on my laptop to start a day of writing, and I lace up my shoes to go for run, and I get on my bike to ride with my daughters, and I say “Good morning” to a class of social work students at The University of Texas at Austin—I’m as driven as ever to live a full, purposeful, productive, generous, compassionate, and meaningful life.
Please tell Impax Laboratories to tell their ad agency all of that.
One more thing, Phil, and please share this, too.
Never confuse health, ability, or functioning with determination, self-worth, or aspirations. Never mistake what we can or cannot do for who we are. Never allow illness take hold of your humanity. Because when you can no longer drive that SUV, or lift those groceries, or inhabit that chiseled body, you’ll still be you. You’ll still have value. You’ll still be human.
Maybe more human than ever.
It’s time for my next dose of Rytary.
__________
[1] Havi Carel, Illness (New York: Routledge, 2013), 67. Carel is paraphrasing the insights of sociologist Irving Goffman.
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. 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