The University of Texas Tower (Austin)
Naming My Fears
It’s Tuesday morning, a few minutes before a standing 10 o’clock meeting with my boss. My heart beats quickly as I walk back to my office after a third trip to the bathroom. I have rehearsed the conversation I’m about to have with him dozens of times. How I’d let him know about my having Parkinson’s disease. It has been nearly a year since I found out.
Wanting to understand my rights and the University’s obligations, I consulted with an employment attorney who told me the law was on my side. I had no rational reason for thinking otherwise, for feeling so vulnerable. I had always been treated fairly and was confident that would continue. Still, I was afraid.
I did not fear losing my job. My fear rested with the possibility of losing a reputation 20 years in the making, as a scholar, teacher, and administrator, and in a university that I have loved since my childhood in Plano, Texas.
I feared losing the confidence of my boss, colleagues, and students; losing opportunities to grow and advance; losing my standing, if you will, in what I have long understood to be my calling in life.
Many people are naïve about Parkinson’s, including highly educated people; they make misassumptions about what those who have it can and cannot do. This is why many of us, at least for a while, choose to stay silent.
Looking for Guidance
I took some cues from my friend Bret Parker, who learned he has Parkinson’s in 2007, at the age of 38. An accomplished attorney, he heads the New York City Bar Association as its Executive Director. To disclose his illness he wrote a piece for Forbes titled, “The Last Workplace Secret.”[1]
Bret understood both the professional and social risks that come when one lives publicly with a disease like Parkinson’s, and he labored for five years before telling people he had it. I could understand his waiting.
I read Bret’s piece not long after my diagnosis in the fall of 2016 at the age of 48, when I combed the internet day and night for information about Parkinson’s and for personal accounts of those living with it. Wanting desperately to find people living a good life, an active and meaningful life with Parkinson’s, I found hope in Bret’s story.
It would be several more months until we met and before I was ready to follow his lead, but Bret’s honesty and courage inspired and equipped me for revealing my own secret. Through his efforts to raise awareness and money for Parkinson’s research, he inspires me still.
Refining My Purpose
I wanted to use my condition to make a difference, and to connect with others living with Parkinson’s, and to build relationships through our shared challenges. I wanted to get going on all of this, and soon. But before I could do that I had some serious internal work to do on myself. It was ironic, really. Before Parkinson’s, I thought I had my life’s biggest questions figured out. Maybe I had for a time, but this was a new life with a wrinkle, a twist, a curve ball. This new life required a close, second look.
David Brooks has said,
We are all fragile when we don’t know what our purpose is, when we haven’t thrown ourselves with abandon into a social role, when we haven’t committed ourselves to certain people, when we feel like a swimmer in an ocean with no edge…. People are really tough only after they have taken a leap of faith for some truth or mission or love. Once they’ve done that they can withstand a lot.[2]
I had lived contently for many years with satisfactory answers to questions about resilience (what Brooks calls ‘toughness’), my life’s purpose, and my personal commitments; but my diagnosis brought many seemingly settled questions to the forefront of my consciousness. I liken the reemergence of these big questions after Parkinson’s—deep, existential, and pressing—to what you hear people say about a mid-life crisis. In both cases you consider whom you have been and who you want to be.
Before getting Parkinson’s, I had spent much of my professional life thinking, teaching, and writing about resilience and purpose. I urged my students to explore the big questions for themselves, those having to do with who they are, what they believe, and what they are called to do. Seeking my own answers and helping others find theirs has shaped my self-understanding and sense of purpose for as long as I can remember.
Still, despite this personal history, when I found out I have Parkinson’s I felt like that swimmer in “an ocean with no edge.” More accurately, I felt as if I was not swimming so much as trying to tread water. To locate that edge, that guiding boundary, I needed to reexamine things like my ideas about right and wrong, as well as things like how I spend my time to maximize fulfillment and joy. I had to reevaluate almost everything, even as I sought to rely on my “toughness” and renewed commitments to living out higher yearnings.
Eventually, I began to feel like I had new perspectives to draw on, those tied to living with a progressive and incurable disease. I had new insights about vulnerability, hope, purpose, humor, and wisdom. Sharing these insights and helping others explore and answer their own questions, to find their own guiding boundary in an ocean that threatens to swallow them, became my goal. Parkinson’s had become my teacher, and I wanted to share what I was learning with others. That desire gave rise to this blog, PD Wise, among other efforts to use the Parkinson’s beast for something good.
You Do You
Few decisions are more personal than disclosing a medical diagnosis, particularly at work, and especially one that drastically changes your life and risks altering the way others look at you and your future. I would never suggest that anyone should disclose on any timeline other than a personal one. Some people need to speak publicly about their Parkinson’s immediately. Others wait a decade or longer. Some never disclose. Just as the disease presents differently in people, with varying symptoms and degrees of difficulty, and just as it progresses in different ways and at differing rates, so does readiness to speak about it with others. You’ll never find a one-size-fits-all approach.
I waited nearly 11 months before I went public. While I would describe myself as a private person, keeping the secret eventually became too painful. The agony of its ache far exceeded the effects of the disease itself. Also, keeping the secret prevented me from doing things I wanted to do, for myself, my children, and on behalf of those living with Parkinson’s and other chronic illnesses. More important, keeping the secret meant lying to people I love, and who love me.
Secrets maintain enormous power over those who hold them. Over time, their power can prove destructive.
Work to be Done
Getting back to the meeting with my boss….
We have exhausted the agenda when I say, “Luis, I need to share something with you. It’s personal…and I am going to try not to cry.”
His look of curiosity quickly elides into concern as I take a deep breath.
“Last October, I found out I have Parkinson’s disease….”
My voice cracks.
“Take your time,” he says.
After another deep breath, I walk him through the first symptoms, the weeks of waiting after a misdiagnosis, the DaTscan, the whole story up to this point. He listens patiently, nods, and urges me along with kindness and grace. He asks a few questions, which I answer, and offers words of support that will remain between the two of us.
Looking around his office, and seeing his shelves full of books, a framed New York Times op-ed he’d written several years earlier, and a Texas Longhorns football helmet signed by players and coaches, I felt more grateful than ever to do this work…in this place…with these people.
When the conversation ends, we stand up from the table, and shake hands as we slap each other on the back with a half hug.
As I turn toward the door he says, “One more thing, Allan. You might have to remind me about your having Parkinson’s. We’ll both be busy; we’ve got a lot of work to do.”
It’s exactly what I need to hear.
__________
[1] https://www.forbes.com/sites/randalllane/2012/03/12/the-last-workplace-secret/#7370145b62fe
[2] David Brooks, “Making Modern Toughness,” New York Times, August 30, 2016.
[3] Ibid.
Photo by Egidio Leitao
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