Future Docs
The 50 or so youthful faces begin to appear on my laptop’s screen just before 8:00 a.m., all of them belonging to first-year medical students. Their instructor and my University of Texas colleague, a neurologist, has spent several weeks introducing these students to basic neurology and neurologic illnesses. Having invited me to speak with them just prior to their final exam, to share my story of living with Parkinson’s, he has noted that I will be the first “real patient” they have met in the context of their medical education.
No pressure there.
Seeing several of them take sips of coffee or Diet Coke to help prop open sleepy eyes, I begin recapping my story.
It started with a slight tremor in my left index finger, which led to visiting my primary care doctor… Next came a misdiagnosis by one neurologist before receiving an accurate diagnosis from another… Then came nearly a year of life in the Parkinson’s closet, before finally telling my parents, children, and colleagues….
Speaking of the newfound freedom that followed, and of my commitment to trying to tame the Parkinson’s beast and use it for good, I then offer a few words of wisdom to these budding MDs. Some of that wisdom comes from friends, whose input I had solicited prior to meeting with the class.
“If I’m your patient, focus not only on the dopamine levels in my brain, but also on whether I will dance with my daughters at their weddings. Focus not merely on my symptoms, but on my passions and contributions. See me as someone living with Parkinson’s and not as a person defined by it.”
Several of the students nod their heads, and so does my colleague as I continue.
“You are an exceptionally gifted group of people that will have opportunities to make a difference in people’s lives that not many of us ever have. So, do not leave here knowing merely how to treat disease. Leave here knowing how to treat human beings with stories to tell and with new chapters left to write. Only then will you have an exemplary medical education.”
Presently Hopeful
A few days later, having reflected on our time together, I realized I was speaking to those students about hope. People with illnesses such as Parkinson’s want and need to have hope; and our physicians have the opportunity to participate in our search, even to be a conduit for it, as they humanize their care.
Wendell Berry puts it this way in “A Poem of Hope.”
It is hard to have hope. It is harder as you grow old,
for hope must not depend on feeling good
and there is the dream of loneliness at absolute midnight.
You also have withdrawn belief in the present reality
of the future, which surely will surprise us,
and hope is harder when it cannot come by prediction
any more than by wishing. But stop dithering.
The young ask the old to hope. What will you tell them?
Tell them at least what you say to yourself.[1]
I tell myself I am a hopeful person by nature, and this is true. But I think I aspire to the virtue of hope as much as I embody it or live tethered to its power. I am hopeful in the way that Kierkegaard conceived of it, namely, I can see possibilities and envision a future.[2]
I’ve always been this way.
On the one hand, as Wendell Berry has taught me, I try hard to live mostly in the present because the future does not exist; the present is what we have. On the other hand, I recognize that, throughout history, persons facing illness, disappointment, loss, violence, poverty, discrimination, and tragedies of many sorts have pointed to the ability to see better possibilities—to hope—as the close ally to perseverance and even survival.
To hope in the face of despair prevents us from succumbing to darkness. Living in the present as if you have a future, one marked by a meaningful life that only you can live, produces energy and resolve in the face of current challenges. Parkinson’s disease has prompted my re-examination of hope, not because I have lost a measure of it but because I want to make damn certain I understand it and that it has substance and weight.
A Hopeful Future
What a difference four years can make. Since my diagnosis in the fall of 2016, I have gone from being heartbroken, blanketed with anxiety, and assuming my life was essentially over at the age of 48, to recognizing that in some ways life has just begun. I have gone from despair to hope. Now, speaking to future doctors about my experiences with Parkinson’s and my hopes for the future—for me and 10 million others—well, this makes my heart sing.
What was so lovely about this experience with these students is that the present and future collided. I caught myself several times wondering if one of them would, in a few years, discover a new Parkinson’s drug, or a new way to use deep brain stimulation, or find some treatment not yet even thought of, such as the Holy Grail of disease modifying therapies that stop the beast in its tracks.
I caught myself thinking about an exciting future that will surprise us.
I caught myself experiencing hope.
__________
[1] Wendell Berry, “VI.”, Leavings, Berkeley, CA: Counterpoint Press, 2010, 91. Though untitled, many refer to this poem as “A Poem of Hope.”
[2] Søren Kierkegaard (1813-1855) was a Danish philosopher who wrote extensively about ethics, religion, and what today would be called psychology. Often identified as a forbearer of existentialism, I learned much about his perspective on hope from my colleague, David J. Gouwens. See Kierkegaard as Religious Thinker, Cambridge: Cambridge University Press, 1996, 154-155.
Photo by JOHN TOWNER 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 books, Counseling Persons with Parkinson’s Disease (Oxford University Press) and Discerning the Way: Lessons from Young-Onset Parkinson’s Disease (Cascade), will be published in 2021. Follow him on Twitter @PDWise.