A NEW KIND OF LIFE
On October 26, 2016, I was diagnosed with Parkinson’s disease. I was 48, with a family I loved beyond measure, work that mattered to me, and plans that suddenly felt uncertain.
Today, ten years later, I still have all those things. Including the uncertainty.
I have spent a decade learning how to live with an illness I never saw coming; one I can neither predict nor avoid. Some days, I manage it fairly well. Other days, it requires more patience than I have. Experience has helped me manage it better, though it has not made me an expert on anyone else’s Parkinson’s. I’m barely an expert on my own.
Still, an anniversary invites reflection. Here are ten things these years have taught me.
LESSONS
1. Fear gets more authority than it should.
At diagnosis, fear began telling me the story of the rest of my life. It emphasized discomfort, dependence, and decline. It said little about friendships, accomplishments, laughter, or the pleasure of making music with people I enjoy.
I had good reasons to be afraid. I also gave fear more authority than it deserved.
Much of what has made the past decade so meaningful and transformative never made it into this fear-based account.
2. Ordinary days are worth noticing.
When you worry about losing parts of your life, you begin to recognize how much you value things you once hardly noticed.
Moving comfortably. Sleeping well. Having enough energy to do what you want. Being absorbed in a conversation rather than distracted by your body.
I do not notice these gifts every time they come. I still get preoccupied with deadlines and irritated by inconveniences. But more often now, in the middle of an unremarkable day, I recognize something I would miss terribly if it were gone.
I try to stay with that recognition.
3. Acceptance requires practice.
I would like to say I accepted Parkinson’s years ago and moved on. In reality, I keep encountering things that require a fresh round of acceptance.
A need to take more medicine. Less stamina on some days than I expected. A more pronounced tremor when my adrenaline kicks in.
I can spend considerable effort wishing the circumstances were different. Eventually, I have to decide what to do within them. Acceptance helps me get to that decision. Some days, it takes me longer than others.
Gratitude does not mean no complaints.
I appreciate my life. It’s marked by loving relationships, meaningful work, access to care, financial resources, and opportunities many people don’t have. I know these things matter.
I also get tired of having Parkinson’s.
My deep gratitude for an abundant life doesn’t eliminate my frustration. Neither does frustration erase gratitude. I have learned to make room for both. One reason is that people closest to me shouldn’t have to wonder whether they are getting an honest answer when they ask how I am doing.
Sometimes the honest answer is, “It’s a tougher day today.”
I can say that and still love my life.
5. Being productive is only one part of being a person.
I like setting goals and working toward meeting them. I also enjoy helping solve a problem, supporting a colleague’s growth at work. Having something worthwhile to do remains a staple motivator of my behavior. My professional life has given me abundant opportunities for all of this.
But it is easy to begin measuring my worth by my productivity or usefulness.
Parkinson’s curbs that tendency.
I would never tell a loved one their value depends on how much they accomplish or produce. I am trying to extend that same understanding (and grace) to myself.
6. Love lives in daily details.
Illness gives practical expressions of love weightier significance — for example, patience with a change of plans, attention to something that would make the morning easier, willingness to listen to a worry that has come up before.
Receiving care has made me think more about how I offer it.
Am I paying attention? Am I asking what would help? Am I noticing what the people around me are carrying?
Having Parkinson’s does not excuse me from those responsibilities. If anything, it gives me more reason to take them seriously.
7. It’s never too late to try something new
It turns out older dogs can learn new tricks. My daughter Meredith helped me learn this three years ago, at age 55, when she challenged me to take bass lessons and, subsequently, to learn to sing. That challenge led me to join three bands, play numerous gigs, and open a music school that serves typical and disabled people who learn to play music together (Every Body Jams).
We assume there are things we cannot and should not do. Music could easily have been one of those things for me.
I am glad it wasn’t.
Playing bass, writing songs, and being in bands have brought friendship, challenge, and pleasure into these years. I enjoy having something to work at simply because I want to get better at it. I enjoy hearing what happens when people listen closely to one another and find their way through a song.
Work and other responsibilities are still waiting afterward. There usually will be. I am learning to let it wait.
8. I assume I know more about others than I do.
Living with symptoms that others may not notice has made me more aware of how much any person can be managing beneath the surface.
We see someone’s behavior and supply an explanation. We decide they are inattentive, unfriendly, unmotivated, or unreliable. Sometimes we make those judgments with very little information.
I have made them myself.
My own experience gives me a reason to pause. There may be pain, exhaustion, fear, or something else I would understand better with more information. I want to give people the benefit of that possibility.
9. Today is what we have.
Planning is useful. Trying to experience every possible future difficulty in advance is not.
I can slip from one into the other without noticing. A practical question about the future becomes an afternoon spent imagining losses that have not happened.
When I catch myself doing this, I try to return to what actually needs my attention. Often, it is something manageable, such as a decision, a conversation, a task for today.
The future will ask things of me. Today already has enough.
10. I still get to make plans.
Parkinson’s has given me reasons to think carefully about the years ahead. It has not taken away my desire to have them.
I want more time with my family and friends. More opportunities to teach and write. More music. More chances to do something useful and to enjoy something for no particular reason.
I know plans may need to change. That has always been true, though I feel it more keenly now.
I keep making plans because I have things to look forward to. After ten years, that feels worth saying.
LETTING TOMORROW COME TOMORROW
I wish I could report that these lessons have made me consistently patient, present, and wise. They haven’t. I still worry too much, overfill my calendar, take life for granted, and forget things I have written about knowing.
But I have had ten more years with people I love. I have watched my daughters grow and become even more amazing. I have done work I care about, with people I love, and found new things to care about along the way.
I wanted those years when I was diagnosed. I feared what they might hold.
Now I have lived them. Their difficulty is still far outpaced by their joy. I wouldn’t have wanted to miss them.
Parkinson’s has brought the greatest challenges of my life. It’s also brought to me life’s most meaningful, joyful, surprising, and enduring gifts.
Wendell Berry urges that human beings “let tomorrow come tomorrow,” for “not by your will is the house carried through the night.”
I continue to be carried by others’ love, generosity, compassion, support, and care. I look forward to what tomorrow and the next decade may bring.
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Allan Cole is Dean of the School of Social Work at The University of Texas at Austin, where he also serves as the Robert Lee Sutherland Chair in Mental Health and Social Policy, the Bert Kruger Smith Centennial Professor in Social Work, and as Deputy for Medical Humanities and Technology and Professor of Psychiatry and Behavioral Sciences at the Dell Medical School.
Diagnosed with Parkinson’s in 2016 at the age of 48, he is the author or editor of 15 books on a range of topics related to chronic illness, bereavement, anxiety, and spirituality. His latest books include Lyrical: Poems that Could Become Songs (Resource Publications), co-authored with his daughter, Meredith C. Cole, Jumping to the Skies: Additional Lessons from Parkinson’s Disease (Cascade), and Riding the Wave: Poems (Resource Publications). Other recent books include Discerning the Way: Lessons from Parkinson’s Disease (Cascade), In the Care of Plenty: Poems (Resource Publications), and Counseling Persons with Parkinson’s Disease (Oxford University Press). With filmmaker and his creative partner Vanessa Reiser, his documentary “The Only Day We Have” aired in April of 2024 on PBS. You may watch it here.