The Assignment
The class begins as many do these days, with young faces popping-up on the computer screen. Everyone is muted and it’s quiet, as though we have met on the moon.
David, my close friend and colleague of 15 years, has invited me to speak with college students taking a seminar he calls, “Building a Happy Life.” He has asked me to talk about my experience of living with Parkinson’s, as a way of helping students think about how illness and happiness are not mutually exclusive, and especially about my spiritual path. David recognizes that, for many people, experiences of happiness and contentment remain tethered to their spiritual passions and commitments; and he wants students to have a conversation about this relationship.
The Background
I suppose my background is what led David to tap me for this assignment. Before becoming a professor in social work education, I taught for 11 years in a seminary, and before that, I served as a minister in three different congregations. Moreover, much of my research and writing relates to the intersections of philosophical and theological questions and concerns, on the one hand, and psychological or clinical questions and concerns on the other.
David introduces me to the class, and I share my story of being diagnosed four years ago with young-onset Parkinson’s, at the age of 48. I speak about the actual diagnosis and of an initial misdiagnosis, of remaining silent for nearly a year, of the pain that came with trying in secrecy to adjust to a new life, of fear and anxiety about the future—all of that. I also speak about how eventually I began not only to cope with this illness but to make it part of a rich, meaningful, and happy life.
The Questions
It’s clear that only a couple of the students have personal experience with Parkinson’s, but many of them can relate my experience to others’ experiences of illness—whether belonging to a family member, friend, or themselves.
After I speak for a few minutes, the students begin asking questions, about Parkinson’s, my experience, and how it has affected my spiritual path. Three questions garner particular interest on the part of several of the students: Were you angry? Did you ever ask ‘Why me’? and Did you ever question your beliefs?
A Response
On the first question, I tell them I was profoundly sad to learn I have Parkinson’s, but not angry. Honest. Anger, I say, links to feeling wronged or violated in some fashion, mistreated or hurt by someone; or to see any of these affecting another person whom we hold dear. Any of that is certainly grounds for anger.
But I experienced none of this. Just the opposite has been true.
Before Parkinson’s and since, I have enjoyed good fortune and privilege in my life, as well as having supportive parents, a loving partner and children, compassionate friends, and generous colleagues.
Also, I get to make a living as I teach, learn from, and grow and serve with extraordinary people, every day I go to work—work, incidentally, that I would gladly do for free if I had other means by which to live and provide for my family.
I have also met hundreds of inspiring, decent, compassionate, and dedicated people who live with Parkinson’s, as well as those who support and care for them. Not only this, but I now experience a richness of humanity and a joy for living that, frankly, I never knew was possible before Parkinson’s knocked.
It’s hard to feel angry when considering any of this.
Am I sad? Of course! And occasionally, still broken-hearted. But not angry. As my wife and children will confirm, I frequently cite Mark Twain’s observation about anger. It is “an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured.”
I’m not suggesting that one should never be angry over an illness. Anger is a core human emotion, and we must learn to feel it and express it if we are to let go of it, or, at least, not allow it to harm us. Even so, learning to distinguish between my own sadness and anger has been a great gift. When I’m angry, it’s often the case that I need to turn my anger into sadness, to grieve, and then to move forward.
Another Response
Concerning the second question, asking Why me? is surely understandable when facing illness or other hardships. There have been times in my life when I asked the question myself. However, I do not recall ever asking this question as it relates to my having Parkinson’s. I have discovered that whenever it’s asked, Why me? is rarely about a search for a definitive answer, and more often a cry of pain, a lament over one’s experience or situation, an expression of feeling helpless and vulnerable—all of which is fundamentally human.
Illness can visit anyone, at any time; and eventually, it touches everyone. I became more fully aware of this fact of life as a young minister, standing at bedsides and gravesides, and long before I got Parkinson’s disease. Sadly, illness is simply a part of human existence. It’s also a part of life that can easily be overlooked or even denied as long as we and those we love can breeze through our days with good health. But recognizing illness as a fact of life is different than thinking it singles out certain people, or it’s part of a divine plan or one’s destiny or anything like that.
I don’t know why people get sick when they do. In most cases, it probably relates to genes, environment, and behavior. I do know that while being ill is never intrinsically good, many good things can come about as a result of living with illness.
Like the time I spent with David’s class.
As this class period draws to a close, I am grateful to have the opportunity to think with young, bright minds about these important life questions.
And Another
After class, I realize I didn’t answer the question about how my illness has touched my spiritual beliefs as thoroughly as I wanted to.
I wish I had put it this way.
That we live in sacred, even holy, spaces touched by divine goodness and love, has never felt more true to me. Neither has my awareness ever been keener that this goodness and love endure, especially in the darkest and most painful moments of life.
I have spent decades of life searching for answers to the students’ questions—which have been my questions, too, and still are sometimes. I have spent equal time hoping for glimpses of the divine. The more salient answers and spottings have come with embracing and even appreciating the ambiguity of illness, with accepting the messiness of Why? and, most importantly, in seeking to live in fierce solidarity with others whose lives are touched by illness, loss, or pain, whatever the reasons or causes.
A few days later, still reflecting on this meaningful experience offered by my kind friend David and his bright and thoughtful students, I wrote a poem I call “Faith,” and it includes these lines:
…Some years later came infirmity’s call.
In losses and crosses, there I saw
That stated beliefs never satisfy me,
But actions and love help eyes to see
The sacred is true, for others, for me.
…With keener vision, now I see:
Faith equals what the prophet decreed,
Loving justice, kindness, humility—these three.
In this way, the sacred endures for me.[1]
My parting words to David’s students are that I suppose a happy life is one with space for health and illness, joy and sorrow, answers and questions, and really that any life needs all of these if it’s to be real, not to mention, faithful.
__________
[1] See Micah 6:8, The Holy Bible (New Revised Standard Version)
Photo by Priscilla Du Preez 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, a professor of psychiatry and behavioral sciences at 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, and as a regular guest contributor to the Michael J. Fox Foundation’s Team Fox Blog, writing columns about living well with Parkinson’s. He is the 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 Parkinson’s Disease (Cascade), will be published in 2021. Follow him on Twitter @PDWise.