Loss
Sixteen words changed my life. Spoken in one sentence on October 26, 2016, these words came from the mouth of a man I had only just met.
I was sitting in Dr. T’s exam room at St. David’s Medical Center in Austin, Texas. Located less than a mile from where I live, it is about halfway between my home and The University of Texas at Austin (UT), where I work as a professor and academic dean in the Steve Hicks School of Social Work. This professional work frequently places me in positions of power, influence, and control. I am often the expert in the room, the one seated in the helping chair, and not the one awash with anxiety attached to feeling so exposed and vulnerable.
Dr. T was sitting at a small desk, focusing on me in his intent, serious way. I would come to know this look well, but at the time I was frantically searching his face, trying to predict what he was about to say before he said it.
A part of me already knew. After all, my primary care doctor had referred me to him a month earlier, and I’d filled the time since with Google searches and intensive reading on medical websites. My symptoms were clear enough once I started paying attention to them.
But another part of me, the bigger part, would not allow myself even to guess what he might say. I was only 48 years old and had always been healthy. I had two young daughters to raise with my loving wife. Together, we had found the sweet spot in my career, we had a bright future, we were making lots of exciting plans…and then he said it.
“What worries me is that I think you are in the early stages of Parkinson’s disease.”
Disease
More precisely, as I would learn, I had young-onset Parkinson’s, a diagnosis given to those under the age of 50.
A progressive neurologic disease, Parkinson’s involves the loss of dopamine, a neurotransmitter in the brain that mainly affects the body’s capacity for movement but also the ability to regulate one’s mood, which may result in anxiety, depression, or sleep disturbance. About half of people with Parkinson’s experience depression and around 40% will have anxiety. By the time symptoms first appear, 50-80% of a person’s normal dopamine supply has already been lost, which means the disease process begins many years, even decades, before you know you have it. Though not a fatal disease per se, Parkinson’s gets worse over the course of many years and typically leads to some degree of disability.
A Good Life
Before my Parkinson’s diagnosis I had always been a picture of good health. I ate well, got plenty of sleep, drank alcohol moderately, and rarely missed a day of vigorous exercise. The most serious illness I had faced was the flu. Sensitive and hopeful by nature, I also cared deeply about inequity, injustice, and people who struggled—those living on the margins of health, power, status, or hope. For over a decade I taught seminary courses and, more recently, social work courses about these and other personal and social ills, aware of my privilege and good fortune; and I wrote articles and books, too, hoping to be a voice of constructive change.
I also enjoyed the blessings of family: my wife of 27 years, Tracey, and our two daughters, Meredith and Holly. The girls were 10 and 8 when I received the diagnosis and I had always lived with deep gratitude for the gift of parenting them.
Before Parkinson’s, life was good.
Surprising to me is that, three years later, I still describe myself and my life in these ways. Parkinson’s has not changed or taken any of it.
But the disease has changed me.
Before Parkinson’s I was fiercely private and independent. I lacked a willingness to access my deeper and more authentic emotional life, and I barred others’ access, too. I rarely opened up about my feelings or my needs, even with those I cared for most: Tracey, my parents, and my closest friends. Like a lot of people, when facing personal challenges I put my head down and plowed through them. I kept my nose to the grindstone, bit the bullet, sucked it up; and usually I did so alone. It had always been this way.
I wasn’t a tough guy. I didn’t embrace a hyper-masculine bravado; in fact, I rejected these qualities. I taught courses and wrote books on the social constructions of gender and urged students and readers to consider and even try on broader understandings, including “masculinities.” But I found it difficult—or more accurately, excruciatingly uncomfortable—to admit my needs, share them, or to lean on other people for support.
It was as though being vulnerable equated to weakness, as if disclosure meant becoming an object of pity or suffering a loss of respect.
As a graduate student, I came under the spell of Ralph Waldo Emerson, a 19th century champion of individualism, who said “the great man is he who in the midst of the crowd keeps with perfect sweetness the independence of solitude.” In large part, I’ve lived my life accordingly.
I always hoped to become a great man.
For several months after my diagnosis, I suffered in silence, but this ultimately added to the severity of my pain because I felt so alone. The image of being stuck in the middle of a road, and knowing that a bus is coming but not exactly when, weighed on me. A lot. After nearly a half century of enviable health and youthfulness, I now had an old person’s disease in middle age. I was paralyzed when thinking about the future, painfully self-conscious about my physical appearance, which I assumed would soon reveal my condition, and, other than my doctors, two close friends, and, by chance, my massage therapist, the only person who knew, for months, was Tracey, whom I had sworn to secrecy.
I felt like a fraud.
I have made a career of teaching my students to prize the strength of vulnerability and the freedom of living with authenticity. It takes courage and risk, I often said, but it’s the path to true freedom and peace. I believed this and still do, but early in my Parkinson’s journey, I could not practice what I preached.
A Better Life
Then, several things led me to disclose my disease publicly about 11 months after the diagnosis.
One was my inability, in my silence, to do anything positive with Parkinson’s, which I desired and believed would be a key to finding meaning in having it. In order to do some good I had to be public. Another impetus for disclosure was the growing burden of my inauthenticity, the most difficult part being the message my silence would someday send to my students and, especially, to my children, whom I’d taught that honesty, integrity, and truth—particularly when facing adversity—are hallmarks of a life well lived.
Let me stress here that there are good reasons not to be public with an illness, and I do not judge anyone who keeps his or her condition private. In my case, however, the secrecy was destroying me.
Since becoming public, I have discovered that there are others like me, many others, in fact; and I am learning valuable lessons from living with this disease.
One key lesson is that people need each other in order to thrive, especially when we struggle. We are, in truth, fiercely interdependent, and living authentically, though it comes with risk, is crucial because it is so fundamentally human. As Camus put it, “But above all, in order to be, never try to seem.” An authentic response to illness, which includes being vulnerable with and leaning on trusted others, is a path to healing, peace, and even newfound joy.
I am now a 51-year-old with Parkinson’s and life is still good. It’s different. Less certain. Accompanied by new challenges. But it’s still good. What has it been like for me? How is it going? Thus far: mercifully slowly, the way all of the doctors assured me it would. In the three years since that fateful meeting with Dr. T, my physical challenges have become more noticeable and bothersome, at least to me. But they are not yet limiting. I have a tremor in my left index finger and left foot, which spreads to my arm and hand when I am cold or my adrenaline is up; and I have increasing stiffness in my left arm and hand. Also my left arm doesn’t hang or swing naturally when I stand, walk, or run; my left leg slightly drags sometimes, especially when I’m tired; and my ability to move fluidly ebbs and flows.
It seems safe to say that I will not realize my dream to pitch for the Houston Astros.
I have also lost a lot of my sense of smell; and I miss that…a lot. Some days I feel more fatigued than I used to, which my doctors point out might have as much to do with being in my 50s as it does with Parkinson’s, and I get painful muscle cramps in my toes, feet, and legs—a condition called dystonia and a common Parkinson’s symptom.
As my friend Michael Westphal puts it, Parkinson’s makes you uncomfortable in your own body.
Still, I can do what I have always done. I swim and play basketball with my daughters, taxi them to school and to their acting, dance, piano, and art classes, and help with homework. I meet the demands of being a university administrator and professor, walk to meetings across the UT campus, teach my courses, and at home I do housework and yardwork. I run long distances and work out hard at the gym. I devote time and energy to the Michael J. Fox Foundation for Parkinson’s Research and serve on the Board at Power for Parkinson’s, an organization in Central Texas, raising awareness and funding for Parkinson’s research and care. I share an active, fully partnered life with my wife.
Limitations will come. That’s the way Parkinson’s works.
By and large, I’ve been able to calm my fears of a rapid physical decline because of my doctors’ reassurances and the information available about the disease. What I have found to be a far greater challenge is dealing with the sadness, fear, and worry that come with an uncertain future. I was someone who had always been in control of my own body, had always been able to understand it, more or less. Parkinson’s has altered that, too, and it is difficult to convey the enormity of this change.
Lessons
Recently, I had the opportunity to run the New York City Marathon, my second marathon since learning I have Parkinson’s three years ago. I’m still discerning what this extraordinary experience means to me, and what it is teaching me; when my family, many friends who are like family, my fellow Parkinson’s journeyers, the Team Fox community, and a sea of anonymous faces and voices buoyed me with their chorus of support. Though I think of myself as one who can, if given enough time, find adequate words to express my thoughts and feelings, I admit that I am still working to find the words in this case.
But as I ran through a remarkable city on a picture perfect day, with inexpressible joy prompted by seeing so many I love along the route, I reflected, as I tend to do, on some things I am learning and want to share.
Whether you struggle with Parkinson’s disease, another chronic illness, or any hardship, I hope you will consider some of these lessons.
The beginning of your journey is difficult but arguably the most crucial part.
The thoughts and feelings you are having are normal and you will learn to tame them, especially as you share them with trusted others.
Your hardship can be an opportunity for growth, wisdom, and newfound meaning and joy.
We live as if we know a lot about the future when we do not, and all we have is today.
Living honestly and authentically with your struggles each day will make you stronger and more resilient, offer you peace, and can inspire other people.
There is great strength in vulnerability, and all of us are vulnerable.
You need others to support you, and they need you, too.
A serious illness certainly presents sizable challenges and losses. But it can also lead to unexpected gains. For me, these gains have included deeper and more authentic relationships, reconciliation, personal growth, wisdom, deep gratitude, and newfound purpose, hope, and joy.
In this way, Parkinson’s is my teacher. Its lessons unfold each day, little by little, through living life, enduring its setbacks, recognizing its beauty, living out loud with Parkinson’s, and nurturing myself and others through more vulnerable and authentic love.
As the ancient Greek philosopher Epicurus suggests, “Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.”
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Photo: Andre Costantini
*Team Fox is a grassroots fundraising community of the Michael J. Fox Foundation for Parkinson’s Research
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin. 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: @PDWiseBlog