Changes
My friend Joe and I sit across from each other at a small table in a local coffee shop. We meet there every so often to catch-up with one another amid the quick paces of active lives. After a few minutes of talking about baseball, work, and family, Joe leans in and asks, “So, what’s most difficult about having Parkinson’s? I mean, what’s the biggest change for you?”
To say that Joe is direct is like saying Texans enjoy barbecue.
As I enjoy what is left of my now faint ability to smell and take-in the aromas wafting through the air, an internal voice considers responses to Joe’s question.
Stiffness, slowness, labored dexterity, poor sleep, fatigue, knowing I have to take medicine four or more times a day for the rest of my life, managing these medicines’ side effects, wondering if I can work until retirement age, worrying about the uncertainty of my new life—all of these changes come to mind. They have since that late October day in 2016, when, at 48 years old, I learned my diagnosis.
Insights
Then, it hits me.
I look up and clear my throat.
“The most difficult part…is living with intense feelings of loss,” I say.
Joe nods and takes a sip of his coffee.
I say, “Your body doesn’t function like it used to. You do not feel as well as you once did. A sense of your overall well-being wanes. You have to let go of certain plans you have made for the future; or at least you have to reformulate them. You worry about burdening those you love most. You feel like you are living on borrowed time…and you know most of this will only get worse.”
Again, he nods.
“It’s like mourning a loved one’s death…but it’s the death of your former self. Parkinson’s makes you have to figure out how best to live with that,” I say.
Steam blows forcibly from an espresso machine before tapering to a gurgle.
“How do you do that?” Joe asks.
I have spent my professional life pondering this question, the question of how best to mourn.
As a doctoral student, I wrote a dissertation on elegiac poetry as a resource for complicated mourning. The poets, as Heidegger recognized, “reach into the abyss” to say what is true. For nearly two decades since, I have taught courses on loss and bereavement for budding therapists, ministers, and social workers. I have written articles on the subject and a book as well, recognizing that, whether tied to illness or to a multitude of other factors—spouses, children, friendships, careers, dreams, or something else—losses eventually come to us all and we must find ways to live in their presence.
I am acutely aware of this universal human experience now. I live with it daily; so do most people who have a chronic illness. As Anne Lamott describes this living, “It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”[1]
Sojourning
Returning to Joe’s question, this is what I have learned about living with loss.
We mourn the loss of someone or something precisely because we have loved it; found meaning in it; derived pleasure from it; felt secure with it; and allowed it to become an integral part of us—a part of our identity.
As a result, we need never seek to forget, minimize, discount, or sever emotional ties with our losses. To do so is to deny, if not dishonor, both what we have lost and a part of ourselves.
Instead, we can maintain these ties and nurture them in new ways. We do this by finding a new emotional space for what we lose. Speaking metaphorically, this space may hold our memories, gratitude, learnings, what we impart to others, our motivation to live more intentionally, or something else that keeps us firmly in relationship to our loss.
We can move our losses into this space, hold them there, and live consciously in their presence. We can sojourn with them; that is, stay with them temporarily, when we want or need to. Doing so allows for remembering our losses, but also forming and nurturing different, but still life-giving, relationships with what or whom we have loved.
Life endures amid our losses and illness. This I am learning, too. In the face of physical challenges, future uncertainty, questionable well-being—in the face of persistent losses—life still beckons us unceasingly to invest fully, love deeply, mourn actively, and never to opt for less.
As sojourners we learn, limp and all, how to dance again.
_______
[1] Anne Lamott, Plan B: Further Thoughts on Faith (New York: Riverhead Books, 2005), 174.
Photo: Upper Falls, Letchworth State Park, New York
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: @PDWiseBlog