The Phone Call
I am in the middle of getting a massage when the phone rings. My doctor had suggested this given the stiffness in my left forearm, wrist, and hand. Normally I would have the phone turned off, but nothing about my life on this day feels normal. I am anticipating this call from my neurologist, Dr. T., and I want to get it over with, to have confirmation of something I already know in my gut.
My massage therapist excuses herself from the room.
“Hello,” I say.
“Hi Allan. This is Dr. T. We got the results from the scan, and, unfortunately, it confirms what we discussed. You do have Parkinson’s disease.”
Silence.
“I see…. Well…what do I do now? I say.
“Like we discussed, take your medicine and come see me in a month,” he says.
The call ends and I place my phone back on the small table, next to my glasses, wallet, and car keys. I climb back on the massage table in only my boxer shorts and get under the sheet. I welcome its warmth against my chilled soul. Meditative music plays softly behind my head. A small candle that I’m sure smells good burns beside me. Parkinson’s has already taken much of my ability to smell. Maybe it’s vanilla-scented, which I love; and, I think to myself, before I leave, I’m going to put my nose really close to that candle. Lying on my back, I stare at the ceiling with my hands under my head. I’ve had fantasies about Dr. T’s call going differently than it did, and yet I’m not surprised by the news.
I say it in my head in different ways: I have Parkinson’s disease. I have Parkinson’s disease. I have fu%#ing Parkinson’s disease.
I invite my massage therapist back into the room, but echoes of the phone call are still in my head.
What do I do now?
Accessing Myself
I have always been a doer, and a thinker. In fact, I’ve lived as though I can do or think my way toward achieving almost anything; and it’s often worked. The challenge has been to allow myself to feel. Not to feel for others—I’m pretty compassionate and empathic—but to feel for myself; to feel my own losses, disappointments, and fears; and especially to risk being vulnerable enough to share them. Access to these feelings has always been restricted, if not to myself, certainly to others. My wife Tracey pointed this out to me more than 25 years earlier. Having Parkinson’s would change this. It would increase my tolerance for finding and sharing my more difficult feelings.
Dostoevsky said that, “The mystery of human existence lies not in just staying alive, but in finding something to live for.”[1] For months after my diagnosis, merely staying alive consumed me. Naively assuming I would soon approach a kind of Parkinson’s cliff, only to fall off it into the abyss, I spent many days and most nights obsessed with self-preservation. I read about the latest research, evaluated the most effective medication protocols, located the best centers of care, and explored various exercise programs, diets, and approaches to self-care. These efforts are valuable and I still spend time on them, but initially they rose from a place of intense fear and desperation. This meant I fixated on maintenance, and not growth; on the future, and not the present; on staying alive, and not on living.
In fact, I needed to rediscover what I would live for.
What and How
Early one morning, I watch the sunrise as I run around Lady Bird Lake, near my home in Austin. Struggling with this fear and desperation, knowing that my life will include Parkinson’s disease, I ask myself two questions. What matters most to me? and How do I want to spend my time?
I realize that what matters most are being a reliable and ethical person—as a husband, father, son, friend, colleague, neighbor, and citizen—and furthering compassion, justice, and love. I realize, too, that I want to spend my time doing something good with Parkinson’s, such as educating, advocating, and writing about my own Parkinson’s journey in order to build solidarity and form deeper connections with others.
I needed to name it as explicitly as I could. After all, it’s what I’m living for.
Tell Me
Life changes with a chronic illness, but a life with Parkinson’s is still a life. It simmers with challenges, some of which are significant, but amid these challenges it also boils over with opportunities—new opportunities for meaningful, rewarding, compassionate, and generous experiences and relationships, within the Parkinson’s community and beyond.
If you haven’t yet done so, I urge you to get going on your new life road. Reconnect, recommit, renew, and remind yourself of your passions, your dreams, and your purpose as best you can figure it out for now. Everyone is on the clock—every one of us. Keep this in mind.
Finally, as you wake each day and make a choice to get up and live, consider the words of the poet Mary Oliver, “Tell me, what is it you plan to do/ With your one wild and precious life?”[2]
__________
[1] Fyodor Dostoevsky, The Brother’s Karamazov (New York: Bantam, 1984) 339.
[2] Mary Oliver, “The Summer Day,” from House of Light (Boston: Beacon Press, 1990), 60.
Photo by Pexels
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: @PDWise