June 20, 2020
Dear Will,
I enjoyed meeting you recently, though I wish it were for reasons other than we share a diagnosis of young onset Parkinson’s disease.
You mentioned that you are struggling with how best to cope with your illness, especially in light of being a single father of three young children. I can empathize with your burdens.
Every now and then, it hits me, too. I have an illness for which there is no cure. This thought no longer consumes me. Not now. For the first year or so after my diagnosis, though, it did. I thought about Parkinson’s almost constantly—day and night. I even had dreams about it.
It is better now, but Parkinson’s still never leaves my awareness. My body reminds me of its slowly tightening grip every time I move. Even though the medicine works like a charm, and I am grateful it does, I never feel Parkinson’s-free. I know you can relate to this experience.
So every now and then, it hits me: Progressive. Degenerative. Incurable. Parkinson’s.
Evidently, a similar realization hits you. Given that you received the diagnosis less than a year ago, I understand you being, as you said, full of questions.
When we met, you asked me one of those questions that I have given more thought. How do you deal with knowing you are going to have this disease for the rest of your life?
I think I understand where the question comes from. In fact, I asked it myself back in the fall of 2016, when, at age 48, Parkinson’s took-up residence in my brain.
Actually, Will, I believe that eventually we will have a cure for Parkinson’s; and I would not bet against it happening in our lifetime. As you may know, we are close, very close, to significant breakthroughs. Smart people I trust—doctors, researchers, PWPs [1] alike—tell me this; and they are straight talkers. Therefore, I help raise money for a cure. I try to educate people who can help with efforts to find a cure. Around the world, 10 million people clamor for a cure and I am one of them.
Let me be clear. By cure, I mean medications or other interventions that allow us to live symptom-free, which is not the same thing as eradicating the disease process. Oh, I hope for this, too; believe me. But I’ll settle for living symptom-free for the rest of my life.
At the same time, I cannot base my happiness, or my inner peace, on there being a cure for Parkinson’s. Basing my happiness on finding a cure would mean wasting my one and only life, and blowing opportunities to experience joy, meaning, and purpose each day with those I love. Looking over the horizon inevitably takes my eyes away from beautiful, sacred, and life-giving experiences and humans that dwell right in front of me.
What is the alternative?
For me, it helps to balance the energy I give to finding a cure with energy I give to finding ways to heal. By healing, I mean restoring and preserving a sense of wholeness and personal integrity, even as the Parkinson’s beast indwells.[2] You can heal without having a cure. I have learned this from Parkinson’s.
For me, healing begins with hope, with believing that Parkinson’s has invited me to make a persistent, stubborn commitment to being hopeful. Each day, I pledge my hopefulness, saying to myself, sometimes aloud,
I am grateful for another day.
I will do my best to make it good.
I will focus on my strengths.
I will be hopeful.
My choice to begin each day this way follows from a belief that hope helps me savor life in the moment, today, and to recognize that today is all any of us have.
I hold fast to other sources of hope, too: family and friends; what I have, not what I lack; what I can still do, not only in spite of Parkinson’s, but because of it; and what brings me the greatest sense of purpose—teaching, writing, and leading in a school of social work; and, of course, being a father.
I want to thank you, Will. Your question helped me realize something I had not been as keenly aware of. Making sense out of having Parkinson’s, and being confident that my having it matters, regardless of how it turns out, regardless of whether we find a cure, helps me find joy in the present. This joy feeds back into my hope.
William Butler Yeats said, “Things reveal themselves passing away.” Living with Parkinson’s disease feels as if things are passing away, slowly, but surely. Movement slows, muscles tighten, cramp, and sometimes spasm and hurt, fingers and hands become less steady, balance wanes, sleep fades, other changes come.
I suspect you know this, Will.
Still, there is hope.
While some things pass away with Parkinson’s, it reveals other extraordinary things that matter.
Herein lies the healing.
Sincerely,
Allan
__________
[1] PWP is an abbreviation for person with Parkinson’s.
[2] This definition of healing comes from philosopher S. Kay Toombs, who lives with her own chronic, progressive, illness, multiple sclerosis.
Photo by Raquel Pedrotti 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, 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.