Challenges
A close friend recently told me about his feeling guilty over what he termed “a parenting fail.” After his son had made a relatively small mistake, my friend spoke to him critically and without compassion and exacerbated his son’s pain.
Of the many facets of life which having Parkinson’s disease has prompted me to reflect on and attend to, none has garnered more of my energy than parenthood. Having Parkinson’s led me, more than ever before, to discern the type of father I hope to be to my daughters, who are now ages 15 and 13 and who were 10 and 8 when I was diagnosed with PD.
When my neurologist said that he thought I had Parkinson’s, literally the first words out of my mouth were, “But I have young children.” Illness can feel threatening. It can also awaken you to what’s at stake in your most significant relationships, bringing newfound motivation to get right the things that matter most to you or to get them as right as you can.
Insecurities
I have shared in previous posts that in the weeks and months that followed my diagnosis, much of the fear, anxiety, and loss I experienced related to questions and concerns about how Parkinson’s would affect my ability to be the father I had always imagined to Meredith and Holly. Would I be able to do the things I’d always done with them? Would their concerns for my health get in the way of a sense of freedom and carefree life that parents want their children to have? Would Parkinson’s rob us of plans we made or of new memories yet to be minted? More haunting, would they see me as less of a father than before? It is hard to admit to worrying about these matters, which involved me casting my insecurities upon my children, but I have discovered that many of us diagnosed with Parkinson’s earlier in life and who have younger children share similar stories of concern. Many of us ask similar questions.
Surprises
Though I could never have imagined it in those early weeks and months following my diagnosis, Parkinson’s has brought a lot of beauty into my life. For example, it has fanned my desire to be a particular kind of parent. I want to be more attentive, patient, and compassionate toward my daughters, and more aware of not taking our time together for granted. Parkinson’s has helped me lighten up and relax, too, and to remember what’s important and what isn’t. Having Parkinson’s has also helped me become more accepting of life’s curveballs and more resilient as they pass, which I hope my daughters see and take note of themselves.
Give and Take
Of course, no parent gets it right every time, and I still work at being the kind of father I want to be to my daughters. I have my parenting fails. Still, I hope my daughters see regularly, especially through my failures, that life’s challenges present opportunities to learn, grow, and become a better version of ourselves.
Parkinson’s is a great taker. There’s no way around that reality. It takes one’s ability to walk, speak, sleep, and move, among many other things one cherishes and depends on to live well.
Period.
And yet, this taker bestows gifts, too, often when we least imagine it possible. I’m learning that it’s ok to take this both/and approach to a life with Parkinson’s: it takes and it gives; it is ugly and beautiful. For me, among its most beautiful gifts is a more informed and self-aware joy attached to being Meredith’s and Holly’s dad than I previously knew.
Courage
When I think of what parenting requires—its give and take, successes and failures, ugliness and beauty—a line in the John Steinbeck novel East of Eden comes to mind: “Perhaps it takes courage to raise children.”[1]
As it does to live well with Parkinson’s disease.
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[1] John Steinbeck, East of Eden (New York: Penguin, 1952).
Photo by Steve Shreve 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 many books on a range of topics related to bereavement, anxiety, and spirituality. His latest book is Counseling Persons with Parkinson’s Disease (Oxford University Press). His next book, Discerning the Way: Lessons from Parkinson’s Disease (Cascade), will be published in 2021. He is also working on a book of poetry titled On Living with Chronic Illness: Porch Poems (Resource Publications), which will be published in 2022. Follow him on Twitter @PDWise.