by

In the Dark

In the fall of 2016, I sat in a dark room reading Michael J. Fox’s book Lucky Man on my Kindle as waves of anxiety rolled through me. It felt like what you expect to happen in the ocean just before a storm. A couple of months had passed since I joined the ranks of those living with Parkinson’s disease before the age of 50, the “young-onset” group, as we are called. On most days, I struggled with questions about my future and whether life could still be good for me and my family.

As many people I would come to know in this beautiful if also resilient community had done, I looked to a man I had not yet met for comfort and encouragement. He made me feel less alone in this journey I’d just begun and more hopeful about the miles ahead. Indeed, it did not take long for me to realize that the public face of Parkinson’s—the Alex P. Keaton and Marty McFly and Teen Wolf of my adolescence—had a lot of wisdom to share, as well as perspective and hope in the face of adversity. To say that I relied upon Michael’s infectious courage, humor, and optimistic point of view for my sanity is to overstate it only slightly. In fact, I’m not sure I would have gotten through those first weeks and months intact had it not been for Lucky Man, Michael’s first memoir, and Always Looking Up, his second.[1]

Rays of Light

Here are a few things he said in those books that I read just when I needed to have nuggets of wisdom to hold onto.

  • One’s dignity may be assaulted, vandalized, and cruelly mocked, but it can never be taken away unless it is surrendered.
  • My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.
  • Happiness is a decision.
  • Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.
  • Control is illusory. No matter what university you go to, no matter what degree you hold, if your goal is to become master of your own destiny, you have more to learn.
  • And, perhaps most poignant for me to read now, It may seem hard to believe, but it’s catastrophe that offers the most promise for an even richer life. This is the gateway to the good stuff. In other words, you never truly know which way the wind is blowing until the shit hits the fan.

We rarely associate hardships, much less catastrophe, with a gateway to something good. These experiences are by definition, hard. They come with challenges, even struggles, monumental life shifts, and in the case of a serious medical diagnosis like PD, with lots of losses, too. But Michael is on to something here, and though I might not have believed him in those first weeks and months after my diagnosis nearly five years ago, I now know his perspective is spot on.

Good Stuff

Just to make sure, I decided I would make a list of the “good stuff” that Parkinson’s has put in my path, as a way to test Michael’s way of thinking. It’s not an exhaustive list, and I’ve compiled it without a lot of reflection, meaning I’m just writing down what comes to mind. But, here I go:

  • I have met extraordinary people who live with Parkinson’s or who love those who do, and these folks enrich my life beyond measure.
  • I appreciate life at the moment and savor each day. Today is all we have.
  • More than ever, I care about relationships and spending meaningful time with those I love.
  • Now, I notice others’ pain and suffering more quickly than ever and I look for opportunities to offer support.
  • I worry less about the future.
  • More than ever, I value and savor deep friendships.
  • Sharing my struggles, pain, questions, worries, insecurities, and simply living with more vulnerability comes much easier these days.
  • No longer do I delay doing things or having experiences that interest me.
  • I have learned a lot about medicine, Parkinson’s research, and scientific challenges and breakthroughs.
  • I have met exceptional physicians and medical staff.
  • I am more compassionate and patient.
  • Goodness and generosity in others stand out to me like never before.
  • I take myself less seriously and laugh at myself more.
  • Failure troubles me less than it used to.
  • Injustice weighs on me, and I am more eager to walk in solidarity with those who are marginalized or mistreated.
  • I am more content with simpler things and a less cluttered life.
  • It has become clear to me that we have a health care system that provides very well for some, including me, but leaves others unattended.
  • More than ever, I tell the people I’m closest to—family, friends, colleagues, and neighbors—that they are important to me, valued, and loved.

So, this is my working list. I suppose I’ll think of other good stuff after I post this piece, but this is what comes to mind now.

My Way Through

It’s important for me to emphasize that focusing on the “good stuff’ of Parkinson’s does not mean having this illness is entirely good. In fact, having Parkinson’s stinks. I have heard Michael say so, too. He calls it the “suckatude” of PD. But for me, trying to live each day attuned to the “good stuff” makes life better than dwelling on the “bad stuff,” which robs me of the joy that comes with anything I have put on my list. As Michael says, Happiness is a decision; and [a]cceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.

My way through Parkinson’s is to embrace the good it has brought me and continues to bring, especially when the shit hits the fan.

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[1] See Michael J. Fox, Lucky Man (New York: Hachette, 2003) and Always Looking Up: The Adventures of an Incurable Optimist (New York: Hyperion, 2009). Michael’s latest memoir, No Time Like the Future: An Optimist Considers Mortality (New York: Flatiron, 2020) is also full of wisdom. I’ll write about this in a future piece for PD Wise.

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.