When a friend calls to me from the road
And slows his horse to a meaningful walk,
I don’t stand still and look around
On all the hills I haven’t hoed,
And shout from where I am, “What is it?”
No, not as there is time to talk.
I thrust my hoe into the mellow ground,
Blade-end up and five feet tall,
And plod: I go up to the stone wall
For a friendly visit.[1]
A Time to Talk
Robert Frost
Zooming
The laughter begins almost immediately, as one of us quips about needing a pandemic haircut and another about needing hair. Banter about being in and out of shape follows, and then comes mention of hand tremors, dyskinesia, insomnia, and other self-deprecating talk. Seven middle-aged men, all in our 40s and 50s and sharing the moniker of young-onset Parkinson’s disease, are Zooming on a Thursday night.
Bret is in New York, Chris in Connecticut, Ethan in D.C., Bill and Jimmy in Chicago, I’m in Austin, and Jonathan, our Canadian friend, is in Vancouver, British Columbia. Brought together three years ago by illness, The Michael J. Fox Foundation for Parkinson’s Research (MJFF), and a mutual interest in running marathons, now we live united in friendship, and in our desire to lead active and meaningful lives in spite of the Parkinson’s beast.
We should have gathered in April in New York, an annual affair, in order to celebrate another year of work on behalf of MJFF. But COVID-19 put the skids on that plan. Missing these guys, I put together a Zoom call so we could connect, regress in maturity for an hour or so, and catch up on one another’s active, interesting, and Parkinson’s-laden lives.
Recollecting
Looking back three years, I met Bret and Jimmy first. Several months after my diagnosis in the fall of 2016, and still enduring anxiety-laced days and sleepless nights while tucked deep in the back of my Parkinson’s closet, I reached out first to Bret and then to Jimmy, both of whom I found online due to their advocacy and efforts to raise awareness of Parkinson’s.
I reached out to them because I needed to hope. I had to hear that I could still be the father I wanted to be, that the career I loved could continue far into the future, that I could find ways to contribute, encourage, raise awareness, and educate—to do some good with something so $#^TY. I needed to believe that I would be OK; and that my family would be OK; and that life could still be good and even joyful again.
Putting it another way, I reached out to Bret and Jimmy because I was suffering in silence and secrecy, and I needed what Emerson describes as, “a person with whom I may be sincere. Before [whom] I may think aloud.”[2]
Bret and Jimmy allowed me to do both. This will come as no surprise to those who know them.
Shortly thereafter, I met the rest of this Zoom crew. I first spoke to Bill as he prepared to walk across the United States, from Georgia to California, which he accomplished in 2018; and shortly after that, I met Chris, Ethan, and Jonathan at a MJFF event, and we quickly became friends.
All of them generous souls, they have made my first miles down the Parkinson’s road less lonely, more hopeful, and certainly more fun than I ever would have imagined possible when my neurologist’s words stopped me in my tracks: “I think you’re in the early stages of Parkinson’s disease.”
Quoting Robert Frost again, “That has made all the difference.”[3]
Friending
Of all the lessons I’m learning from Parkinson’s, what friendship means and requires is certainly one of the more significant ones.
I’m not proud of this, but for much of my pre-Parkinson’s life I wasn’t great with friendships. Don’t get me wrong, I had friends; lots of them, in fact. I’m grateful for that. But I never had the kinds of friendships I have now; and I don’t mean only the friendships I enjoy with fellow Parkinson’s journeyers. Many of my longtime friendships have also deepened since the Beast tapped me on my shoulder.
What I’m talking about are friendships built on trust and risk; loyalty and commitment; generosity and sacrifice; on sharing both joy and sorrow, success and failure, confidence and fear—honestly, consistently, reciprocally.
For nearly three decades, I watched with admiration as my wife Tracey had these kinds of friendships, whether with people she recently met or those that go back to first grade. I saw how life-giving these friendships are for her; how they interweave with other elements in the fabric of her life. Now, because of Parkinson’s, I have these friendships, too. They’re one of the gifts that having a progressive, incurable, debilitating, neurologic disease has provided.
Emerson said that, “It is one of the blessings of old friends that you can afford to be stupid with them.”
This is true.
But what Tennessee Williams said is also spot on, whether you have Parkinson’s, or not.
“Life is partly what we make it, and partly what it is made by the friends we choose.”
___________
*Jonathan is missing from the Zoom shot because he arrived late due to napping and having to feed his hungry cat.
Photo: Bret Parker
[1] Robert Frost, “A Time to Talk,” in The Poetry of Robert Frost, rev. ed. (New York: Holt Paperbacks, 2002), public domain.
[2] Ralph Waldo Emerson, “Friendship,” in The Essays of Ralph Waldo Emerson (Cambridge, Mass: Harvard College, 1979), 111-128.
[3] Robert Frost, “The Road Not Taken,” in The Poetry of Robert Frost, rev. ed. (New York: Holt Paperbacks, 2002), public domain.
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