Chills
Certain things about that extraordinary day three years ago remain stamped in my memory, when Tracey, my partner of 27 years, ran the New York City Marathon and I was there with our daughters, Meredith and Holly, cheering for her.
There was the bright blue sky that covered the city that pristine fall day; and Tracey running up 4th Avenue in Brooklyn dressed in purple New Balance shoes with a matching shirt and headband; and her face radiating joyful freedom and fierce determination. I also remember our girls holding a sign they’d made that read, “Go Mom!…Bib #29292”; and I can still picture Tracey wrapped in a royal blue warming poncho that she received when crossing the finish line in Central Park, the look on her face now showing equal parts exhaustion and elation.
These memories continue to captivate me.
They always will.
But there are also gaps in my memory. Only 11 days earlier, my doctor delivered the bone-chilling news that I had Parkinson’s disease at the age of 48. As is true for many people, I was riding along a smooth road in mid-life—raising young children, enjoying a successful career, making plans for the future—and I got T-boned at an intersection I never saw. I had to acknowledge losing an imaginary control over my life. More than that, I feared my life was over.
Insights
When I return to New York in a couple of weeks to run my own marathon, I expect to form new and less gap-filled memories. Now inhabiting a different emotional space, I know that I can live a full life with this disease, and that as changes occur and challenges present themselves I can adapt, compensate, and, when needed, simply accept a new normal and reset my expectations for this full life. Adjusting your expectations goes a long way when seeking meaning, endurance, and peace with chronic illness. This I have learned from cohabitating with the Parkinson’s beast.
I have learned other things. One is that medicine is at once miraculous and maddening, able to treat many illnesses, including Parkinson’s, but not necessarily able to cure them. This reality requires setting expectations accordingly, hoping for better treatments and a cure, believing they will come because the science says so, while recognizing that progressive diseases progress and that to live means not betting it all on the future but also cashing in today.
I have learned, too, that children are typically better at talking about hard things than we assume, are usually better at it than grownups, and that a child’s honesty, courage, and resilience can inspire our own. As excruciating as it can be to share bad news with your children, when you do it can turn out to be good, for them and for you.
Keeping secrets can destroy you.
Tracey, Meredith, Holly and I speak openly and honestly about my Parkinson’s. We pose and answer questions, talk about new drugs and therapies being developed, celebrate friends doing good work to raise awareness and funds for research, try to make our own contributions, and we can even be playful about it all. But we only talk about Parkinson’s issues when there’s the need. More often, we talk about theater and dance, school and friends, sleepovers and swim parties, our dogs and pet bird, our hopes and dreams.
I have also learned anew that there is a lot of suffering around us, all the time, and that we can begin to notice its contours and textures more readily when we ourselves suffer. As Tracey always says, “Everyone has their s*it.”
Because I know Tracey is right, I find enormous value in living openly with my disease, which includes speaking honestly about it when others mention it or when it feels appropriate for me to discuss it. Putting others at ease with my illness helps me feel more at ease, and talking about Parkinson’s helps educate people and can lead to their involvement with finding cures and offering support. But transparency about my disease can also invite others to share their own struggles, fears, and needs with me, which allows me to support them and deepens our relationship.
I never imagined that having Parkinson’s would teach me any of this, and so much more.
Warmth
Back to the marathon. I have run it numerous times in my imagination, visualizing what it will be like to join 50,000 runners, including several of my Team Fox* friends, and wind through the five boroughs of New York.
Several people have asked about my race goals.
My goals are modest, really. I hope to enjoy myself, to soak in the energy of it all, but most of all to hug my family and friends along the route and tell them I love them, celebrate them, and remain grateful for their support. I suspect they will see my face reflecting a deep sense of freedom and determination, exhaustion and elation. If my good fortune continues, I’ll also wrap a warming poncho around myself at the finish line with an overflowing heart.
Then, walking through Central Park and thinking of my many sisters and brothers who also live with this cruel disease, I’ll flip Parkinson’s the bird.
With both hands.
*Team Fox is a grassroots fundraising community of the Michael J. Fox Foundation for Parkinson’s Research
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Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin. 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: @PDWiseBlog