April 5, 2020
Dear Holly,
I often think back to that spring day in 2017, when you were nine and I had not yet told you about my having Parkinson’s disease; hardly anyone knew. I had not yet mustered up the courage to share it. I was afraid of what life could be like once people knew. How would they see me? Would they think I was too sick to keep doing things together? Honestly, in those first months after I was diagnosed, I wasn’t sure how I’d keep going.
But I knew I had to figure it out.
Then, one Saturday afternoon, as I sat in our living room reading, you opened the front door, called for me, and said, “I think I’m ready, Daddy.”
Wearing your new purple leotard with pink and white accents, you gestured for me to follow you outside, which I did. When you turned around, I noticed your long, curly hair pulled back in a tight ponytail. It was held by a color-coordinated scrunchie that I’m sure you’d carefully chosen. You always take your time choosing what you put in your hair.
I remember how strong and poised you looked.
As a dedicated gymnast, you’d spent several hours each week in our front yard working on your tumbling, which built on the formal practice you got at your gymnastics school. You’d had your mind set on learning a new skill, a round off back handspring that ends with a back tuck; what I called your back flip. You’d worked hard to learn it. Almost every day.
I watched you practice every chance I could. Sometimes, I watched from our yard, cheering you on as you made attempt after attempt. Other times, I peered stealthily through our living room bay window. You kept getting better at your tumbling routines; and you kept adding new elements. You also got more confident, I could see it in your face.
When you began learning to tumble, you could barely flip your body and I held my breath each time you took-off running across the front yard. I could hear the sound of your petite muscular frame whiz by, followed by several determined grunts.
After days of trying, when you finally did a full flip, you landed like a frog, with your butt on the ground and your legs folded up under you. Actually, you landed this way dozens of times over the course of several more days of hard work. But you kept at it, day after day, week after week: whizzing by, grunting, flying through the air. Eventually, you went from landing like a frog to landing more like a filly, trying to steady your legs under you without falling over.
Then, one Saturday afternoon, it was time.
I can still picture it, as if it is happening at this moment.
With a running start, you speed cross our front yard. Lunging forward into a round off, then into a back handspring, and then into a back tuck, your little body folds-up with purpose. Then, in an instant, you unwind and land with your legs fully extended, like a confident eagle reaching out before a perch. Quickly arching your back, your arms shoot high in the air. Your two giant dimples flank your gaping smile. As they say in gymnastics, you stick the landing!
I’ll always remember this day.
I mention it because three years later I’ve come to realize that my living with Parkinson’s is a lot like you learning to do that back handspring with a back tuck. What I mean is that for me to live well with Parkinson’s I have to work at it. I have to push through harder days, like when my legs feel like a frog’s or a filly’s, or when my body doesn’t work like it used to, like I want it to. Like you did, I have to keep challenging myself to stick with it, to be persistent.
I need to get out of bed in the morning, take my medicine, eat a good breakfast, run or go to the gym, get myself to work, and aim to be productive. I need to get adequate sleep, try to reduce stress, eat healthy food, and stay connected to the people I care about and who care about me—Mom, you, and Meredith, Grams and Papa, Nonni, Aunt Marie, Tom and my other friends, our neighbors, and my colleagues at UT.
What’s really important, too, is that I stay in close contact with other people who live with Parkinson’s: Ethan, Allie, Bret, Bill, Jimmy, Heather, Chris, and lots of others—you know most of them. We support one another in ways that I guess can only happen if you have Parkinson’s and know what it’s like to have to work at managing it.
But I have to do some other things, too—and these are things I learned from watching you. I have to keep a positive attitude, and tolerate my frustrations, and learn from disappointing experiences or setbacks.
After all, who sticks every landing?
Most important, I have trust not only that I can live well with this illness, but that I can keep getting better at it.
I promise I’ll keep working hard to do just that.
Thank you for teaching me how.
Love,
Daddy
P.S. Have you finished your homework?
__________
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