October 26, 2020
Dear Holls and Mer,
It’s hard to believe it has been four years since my Parkinson’s diagnosis. I have never been one to make a big fuss over anniversaries, just ask Mom. But it feels important to write you this letter and share some things I have on my mind. Things I have realized the last four years.
The first year with Parkinson’s was the most difficult one because, as you know, I did not tell anyone I have this illness, including Grams and Papa, and both of you. I learned a lot in that year, including that it isn’t good to hold our pain inside or to hide our feelings from those we love most. Honestly, being secretive about my Parkinson’s took more of a toll on me than Parkinson’s did. In hindsight, I wish I had been ready to share what I was going through sooner; it took me some time to understand the importance of not going this alone.
I have challenging moments; you probably see some of them. But so many more moments are full of gratitude, happiness, and hope. I hope you see those, too.
You know I finally gave up my dream to pitch in the major leagues, but, thankfully, my physical challenges remain manageable. Some things are harder to do, such as buttoning a shirt sleeve (you know this because you help me sometimes), and getting a good night’s sleep, and keeping my symptoms at bay when I’m under stress, but I can still do what I have always done and I hope this continues for many more years. My doctors tell me it should.
I don’t know what future days will entail, of course, but that would be true if I didn’t have Parkinson’s, too; and it’s that way for everyone, really.
I do know that we have generous and supportive people in our lives, which helps a lot: our family and friends, my colleagues and doctors, and especially others who live with Parkinson’s. Together, they help me find ways to push through the more challenging moments, to keep moving forward, and to keep living the one and only life any of us have.
You help me too, you know, just by sharing your awesomeness. Just by being you.
You know I love to write, and that I write a lot these days about my life with Parkinson’s. Writing about Parkinson’s helps me find meaning and purpose in having it, and also helps me heal and live better. I also write about my experiences because I want to help others discover their own meaning, purpose, and healing, whether they live with Parkinson’s or face other challenges or uncertainties.
You also know I love to teach. As a teacher, I tend to look for the lessons I am learning from Parkinson’s. So far, these have been lessons on trust, patience, discipline, authenticity, vulnerability, values, privilege, injustice, kindness, compassion, gratitude, hope, and so much more.
As is true for you in school, I do not have all of these lessons down pat, or learned once-and-for-all. And I cannot learn them by cramming, by copying others, or by trying to memorize them, either. Instead, these lessons unfold each day, little by little—through living life, facing its setbacks, recognizing its beauty, and nurturing ourselves, and others, through love.
That’s one of the biggest lessons so far.
I think you’ll agree that with a slow unfolding of these lessons comes more understanding, but sometimes more confusion, too. Learning often happens this way. Like with your Spanish or math! Right?
Well, I am learning each day as I go, gradually becoming better at understanding Parkinson’s and better at living with it, too, even as new questions come up, confuse me, and require me to keep exploring for answers.
There are always new lessons to learn.
You were young when Parkinson’s rudely joined our family, and now you are older, 13 and almost 15. Wow, what a quick four years.
I don’t want to make a big fuss over this anniversary. But I do want you to know that who you are provides me precious daily gifts of love and hope, joy and fun, gratitude and expectation—and all of this began the moment I knew you were coming into the world. Together, you fill my heart and soul.
Especially when you laugh at my Dad jokes.
No doubt, you will face difficulties in life. Everyone does. Mom and I wish we could prevent these difficulties and spare you the pain they bring, but no parent can do that. No life has only the easy stuff to deal with.
Just remember that you do not have to face the difficulties alone, or hide your feelings, or carry your pain inside.
Ever.
Remember this, too. The dad who tells corny jokes and loves you so much also learns, grows, lives a good life, feels joy, and finds peace in the face of his own challenges; and from personal hardships, whether our own or others’, we can learn some of life’s most important lessons.
So, who is watching the World Series with me?
It’s our anniversary!
Love,
Dad
__________
Photo by Avinash Kumar 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, 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 the author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. His latest books, Counseling Persons with Parkinson’s Disease (Oxford University Press) and Discerning the Way: Lessons from Parkinson’s Disease (Cascade), will be published in 2021. Follow him on Twitter @PDWise.