October 26, 2024

Dear Holly and Meredith,

Today is my anniversary—my eighth with Parkinson’s. More accurately, it’s our anniversary. You two, along with Mom, have lived with the effects of this illness for nearly as long as I have, and all of us continue to experience its inhumanity and devious penchant for taking, but also its propensity to offer extraordinary gifts and measures of authentic humanity and grace.

Holly, you were eight years old on that memorable Saturday morning when I told you and Meredith that I have Parkinson’s. With your exquisite eyes shining from moisture, you asked if we could still go to Disney.

Meredith, in that same conversation, you reminded me that you were every bit ten years old and more than capable of handling the news I was so reluctant to share. You were slightly irritated with me for waiting ten months to tell you about my illness.

For eight years, you have lived with what my diagnosing neurologist and now friend, Dr. Tom Hill, referred to as our new family member, one who, it turns out, is a royal pain in the ass but also a part of our lives that continues to spin off experiences of joy, meaning, purpose, and love that, frankly, I never knew were possible before eight years ago.

Mer and Hols, you know that writing helps me understand more accurately what I think, feel, desire, and experience. Writing and, more recently, playing music helps me heal, grow, appreciate, and live with more energy, passion, and gratitude than would be possible otherwise. Learning to play music has transformed my life. I trust you see this, too.

I wrote you an anniversary letter four years ago. But this one is different in some ways. Foremost, it is different because you are now two amazing young women—strong, intelligent, interesting, kind, compassionate, and beautiful. Mer, you’re spending a gap year traveling to Spain, completing internships, and working on your music as you prepare to begin college.

Hols, you’re learning to fly airplanes, honing your photography skills, and creating interior designs that are almost as exquisite as your eyes. I could not be more proud of you two nor more grateful to live with the sacred privilege of being your Dad.

For years, I was weighed down by what I worried were burdens that my having Parkinson’s created for you. I still worry about this sometimes. Increasingly, however, I can see how our unwanted family member has helped you (and me) develop our capacities for empathy, compassion, strength, authenticity, and humor. I’m grateful for all of that, too.

Speaking of the power of humor, I recall watching Saturday Night Live as a kid, especially a cast member named Gilda Radner. She was brilliant, and her exceptional humor made many lives more fun and joyful. Equally, she enriched lives with her humanity and her courage, especially when facing what turned out to be terminal cancer.

In her memoir, she wrote, “Don’t look for perfect endings, but allow not knowing to lead you to a deeper appreciation of life so that you get your joy back on the way to an outcome that remains to be revealed.”

My appreciation for you and for so many who love and support our family on the Parkinson’s journey grows more profound each year. We have more to celebrate and be thankful for—more than ever!

Maybe we can celebrate a future anniversary with another trip to Disney!

Here are the songs I’m working on.


Places to Stay

Cancelled plans made my day,
Gave me time in places to stay.
Grabbed my bass, wearing a grin,
Making music with my friends.

Life has Takers acting swole,
Also Givers wrapping souls.
Givers stand ready to play,
Let me sing, let me sway.

Life makes sense. Life is strange.
Givers and takers—joy and pain.
Illness teaches losers can gain
If we find places to stay.  

If we find places to stay.

She was first to show the way,
Saying promises we both made.
Standing tall, she said, “You’ll be OK,”
“Promises mean we’ll be OK.”

Daughters make life complete,
Filling my heart and dreams in sleep
One gives music, one gives play.
Love grows in places to stay.

Love grows in places to stay.

Life makes sense. Life is strange.
Givers and takers—joy and pain.
Illness teaches losers can gain.
If we find places to stay.

If we find places to stay.

Love means Takers cannot win.
Love is music that never ends.
Be a giver—do what you say.
Promise to love, come what may.

Promise to love, come what may.

Others make me a better man,
Husband and father, son and friend.
Generous faces, compassionate grins,
Fill my places again and again.

Fill my places again and again.

Life makes sense. Life is strange.
Givers and takers—joy and pain.
Illness teaches losers can gain.
If we find places to stay.

If we find places to stay.

 

Wise Ones Know

Wise ones know you can lose
What you have, what has you
Know you keep what is true
Who you love. Who loves you.

When we seek, we can find
What matters most. What outlasts time.
Sages get it. Holy Ones, too.
What about me? What about you?

Wise ones know love is what we need
Love given, love received
Risking love will set us free
Let you be you. Let me be me

Searched for years but did not know
Living real would help me grow
Become myself, learn more of me
Give to others, live more free

Every moment offers beauty
Expecting joy is our duty
Tomorrow’s pain is for another day
Loving madly provides a way

Wise ones know love is what we need
Love given, love received
Risking love will set us free
Let you be you. Let me be me.

Risking love eases pain
Filling hearts–love’s refrain
Eyes see what stays true
Hearts see it too, for me and you.

A younger me, I had it wrong
Life is short; time marches on
We need not waste a moment more
Let’s love madly. And love some more.

Wise ones know love’s what we need
Love given, love received
Risking love will set us free
What about you? What about me?

I love you!

Dad

__________

Allan Cole is Dean of the Steve Hicks School of Social Work at The University of Texas at Austin, where he also serves as the Bert Kruger Smith Centennial Professor in Social Work and as Deputy for Health Humanities and Technology and Professor of Psychiatry and Behavioral Sciences at the Dell Medical School. Diagnosed with Parkinson’s in 2016 at the age of 48, he is the author or editor of 15 books on a range of topics related to chronic illness, bereavement, anxiety, and spirituality. His latest books are Jumping to the Skies: Additional Lessons from Parkinson’s Disease (Cascade, 2023) and Riding the Wave: Poems (Resource Publications, 0ff-press soon). Other recent books include Discerning the Way: Lessons from Parkinson’s Disease (Cascade), In the Care of Plenty: Poems (Resource Publications), and Counseling Persons with Parkinson’s Disease (Oxford University Press). With filmmaker and his creative partner Vanessa Reiser, his documentary titled “The Only Day We Have” aired in April of 2024 on PBS. You may watch it here.