Night
I glance once more at the digital clock on my nightstand, its lonely white numbers glowing brightly in the dark. My mind darts to my usual nocturnal questions. How will this night unfold? Will I be fortunate enough to get six hours of sleep or will I have to settle for my more customary four to five? I never know the answers. Either way, tomorrow morning I will pay a visit to my neurologist.
It will be a routine visit, my six-month check-up, a typical schedule for many persons with Parkinson’s. Other than my ongoing struggle with sleep—a side effect of carbidopa/levodopa, a medicine that helps me move better—I feel well. As a result, I’m not anxious about this appointment.
It has not always been this way. For the first couple of years after my diagnosis, long before medication-induced insomnia moved in, I would lie in bed the night before a visit to my neurologist tossing and turning for fear of what I might hear from her mouth.
When you’ve never had a serious health condition, and then a single visit to the doctor slots you into a new kind of life, then you cannot help but wonder what any visit to the doctor will bring. This is life with an illness that not only lasts but gets perpetually worse—ironically, we call this progression.
How will my exam go? What score will I receive on the Unified Parkinson’s Disease Rating Scale (UPDRS)? Will my doctor increase the dosage for any of my medications, or start me on a new one? I used to dwell on these questions and others like them. I’d watch the clock’s numbers creep along toward morning with sleepy eyes kept open by a sprinting brain.
Morning
But I don’t dwell on these questions anymore. A pending visit to the neurologist no longer keeps me awake at night, and here’s why.
There’s a line in a Paulo Coelho novel that reads, “She would consider each day a miracle—which indeed it is when you consider the number of unexpected things that could happen in each second of our fragile existences.”[1] Before Parkinson’s, I did not recognize as fully as I do now the fragileness of every day; of every life. Nor did I recognize each day’s potential for game-changing, life-altering, and entirely unwelcome experiences. I did not live expecting unexpected things to happen unless they were good things. No, I lived as if my existence, like that of others, was more or less guaranteed; my health more or less assured if I did the right things; my life path more or less entirely mine to map out.
I lived unaware of the miracle of getting through each day, much less of having the opportunity to celebrate each day for the gift it is.
Parkinson’s made me aware of this miracle, and now I wake each morning with a commitment to live differently. I can control a lot in my world, in my life, but not everything. Some things I must leave to the sphere of mystery, to the realm of unexpected things which can be as filled with joy as it is with pain. This was true before Parkinson’s came so abruptly into my life, and it remains true after the fact.
I still have questions for my doctor with each appointment. My heart still grows heavier when I think about my illness progressing, of what life will be like for me in 20 years. The difference now is this heaviness does not last, does not keep me up at night, and does not diminish my happiness. Nor does it hinder me from living fully. Each. Miraculous. Day.
Now, I hope I can sleep. I have an early appointment with my doctor tomorrow.
__________
[1] Paulo Coelho, Veronika Decides to Die (New York: Harper One, 2006), 209.
Photo by Aziz Acharki 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, a professor of psychiatry and behavioral sciences at 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, and as a regular guest contributor to the Michael J. Fox Foundation’s Team Fox Blog, 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 book is Counseling Persons with Parkinson’s Disease (Oxford University Press). His next book, Discerning the Way: Lessons from Parkinson’s Disease (Cascade), will be published in 2021. He is also working on a book of poetry titled In the Care of Plenty: Poems (Resource Publications), which will be published in 2022. Follow him on Twitter @PDWise.