Normalcy
“When will life be normal again?” My 14-year-old daughter Meredith asks this question, her large brown eyes peering over the top of a blue plaid cloth mask. Their half squint, as well as her tone, tell the story.
Meredith, her sister Holly, and I are on our bikes. It’s early evening in mid-July, roughly four months into the COVID-19 global pandemic, and the temperatures in Central Texas have reached their customary high 90s. Thick air blankets us as we ride slowly through our neighborhood, a nightly antidote to a spreading monotony. The masks stick to our sweaty faces as we pedal through weighty air.
Meredith and Holly have already faced the disruptions of online school and the disappointments of cancelled birthday parties. They have accommodated the need to move most of their adolescent lives into a virtual space—everything from piano lessons and dance class to doctor’s appointments and the lion’s share of friendships. They long to see their grandparents, to host sleepovers and pool parties, to travel as we typically do on summer vacation, to approximate former lives and their rhythms, which for us, includes an abundance of privilege.
Listening to Meredith’s lament, which I know scores of others share, reminds me of Joan Didion’s similar question, “How could this have happened when everything was normal?”[1]
Disruption
In the first months following my Parkinson’s diagnosis, I asked similar questions. When will life be normal again? How could this have happened? For 48 years, I felt well, took no medicine, and made plans for a future I naively imagined already existed, was predictable, and which I took for granted.
When do I get back to that life? When everything was so normal.
As hard as I tried, I could not get away from this answer to Meredith’s question: It is not going to be normal again, if by this we mean exactly as it was before.
Of course, in some ways, this is an extraordinarily sad and even gloomy conclusion to come to; but it is an honest one informed by the experiences of multiple and profound losses that so many of us continue to sustain in this pandemic. The most severe losses include the ability to work and make a living, permanent injury to the body’s systems, and, of course, the death of a friend, family member, or other loved one.
But other losses need recognition, too, such as the loss of feeling human touch and of seeing human faces; the loss of birthday parties, and of shared workspaces, worship spaces, classrooms, and athletic fields; the loss of Commencement exercises, Bat Mitzvahs, weddings, and funerals, among many, many others.
We are losing some of our most fundamental human qualities and experiences, those that not only ground us in normalcy but also tether us to one another in the most basic but necessary ways. Therefore, any new normal has to include the hard work of mourning, of recognizing and accepting our losses, individually and collectively, as a first step toward integrating them into our lives.
Mourning takes time, of course, as well as hard emotional work, and it is difficult to begin this work when we still have no end in sight with respect to the pandemic’s toll. We are all still losing to COVID-19, some of us in incomprehensible, not to mention, irreplaceable, ways.
The same holds true, by the way, for a life with Parkinson’s, with any chronic illness, really. Each day, the illness takes from you, from those you love, from a future that in reality does not yet exist but on which you want to hang a lot of hope. It’s difficult for anyone to live like we do, incurring so much loss.
A New Normal
Still, there are some things to hold onto that offer hope. A great gift of living with uncertainty is that it summons you not to take normalcy for granted, and it invites you to recognize the privilege that so often links with questions such as, “How could this have happened when everything was normal?”
Not only this, but when you can no longer count on things being normal again, whether because of illness, a pandemic, or other hardship, you can mourn what has been lost, set new expectations, and recalibrate your heart. Then, you can strive to live expectantly and with gratitude once again—in a new normal.
How do you do this? One way is to mourn what you have lost while also recognizing what you have gained.
In my case, my family takes bike rides through the neighborhood with masks, our own share of losses and questions, fears and anxieties, anger and lament, grief and sorrow. We also roll with unanticipated gifts—of time, intentionality, connection, gratitude, safety, provision—of being alive.
The same can be true for those on the Parkinson’s ride.
Which reminds me of when Meredith and Holly were much younger and we read together before bed.
“What day is it?” asked Pooh.
“It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.[2]
__________
[1] Joan Didion, The Year of Magical Thinking (New York: Alfred A. Knopf, 2005), 68
[2] A. A. Milne, Tales of Winnie the Pooh (New York: Dutton Books, 2017).
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. His latest book, on counseling people with Parkinson’s disease, will be published by Oxford University Press in 2021. Follow him on Twitter @PDWise.