Being Happy
Parkinson’s brings surprises. Some unexpected events are pleasant, such as meeting extraordinary folks who live with this illness, while others are unpleasant, such as the various symptoms that come with losing dopamine in your brain. It’s a mixed bag, but still, when people ask how I’m doing, I often quip, “For a 52-year-old man with a progressive neurologic condition, I’m doing just fine.” And I mean it.
Which brings me to one of the biggest surprises about having Parkinson’s disease (PD): Most of the people I know who live with PD are happy. They’re not happy they have Parkinson’s—it sucks big time, for all of us—but happy in the ways we think of anyone being happy, namely, living satisfied, content, with purpose, and experiencing joy, even as their struggles with this illness remain challenging and real.
Recently I heard an acquaintance say, “It comes down to my realization that I just want to be happy; that this is what life’s all about.” He made this remark as a group of us met on Zoom and discussed the pandemic.
He is not alone in his perspective; I suppose most people would identify happiness as a chief end in life. We want to be happy, just as we want happiness for our children, other loved ones, our friends, and, on our better days, even for those who have angered or hurt us. We recognize happiness as a basic good, for everyone, and that pursuing happiness remains part and parcel of being human. Still, how we pursue happiness and where we look for it can differ, whether living with illness or not.
Misassumptions
Many people assume that those of us living with a chronic illness must not be happy. How could we be, the thinking goes, given the ongoing challenges of managing life when feeling poorly? It’s a fair question, but it’s misguided.
British philosopher Havi Carel, who lives with a chronic lung condition, challenges what lies behind this assumption, namely, that a good life requires good health, and she pushes back on those who would view illness as a disaster that strikes and essentially ruins one’s life.[1]
She tells the story of getting into a taxi late one night after a full day of work at an academic conference. Because of her chronic lung condition, she carried a cylinder of oxygen with her. As it moved the oxygen through tubes and into her nose, its distinct sounds filled the quiet cab, and after driving a short distance, the taxi driver inquired about the apparatus. When Carel explained what it was and that it helped her breathe with a chronic lung condition, the cab driver’s response was, “I pity you.” As she departed the car, he promised to pray for her.
Though many of us welcome prayers, I have yet to meet anyone with Parkinson’s who wants pity. This is because those who live with PD often tell a different story than the taxi driver assumed about illness. In fact, research shows that both disabled and chronically ill people seem to have only somewhat lower levels of well-being (which includes happiness) compared to healthy people, while many studies find no difference in levels of reported well-being between groups of people with a variety of medical conditions and healthy controls.[2]
Other studies demonstrate, more or less, what health economists and happiness researchers have found occurs, namely, that after a year or so of living with a chronic illness, unless it results in a severe disturbance in the way one lives, one should expect to live as happily as one did prior to becoming ill.[3] However, what becomes the basis for happiness certainly can change. Importantly, life with an illness is not necessarily a happy life, but it may be a happy life if one develops certain perspectives on illness and embraces particular ways of living with it. Similarly, healthy people may live exceedingly unhappy lives.[4] Also, although illness remains unwelcome for all of us, in our fears about becoming ill we neglect to consider the opportunities it presents for learning to live well because of illness, which includes being happy.
Rethinking Happiness
Is happiness, then, really our chief end in life; or could it be something else?
Ralph Waldo Emerson thought so, noting that, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
My experience has been that living with Parkinson’s, and maybe any chronic illness, has most to do with discovering one’s usefulness going forward—for living, working, learning, relating, whatever we deem important—but especially with finding compassion, for others as well as ourselves.
Which brings me to my friend and colleague, Andrea. A person of relatively few words, she listens as well as anyone I have met, and she also has a rare ability for discernment matched by an enviable dry sense of humor. The world needs more of both. You sense in Andrea a grounded spirit, confident resolve, and principled kindness that make those around her more discerning and kind.
Last week, she informed me, in a rather matter of fact way, that she would need to take some additional time off from work over the holidays, between the fall and spring semesters, because she will be recovering from surgery after donating a kidney to her friend.
Andrea does not live with Parkinson’s. But if she did, I think she would be happy. I believe she would continue to have experiences of deep satisfaction and contentment, which are more lasting and firmly established than what we might typically think informs happiness, and I am confident that she would look at illness as something that brings opportunities for meaning, growth, compassion, joy—happiness, along with many, many surprises.
I also think she would point to Emerson, noting that what he said is true, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
[1] Havi Carel, Phenomenology of Illness (New York: Oxford University Press, 2016), 131.
[2] Carel, 134.
[3] Carel, 135.
[4] Carel, 132.
Photo by Luca Upper 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 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, 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 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.