“Will I be able to work until I’m 70?”
Those were my first words when I learned in 2012, at age 50, that I had Parkinson’s disease. I had not planned for that question to pop out of my mouth, but it did. Perhaps I was worried about money: The size of my retirement account makes early retirement seem implausible.
But mainly I think I asked that question because work, for better or worse, has become central to my identity. The idea that my career as a historian would end soon, that I would need to find another way to occupy my time, felt truly disturbing.
I was pleased and surprised when my neurologist at the Mayo Clinic confidently assured me that I could continue to work for the next couple of decades. He then gave me a good, science-based pep talk. He discussed some misconceptions about the disease and some hopeful research developments. A professor and researcher himself, he mentioned some conflicting views about Parkinson’s that have led to contentious debate at recent medical conferences.
On the one hand, that surprised me. In the back of my mind I had seen medicine as based on objective science, and Mayo as its grand repository. On the other hand, this arena of contested truth seemed utterly recognizable. Some people think of my field, history, as a collection of facts to be memorized when, really, interpretation and argument are the central features of its practice.
Like the academic I am, I asked the doctor for a reading list. For years I have thought that a clearly organized syllabus can help you understand any problem. Surprisingly, my doctor discouraged me from reading anything. He felt it might produce undue anxiety at a time when my Parkinson’s was quite manageable.
Unable to countenance a course of action based on deliberate naïveté, I insisted on more information. He then recommended one of the most reliable overviews of the disease, The Parkinson’s Disease Treatment Book. The next day, I sat down and pored over the brick-size tome.
Perhaps my doctor was right, and I should not have bought the book. I read it cover to cover, stopping every hour to hit the panic button. But I stuck with it, as I knew it came from a reliable source.
My professional experience helped me cope. Many people, once receiving a diagnosis, would have joined a Facebook group to discuss a complex and variable disease with complete strangers, or would have searched Google with the term “possible scary stuff associated with Parkinson’s or Parkinson’s medications.”
Still, as I pursued my reading, I returned to my original question: Would my academic career, and therefore much of my life, soon be over?
As professors, we often complain about our jobs. My own criticisms will sound familiar to my fellow academics: We teach too much, we are paid too little, we need stronger faculty governance, and the library needs more books.
I grumble, but I can’t imagine a better career. We get to teach young people at a formative period in their lives, and we find the time to read and write about topics we love. Outside of certain state legislatures and the Fox News channel, we receive a degree of respect: Even my neurologist calls me “professor.”
And most important, we have relative job security. When I received my diagnosis, my question about keeping my job was not ridiculous. In a market-based social system, the threat of job loss is terrifying, even for those who could receive disability payments. Stigma forces many Americans to hide important parts of their personal lives when they’re at work. Some may hide their sexual orientation. Others hide their mental illness. Many people hide their Parkinson’s as well. Forbes magazine recently, if somewhat inaccurately, called Parkinson’s “The Last Workplace Secret.” Imagine the pressure faced by a Parkinson’s sufferer with no job security. Stigma could be disastrous for someone who needs manual dexterity at work, such as a construction worker or Walmart clerk.
The former CBS News correspondent Bill Geist refused to admit his Parkinson’s for years, even when viewers wrote to express their concern.
More famously, Michael J. Fox’s memoir, Lucky Man, recounts seven years of misery while he kept his diagnosis secret, including the first few years when he was producing and acting in his situation comedy, Spin City. Fox began to see himself as “lucky” when he came forward and received support from friends and fans.
We know that Robin Williams suffered from substance abuse, depression, and the recent cancellation of his own television show. While any suicide remains inexplicable, especially to those like us who read about it at a distance, his decision to hide his recent Parkinson’s diagnosis cannot have helped in his struggle.
In contrast, I am lucky: I have tenure, which gives me a feeling of security that even popular entertainers may lack. Tenure does not guarantee me a job for life, but at least it will allow me to speak my mind and keep my job as long as I can perform my duties.
Will I be able to work until I’m 70? I think so. I know that my family and I will face new challenges, but I do not expect a decline in my job performance. My students may find my appearance a bit odd, but if they do, then that will be a “teachable moment.” Tenure allows me to publish this essay without fear of repercussions. For me, tenure is a shield against stigma.
I had the freedom to tell everyone I knew about my Parkinson’s, even though my social life overlaps with the scholarly community in my town. Happily, I avoided the misery of living with a secret. I phoned our closest friends, including many colleagues, and gave them the news. I asked my friends and my department chair to tell others. At the end of the summer, I did a long bicycle ride to raise money for Parkinson’s research. I even felt free to announce the ride in that peculiar public forum of our day, Facebook.
In response, I felt an outpouring of support from friends and colleagues, and it felt great that so many people cared. But after a month of this kindness, I began to feel uneasy. I didn’t want to be the “professor with Parkinson’s.”
I am a professor of history, not a poster child for an illness. I love teaching and research (most of the time); I dislike committee work and long meetings (most of the time). My department is collegial, yet we share the discord that comes with working together in an age of budget cuts.
Often I am reminded of that statement attributed to Henry Kissinger, that academic politics are so “vicious” because the stakes are so low. Scholarly disagreements may involve small stakes, but they are an unavoidable part of academic life.
Ironically, one of the best things to happen to me recently has been that people around the university stopped being especially nice to me. I have been drawn into several arguments, and I am certain that there will be more in this new academic year.
Last semester a colleague with whom I’ve butted heads before engaged with me in a new quarrel about yet another campus dispute. It was that classic sort of campus debate in which we both magnified the importance of a relatively insignificant disagreement. Suddenly, I wanted to shake his hand and thank him. By showing his hostility toward my point of view (and perhaps me personally) he had signaled that I was no longer the “professor with Parkinson’s.” I was just another professor, which was exactly what I wanted.
At that moment, I knew I was truly back on the job—and I couldn’t have been happier.
