When some people learn that I wrote a scholarly book on celebrity illness, they are skeptical. After all, celebrities are associated with a certain superficiality and self-promotion. How much can we really learn about famous people who go public with as serious a topic as disease?
Quite a lot, it turns out. From Lou Gehrig to Betty Ford to, most recently, Alex Trebek, ill celebrities have taught us about dozens of illnesses and their treatments.
There may not be so powerful and enduring an illness narrative as that of the actor Michael J. Fox…
But there may not be so powerful and enduring an illness narrative as that of the actor Michael J. Fox, who has now written his fourth autobiographical book, No Time Like the Future. Although this book, as with the previous volumes, deals with topics other than Mr. Fox’s 30-year struggle with early-onset Parkinson’s disease, the illness is always front and center. Patients with Parkinson’s — or other chronic degenerative illnesses — can learn a lot from his great candor and insights into ongoing infirmity.
Among the first examples of a celebrity illness was that of Lou Gehrig, the durable New York Yankees’ first baseman who was diagnosed with the terminal neurological disease amyotrophic lateral sclerosis in 1939. Gehrig was forthcoming, allowing the press to report the exact diagnosis and thus educate the public about a largely unknown malady. He received thousands of inquiries about his condition.
At the same time, however, both Mr. Gehrig and the press gave an overly optimistic assessment of his condition, suggesting, for example, that he was responding to vitamin treatment and that there was a 50% chance he would stabilize. As such, it went largely unstated that Mr. Gehrig would ultimately die of ALS, which he did in 1941.
Over the next several decades, ill celebrities became even more transparent. For example, diplomat and former child actress Shirley Temple Black revealed her breast cancer diagnosis in 1973 and First Lady Betty Ford did the same in 1974. These disclosures helped to explain a disease formerly shrouded in secrecy. As had been the case with Mr. Gehrig, thousands of Americans wrote to these women offering emotional support and asking for specific information about their physicians, diagnosis and treatment.
What was largely missing from media coverage, however, was discussion of how often breast cancer was fatal. Indeed, most celebrity illness narratives chronicled famous people who had “beat” their diseases — as did Ms. Black and Ms. Ford. Famous people with poor prognoses either stayed quiet from the start or did so when their conditions began to deteriorate.
More recently, with the growth of celebrity culture of social media, celebrities likely to do poorly have also begun to openly acknowledge their conditions. Lawyer and political spouse Elizabeth Edwards did so with her breast cancer as did Senator Edward Kennedy with his brain cancer. Most recently, Jeopardy host Alex Trebek was particularly forthcoming with the details of his pancreatic cancer — from which he died earlier this month.
But Mr. Fox has trumped all of these disclosures. In addition to writing his books, he has remained very much in the public eye, continuing to act and starting an eponymous foundation dedicating to learning more about patients’ experiences with Parkinson’s disease and finding a cure. Youtube is full of clips of Mr. Fox experiencing the characteristic tremors, stiffness, dyskinesias and slurred speech that the disease causes.
As with his previous books, Mr. Fox remains very candid in No Time Like the Future. With Parkinson’s, he writes, control is “out of the question.” Mobility and balance are constant issues as is his recent “diminishment of movement.” A substantial portion of the new book is devoted to how a 2018 fall led to a devastating arm fracture.
As Mr. Fox’s Parkinson’s has progressed, so has his discussion of its effects on his life. Forced to use a walker after he required surgery for an unrelated spinal tumor (talk about bad luck), he feels embarrassed. When traveling, Mr. Fox must now rely more on wheelchairs. His disturbing characterization of himself in a wheelchair — as a piece of “luggage” that no one can hear — likely rings true for others forced to use the device for mobility.
Those with severe illness will likely also resonate with some of Mr. Fox’s other limitations. He can no longer be spontaneous and embark on unplanned adventures. Stuck at home while his family goes out, he suffers from severe FOMO (Fear of Missing Out.)
Loss of memory, confusion, delusions and dementia…
Most poignantly, Mr. Fox also frankly discusses some of his newest symptoms, well-known to those with Parkinson’s and their loved ones: “loss of memory, confusion, delusions and dementia.”
“Where are my car keys?” asks Mr. Fox with his characteristic wry sense of humor. “Oh, yeah. I can’t drive anymore.”
The most insightful portion of No Time Like the Future, however, is when Mr. Fox, now dealing with serious disability, questions his own early optimism about the course of his illness. Has he downplayed the devastating effects of Parkinson’s? Has his foundation promised too much?
“Have I oversold optimism as a panacea, commodified hope?” he asks. “Have I been an honest broker with the Parkinson’s community?”
But in traveling from denial to hope to reality, Mr. Fox is just like every other patient dealing with neurological deterioration, cancer or other debilitating illness.
Indeed, Mr. Fox upbraids himself for his arm fracture, which occurred while he was still recovering from his spinal surgery and after he had foolishly told one of his daughters he felt safe staying by himself. Such acts of bravado, sometimes successful and sometimes not, are a familiar gesture by those growing increasingly infirm and seeking to maintain their independence.
To be sure, No Time Like the Future is no roadmap for people with Parkinson’s. Every case of the disease is different and may respond to different therapies. Just because Mr. Fox took a certain medication does not mean it is a good choice for you. Most patients cannot gather some of the world’s foremost disease specialists in the same room to contemplate the best treatment strategy.
But in frankly confronting the highs and lows of his illness, its impact on his life and his gradual deterioration, Mr. Fox has done all patients — present and future — a great service.
Barron H. Lerner, a professor in the Division of Medical Ethics at NYU Langone Health, is the author of “When Illness Goes Public: Celebrity Patients and How We Look at Illness.”