The recent ruckus over Michael J. Fox’s advocacy of stem cell research has emphasized his supposed use of illness for political gain. Conservative critic Rush Limbaugh went so far as to accuse Fox of exaggerating his symptoms of Parkinson’s disease in pursuit of his political cause.
But lost in this controversy are a series of trickier – and arguably more interesting – issues. Just how is Michael J. Fox doing? Is his Parkinson’s really that bad? Is his advocacy of stem cell research for himself and other patients an idea whose time has come or the act of a desperate patient? And how does his celebrity status affect how we understand the disease he has?
Fox is not the first celebrity patient to become involved in debates over the treatment of Parkinson’s. In researching my new book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine, I discovered the story of Margaret Bourke-White, the renowned photographer for Life Magazine and other publications. Bourke-White, whose deft fingers had snapped pictures of the survivors of Buchenwald and of Mohandas Gandhi in the hours before his assassination, began feeling stiffness in her hands and legs in 1954 when she was 49. Within four years she had twice undergone experimental brain surgery, specifically the insertion of alcohol to purposely damage a portion of the brain known as the thalamus.
Bourke-White went public with her treatment in the pages of Life in 1959 in an article entitled “Famous Lady’s Indomitable Fight.” As a result, she became a source of information and inspiration for other Parkinson’s patients around the world. “The doctors here say there is no cure,” a West Virginia woman told her, “but your story made me believe there is some help and hope.” Bourke-White, however, spent the rest of her life debating whether the operation, which had initially seemed so promising, had actually been of value for her or for other patients with whom she corresponded. Subsequent studies showed that it did not reliably relieve symptoms.
Although Bourke-White was not embarrassed about her looks when she first got sick, her public appearances became fewer and fever as her disease progressed. This is hardly surprising. The most visible “celebrity patients” have always been those “doing well” or those who have recovered from their disease, such as Betty Ford (breast cancer), Magic Johnson (AIDS) or Lance Armstrong (testicular cancer). There have been a few celebrities willing to go public as they worsened, most notably the actors William Talman and Yul Brynner, both of whom made anti-smoking public service announcements as they were dying from lung cancer.
Fox’s recent appearances, therefore, are relatively remarkable given that he was not ashamed to show how seriously ill he apparently is. Whether his severe body swaying and jerking motions, which knocked off his microphone on the Today show, are due to inadequate medications (as suggested by Limbaugh), too much medication (as suggested by Fox) or just a rotten case of Parkinson’s is not entirely clear. But Fox is to be commended for not hiding behind the reality of his illness.
And it is clearly his severe Parkinson’s, more so than any overtly political agenda, that has made him such a strong advocate of stem cell research. In this sense, Fox resembles hundreds of other celebrity patients whose diseases have led them to become public spokespeople and advocates for more research funding and innovative treatments. Will stem cells prove to be a false hope, like Margaret Bourke-White’s brain surgery? Or will they produce great advances in a disease that is still relentlessly progressive?
Of course, it is politics that will determine whether or not we ever get answers to these medical questions.
- Barron H. Lerner