My hero, Michael J. Fox, turned fifty-eight on Sunday, June 9. I don’t use the word hero often, but he’s one of mine. Michael was just twenty-nine years old when he was diagnosed with PD in 1991. He has now been living with Parkinson’s for over 30 years. When I think of what he has contributed to the world of entertainment and the world of Parkinson’s, and the personal impact he has had on me, I could not be more grateful. I read somewhere once that the three things Michael did that had the greatest impact were:
He disclosed his illness.
He started the Michael J. Fox Foundation (MJFF) for Parkinson’s Research.
He went back to work.
I couldn’t agree more, and his example is one I try to model my life after.
I have written before about the decision to disclose any illness in one’s professional life. For me, disclosure has now gone far beyond simply telling my clients I have PD. The level of transparency I have committed to necessarily comes with a loss of privacy. When I work with the MJFF, it is clear that everyone has great respect for Michael’s time and energy. Despite the fact that he’s a genuine hero and an icon, he’s also a man, and a husband, father, brother, and son. He has shared so much—as a celebrity and as a Parkinson’s advocate—and is still at the ready to do more, but he does have a full life, after all, and needs to keep parts of that life to himself.
Of course, I’m not famous. Only “HR Famous.” Being open has meant that a lot of people ask me questions about my health and activities and decisions.
I am comfortable answering almost anything, and I welcome the chance to educate people about PD. But it can sometimes feel like you “owe” people every aspect of your experience. Learning how to strike a balance between sharing and feeling exposed is another challenge that Michael has navigated very well.
In 2000, Michael and his team started the MJFF with a single, urgent goal: to cure Parkinson’s in our lifetime. His co-founder and first CEO was Deborah W. Brooks, a Wall Street veteran, who brought her business and finance background, as well as her strategic leadership, business acumen and entrepreneurial approach, to the MJFF.
The foundation is efficiently run, with 88 cents of every dollar donated going toward PD research, and most people might be surprised to learn that 100% of the money raised by its grass-roots “Team Fox” members goes directly to research.
As a Team Fox member, I have raised tens of thousands of dollars for the foundation, and soon I will be sharing details on this year’s “HR Gives Back” effort. When the foundation was established, there were zero drugs in the pharmaceutical pipeline for PD. Now there are dozens, focused on various symptoms and potential disease-modifying treatments (a/k/a “a cure”). One of the first drugs developed through these efforts came to market early this year. It’s a nasal “rescue” spray for the “crash” many patients feel as they cycle throughout the day, from the on period, when their medicine is at its most effective, to the off period when their medicine’s effect is waning. This nasal spray is already making a profound impact on the quality of life for PD patients.
Last week while attending a business event, I had an interesting conversation with colleagues about my increasing transparency by writing this blog. The decision I made to be this transparent was a conscious choice, and one that felt absolutely necessary. Six years ago I first felt moved to share my diagnosis, and now I am taking disclosure farther. My life has recently taken a new turn since I’ve been given the green light to have DBS surgery. I felt moved to share my journey—mostly for myself, I might add. It just felt easier to share it than to hide it. But this comes with some cost as well.
I will never fully know what I missed out on because some people knew of my illness, or were scared of it. Events not invited to. Speaking slots not awarded. Meetings held without me. Jobs not offered.
Yet I rarely worry about this, because people holding that kind of conscious or unconscious bias are likely not people I would enjoy working with anyway, or are not people who would help me achieve my full potential.
A Birthday Wish
Although I don’t know Michael J. Fox personally, I’ve shaken his hand twice, and had one amazing Fan Girl moment with him (pictured above). Note the look of rising panic on his face as I babbled incoherently, and probably too fast and too loud, telling him how much he meant to me. (I am so smooth!) But my wish for his birthday is for his legacy to be one of finding a cure, and to have my own life be part of the last generation for whom PD is a chronic illness. We’re getting there. We’ve named the beast and disclosed its presence. We’ve banded together to find a cure. And we're back to work, sharing our message, supporting each other, and getting on with the business of life.