The new face of chronic illness

Screen Shot 2015-02-08 at 12.58.32 PMMichael J. Fox’s new book

I just watched Michael J. Fox in his appearance on the Oprah Winfrey show this week. Yes, working for myself gives me the liberty to take a break at 4 P.M. and recharge my batteries. 


Fox is an emblem of living gracefully with chronic illness. If you don’t know, he’s had Parkinson’s disease for the past 18 years, and looks just as youthful and boyish as he always has. Just now he shakes–a lot. Oddly, he said, the shaking is not from the illness, but rather the medication for Parkinson’s. If not for the medicine, his muscles would freeze. But there’s certainly nothing frozen about his mind, his enormous optimism, or his activism. 


Fox has gone to Washington repeatedly to seek funding for stem cell research and Obama has just passed legislation to make that possible. Of course where was Fox? Not in Washington, but climbing the Himalayas in Bhutan. He joked, it’s not so easy to get out of the Himalayas at a moment’s notice. He also told us that while there his disease affected him less. He could breathe more easily, odd because such altitude usually hampers breathing, and his muscles moved more fluidly. We also saw a demonstration in a segment of him playing ice hockey: he looked little different than his younger self who was an amateur player growing up in Canada.


Part of Fox’s appearance was also to promote his new book, Always Looking Up: The Adventure of an Incurable Optimist. And that was the face of illness that we saw: someone who is accepting, living fully and treasuring each small moment with his wife and children, someone who even savors the turn his life has taken saying if this hadn’t happened, he wouldn’t have met the amazing people he’s met and done the amazing things he’s done.” And, we got that he feels his life has been enriched. 


Some days he has more trouble tying his shoelaces than others or his medicine kicks in too slowly to avoid an incident he would not have asked for, but he said that vanity was the first thing to fly out the window once his symptoms began to show. And that he is not afraid, but eating life. 


As Fox says, “Parkinson’s doesn’t define me, it’s just one part of my life.” He also tells his children when they ask about his shaking, “My brain doesn’t work the way yours does.” How simple those few words are. So simple, a child can understand, and it leaves judgment out the door. It’s we adults who have to struggle to see past the jerky movements and our assessments based on outer appearances. 


Well, my pancreas doesn’t work the way yours may, so I’m a little different, not damaged or less than. That thought gave me a new window from which to see my diabetes. I think Fox truly is inspirational and an example of how to live with a chronic illness. He wears it well and so can we.

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