Guest blogger Carey Christensen is inspired by Michael J. Fox’s many roles — actor, celebrity/icon, Parkinson’s patient and advocate/activist.
I saw Michael J. Fox on the Golden Globe Awards this month. As a fan, it was fun to glimpse him in the glittering Hollywood crowd, enjoying his family and the occasion. I was excited to think of his new sitcom premiering on NBC this fall, happy that he’ll be back on TV doing what he does best — making people laugh. I admire his courage in returning to a job he loves, I’m encouraged that he was able to find the right medication regimen to do so, and I’m glad he’ll be portraying someone with Parkinson’s.
As a member of MJFF’s Patient Council, I saw Michael as the man who just a few months earlier had sat with us around the conference table at the Foundation’s office in New York, talking about his goals for research, his optimism, and his conviction that we will be successful in our pursuit of a cure. Yes, I was awed by his super-star-ness, but his down-to-earth manner made conversation easy, and his super-smart-ness compelled me to listen when he called on us — and the worldwide community of patients — to be “relentless, annoying, and disruptive” in our search for answers. As a patient activist, I value immensely Michael’s encouragement to remain never-satisfied until the cure is found, and his words will continue to ring in my ears as I meet with members of science, medicine, industry and government groups working toward breakthroughs patients need. I’m inspired to realize that Michael’s Foundation considers my experience a necessary element of a process and conversation that too rarely includes patients.
Back at the Globes, Michael was laughing as Tina Fey and Amy Poehler made him the subject of one of their jokes. I couldn’t help looking at him with a patient’s eye, seeing the tremors, twitches, and stiffness controlled, but still noticeable and familiar, even in that sparkling crowd. I thought about another moment at an MJFF Research Roundtable in New York City last November. Attending with an old friend and fellow PD patient, I listened as researchers and clinicians updated the audience on the latest developments and promising next steps in Parkinson’s drug development. Halfway through the program, my friend struggled to sip from her water glass — her stiffness and tremor inhibiting a simple action that most people never have to think twice about. Suddenly, a hand appeared between the two of us, offering a straw. It was Michael, who had been seated behind us. “This helps me sometimes,” he whispered, with a comforting hand on her shoulder, then walked back to his table like it was nothing. Just enough help at just the right time. (My friend kept the straw!)
Michael J. Fox may be a Hollywood icon, but ultimately he’s also one of us. And he launched a Foundation that keeps us — patients — at the center of what they do. Parkinson’s may well be “the gift that keeps on taking,” as Michael wryly puts it, but the opportunity to be part of this vibrant community is a gift, period.
Carey Christensen is a patient activist, writer and speaker, and member of The Michael J. Fox Foundation’s Patient Council. Diagnosed with Parkinson's disease in 1999 at age 41, she turned to advocacy in 2002 after losing her job due to the little understood non-motor symptoms of PD. She lives outside of Seattle.