In the early stages of Parkinson’s, Michael J Fox wrote ‘Lucky Man’, an expression of his hard-won optimism through struggling with his diagnosis. On a similar journey, it was a great influence on me. Now, with his mobility declining and carrying the scars of living for thirty years with a progressive condition, he was written another book. Has he been able to keep his optimism?
Michael J Fox was an icon of the 1980’s. A talented actor with tremendous energy, he played the High school time-traveller Marty McFly in the Back to the Future films. I was fifteen when the saga was completed, he was the cool older friend and mentor that knew about girls, guitars and how to stand up for yourself that everyone wanted to know or be. Our lives have followed similar courses since then. We have never met, but we share a special bond.
Unknown to me, we went through similar traumas at roughly the same time. After an investigation of a twitching finger and a sore shoulder, Michael was diagnosed with early onset Parkinson’s in 1991. At the same time, I was dealing with my own diagnosis of Friedreich’s Ataxia. As I was fifteen years younger, we were at different stages of our lives and faced different challenges. Michael was thirty, married, with a three-year-old son. It was the desolation of our bright futures that we both faced. I don’t think we’d have been much help to each other if we had gone through it together! In 1998, he felt ready to go public with his condition. It had taken him seven years to come through the personal wilderness of his own diagnosis, it took me six.
Written in the early stages of the condition, Michael’s first book, Lucky Man (2002) was his announcement that he was moving forward and it was a great influence on me. He had searched his soul and confronted his future. He had just stopped drinking and came out fighting. Similar to my own life at that time, he was living with relatively few restrictions. He was still flying, taking family holidays, driving and working on film and TV. He appreciates his family and makes a time-traveller’s promise to ‘be more present’. For me, this book was a reaffirmation of my own decisions to ‘live for every day’ and ‘choose my friends carefully’.
Much of his optimism for the future was channeled into the Michael J Fox Foundation which he had just set up. The foundation has made a huge contribution to Parkinson’s research, raising over $100m, but as yet, as with my own condition, there is no cure. I didn’t appreciate the importance of being involved in the organisations that work to raise awareness of and find a cure for our conditions. This certainly influenced me to begin my own life-changing association with Ataxia UK when I retired in 2012.
As time marched on, I would see Michael appear occasionally on tv shows. A recurring character on ‘Curb Your Enthusiasm’ as Larry David’s neighbour exploring stereotypes of disability and the awkwardness of people who just don’t get it. He also appeared as a lawyer on ‘The Good Wife’, using his disability in the courtroom to influence juries. In both, he appeared as himself. Physically shaking, his speech slurred and slightly slower, as he is putting extra effort in to saying each word. Not afraid or ashamed of who he is. There would be the occasional buzz in the media from the excellent work of the foundation. His tv appearances became more and more rare. Then the news got worse. He was diagnosed with a tumour on his spine and faced major surgery to remove it, he was falling and injuring himself and he had retired from acting for a second time.
When he released ‘No Time Like the Future: An Optimist Considers his Mortality’ last month, I was very curious. It’s all very well being optimistic about your future when you have just been diagnosed. How did he feel now his condition had progressed significantly? I wondered how much of his famous optimism had deserted him? I thought about my own optimism over the last twenty years; how it has shifted from desperate hope for myself to more pragmatic hope for others, I really hoped that it was the same for him.
The latest book begins with Michael on the floor after a bad fall. Still rehabilitating from recent surgery, he is alone and in some pain with a badly broken arm. He enters that dimension where, after a fall, your mind empties of everyday worries, memories flash past and you begin to think deeply about how you got there. Is this what dying is like? The book flits from memory to memory, settling only briefly on each before concluding with dry, insightful humour and moving on. I wonder if the book was cleverly structured to emulate this.
One that particularly resonated with me was Michaels’ love of dogs, and talks lovingly about what they mean to disabled people. He echoes my observation that our dog-friends restore a link between disabled people and others around them. I have written about our adventures in my blog-post ‘My Support Dog Saved Our Lives’.
There are a big differences too. My experience of disability has been highly politicised. I see disability as a struggle for identity and railing against a force that marginalises and pushes disabled people into poverty. It is as a part of a wider class-based struggle for equality. Michael is a plucky, freedom loving Canadian, and lays out his democrat credentials early on. He attends a White House dinner in the eighties and is surprised at how, as a democrat, he actually enjoys Ronald Reagan’s company. He is not afraid to enter the political arena. He supported democratic candidates with pro-stem cell agendas in direct opposition to President George W Bush in the 2006 Congressional mid-term elections. I am acutely sensitive to language. Michael uses the term ‘disease’ comfortably throughout the book. I don’t like it because of the meaning attached to it. It is central to the way others see us, and more importantly, the way we see ourselves. Oddly, the book does not even approach these important aspects of disability at all.
Why? The Americans with Disabilities Act (1990), which Reagan’s Republican administration actually supported, enshrines the principal that society creates and worsens disability. This is the Social Model of Disability, we are still waiting for this approach to rights in the UK. Or perhaps my class-based view of disability is simply not relevant in the US. I would love to ask Michael for his takes on disability in politics and language.
He has undoubtably had a tough time since. He was diagnosed with Fibromyalgia, he recounts the complex surgery to remove a tumour on his spine in April 2018 and the months of rehabilitation that followed as he learned to walk again. His attitude as a stubborn fighter puts his optimism and his sense of humour to the test. When discussing the implications of his recovery on his Parkinson’s with the surgeon, Michael asks innocently “I have Parkinson’s?”
Then, when Michael is recovering well and his independence slowly returning, we go back to the kitchen floor. Michael is taken to hospital and undergoes emergency surgery. The prognosis for his badly broken arm is good and his spine is undamaged. But he has had enough. The shame, the frustration, the anger all come back. His famous optimism fails. “I couldn’t just put smiley sticker over it this time.” he admits. That is what the fall left him with. I recognise it as that crushing blow to your self-confidence, that vivid flashback of that particular failure whenever you attempt a similar feat, that underlying fear that settles in your sub-conscious. Michael quotes hero and depression-era US President, Franklin Delano Roosevelt, “Only a foolish optimist can deny the dark realities of the moment.” (1933). Michael had already faced down his own grim realities, but now they were back.
His work with the Michael J Fox Foundation and a chance encounter with a stranger help him begin to process this new-found fear. Fox Insight has enrolled 50,000 participants giving their experiences. Most recently 7,200 contributed their experiences of Covid19, enabling researchers to better develop their responses. He meets an ex-serviceman with Post-Traumatic Stress Disorder who tells Michael that he has helped him adapt to life with a disability. He is influencing, leading, inspiring other disabled people – and as I have found, this changes your focus and makes you stronger.
Michael is older and wiser now, his kids have grown up around him, older members of his family have passed on. There has been a lot to learn. I think what has really been key to maintaining his optimism is the confidence gained from his natural understanding of the social model of disability. The kind you develop from years of living with a disability and being around clever people who do too. For him, his impairment is a challenge, but his Parkinson’s does not define him. He knows his kids see what he can do, rather than what he can’t, he sees a wheelchair as a tool to make his life easier and he retires from acting with reason and good grace. Explaining that he acting doesn’t owe him anything, he is grateful for the amazing experiences and opportunities it gave and accepts it cannot give him any more. I like how he does this; it is not that he can’t do the acting, it’s that acting no longer works for him. He takes the same attitude to playing golf, something he loved with a passion. As with me, his work with others with his condition has helped to re-shape his optimism over time.
Beyond that, he reconciles himself to the fear he feels after his recent fall by tempering his boundless optimism with gratitude. He visits the past for wisdom, lives in the present and is happy to keep the future as a mystery. I think this is the absolute best outlook that anyone with a progressive condition can have, and it’s very close to my own. Although our journeys were different, we seem to have arrived at similar places. His optimism is still there and I’m really pleased for him. Optimism and gratitude is how we will get through the pandemic, and how I will try to continue living with my Friedreich’s Ataxia.