Last week I watched the Emmy-nominated Apple original film Still about Michael J. Fox.
It was hard to watch.
Not because I felt bad for him; but because I could relate to him.
In high school, I enjoyed watching Fox as he portrayed Alex P. Keaton in the sitcom Family Ties, and who didn’t enjoy the Back to the Future films?
The Canadian actor had a gift of comic timing and was full of life.
In Still, Fox holds nothing back, showing the world his life today- his difficulty walking, talking, and living.
In 1998, when I first learned Fox had been diagnosed with Parkinson’s disease, I was shocked. He disclosed he had been diagnosed years earlier, in his late 20s. I thought Parkinson’s was a disease that affected older people.
While there were no similarities between my life and his, I remember thinking that even famous people get unexpected diagnoses and face uncertain futures.
At that time, I had been battling an unknown disease for years and had been forced to stop working due to my health. I was 26 when I became ill. My life was full until it wasn’t.
I didn’t follow Fox’s story closely, but I recall reading about his health struggles and watching news clips when he testified in front of Congress with Muhamed Ali by his side to raise funds for Parkinson’s research.
When asked why he went public and started the Michael J. Fox Foundation in 2000 to fund research for a cure, he commented:
“I wanted to be in the world and not retreat from the world. It made me realize what I still have to give.”
To date, the Michael J. Fox Foundation, which mobilized the Parkinson’s community, has raised nearly 2 billion dollars, an impressive feat.
But it took Fox years to come to terms with his disease. No one but family knew about his diagnosis for eight years, and after the public announcement, he did everything possible to hide the growing symptoms from his colleagues and fans.
When asked why he kept his diagnosis to himself, he said,
“You’re only as sick as your secrets.”
I knew exactly what he meant.
For years, I talked myself into feeling ‘fine.’ I reasoned that it wasn't there if I didn’t think or talk about it. I also was tired of having doctors dismiss my symptoms and tell me they were all in my head.
I kept my secret.
At one time in the film, Fox is clearly struggling to answer questions. He asks for a break to take meds and explains what happens when he goes too long without them. The interviewer asks,
“Why didn’t you tell me you’re in pain?” Fox answers:
“I’m in intense pain. I’m not going to lead with it.” Then with a chuckle and a half smile, “It didn’t come up.”
I chuckled with him, knowing I had done the same for years. I didn’t talk about my illness, how bad I felt, or how discouraged I was. It also didn’t come up. Nobody talks about illness. Even if they do know, they don’t really want to know.
I just did my best to live.
As the film continued, more similarities were revealed.
Discussing his thoughts about his diagnosis, he said,
“To me, the worst thing is to be confined and not be able to have a way out.”
I nodded along during this part.
For years I wondered if I would ever find a diagnosis or a path forward. I desperately wanted a way out.
Fox had a diagnosis, one that no one wanted. He knew what was coming down the road.
I had no diagnosis and no idea what was coming. In fact, it would take twenty-five years for me to learn.
While Fox lived expecting what the future held, I lived wondering what the future held.
We both saw our symptoms worsen and hoped for a cure. Fox had the notoriety to start a Foundation and make a real difference.
I don’t have the support of Hollywood or a foundation, but I still hope to make a difference. It’s why I joined the efforts of The Center for Lyme Action to raise research funding for Lyme disease. It’s also why I decided to start writing and talking about my illness and what I have experienced publicly. I hoped to help others.
Fox has lived more than thirty years with Parkinson’s, a debilitating neuromuscular disease that robs people of their freedom to move and speak.
I’ve lived for thirty years with neurological Lyme, multiple tick-borne diseases, and a rare autoimmune condition that also robs people of the freedom to move. It’s why those pretty yellow shoe boxes remain in my closet, but the shoes never come out. If you missed that post, you can read it here.
Fox continued working after his diagnosis, but it became more difficult to hide the worsening symptoms. He reduced his acting work and eventually retired in 2021 due to his declining health.
My decline was much quicker. I was forced to leave a career I loved and stop working within a year. I managed to return several times but had to change what I did and how I did it. I also never disclosed my illness and did my best to hide my symptoms.
As Fox said, “My fear was that they (the audience) would reject me and they would not understand it (my illness). That because I was sick, I couldn’t be funny…. I had to hope they could accept me.”
While comic timing didn’t matter in my job or life, I had the same fears.
Would I be rejected because I could no longer think on my feet and be creative?
Making It Real
During the film, Fox talks about the changes in how he thought about his illness. His comments again struck a chord.
“I can look at myself and say I have Parkinson’s. How do I wanna live with that….If I never get past the part where I wake up in the morning and I go that’s real, that’s happening; then I can’t get past it.”
I’m often asked how I overcame the adversity of my health challenges. How did I survive the 25 years of not knowing what was wrong with me? How did I get the courage to start over and talk about my illness?
I think Michael J. Fox would understand when I say,
“I have chronic Lyme disease and CIDP. It’s real, and it happened. Now how do I want to live with it.”
Fox continued to talk in the film as if I had written the words:
“The thing I learned is I couldn’t be present in my life until I found this thing happened to me. That made me present. Every moment of my life.”
It was at this point that tears began to roll down my face.
I remembered the times before I accepted what had happened to me. Instead of embracing what was, I was living for what had been.
I was afraid of the unknown.
What would happen to me? How would I care for myself and, later, my son, who depended on me?
While I didn’t have the answers, I knew I could no longer ignore my illness.
I had to embrace it and learn to live with it.
I decided to accept what had happened and make every moment count.
Like Fox, I’ve lived many moments of denial, acceptance, fear, and faith.
My illness forced me to be present and find a new way to live.
It called me to find a new perspective and let go of what I thought my life would be.
And while I still don’t know what the future holds, I know I’m still here, and I’ll fight to make every day count.
I wish the same for Michael J. Fox.
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Why Soulful Sunday?
I started The Power of Change to celebrate resilience and explore the potential to transform your life in meaningful ways.
Learning to be mindful is the first step. It helps you focus on what’s important every day.
You weaved your thoughts and those of Michael’s into a fabric that one can wrap themselves for comfort and strength for many difficult life issues. Well done, I am still here too.