Michael J. Fox gives patients hope there may be a place that illness doesn’t touch

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Harvey Max Chochinov is a Distinguished Professor of Psychiatry at the University of Manitoba. His latest book is Dignity in Care: The Human Side of Medicine.

Still: A Michael J. Fox Movie was recently released by Apple TV+ and provides a ringside seat to the daily, formidable challenges facing the actor since he was diagnosed with Parkinson’s disease more than 30 years ago.

There is, of course, tremendous irony in this movie’s title, given Parkinson’s disease, a non-curable neurodegenerative disease that affects well over six million people around the world, denies those afflicted the ability to keep still. As was the case with Mr. Fox, it often begins with a tremor in one hand, which over time progresses to generalized slowness of movement, resting tremors and difficulties with balance resulting in falls. Stillness becomes a distant memory; a resting state of immobility that is no longer part of one’s repertoire. The film’s title has other resonances, including the idea of calmness and feelings of inner peace.

The closest we see Mr. Fox demonstrate that kind of stillness comes when he speaks about or is seen with his family. In those instances, he doesn’t seem to be contemplating the next quick-witted one-liner, or embodying the part of iconic actor or international Parkinson’s spokesperson and philanthropist.

In one particularly poignant scene, while expressing frustration with his physiotherapy routine, his personal trainer reminds him that he doesn’t always have to be Michael J. Fox. In other words, he’s told it is okay to let go of the public image, and the responsibilities and expectations that go along with it. It is one of the few times his sadness emerges without him attempting to deflect away from the pain. Rather than a clever rejoinder, he chooses silence.

There are times when finding inner peace within the midst of deteriorating health requires confronting anguish. Like grief, responding to illness-related losses can’t be outrun or circumvented. But that kind of being in the moment engagement, painful though it may be, can bring about a kind of calm that people sometimes speak of in terms of healing.

Mr. Fox says, “I couldn’t be present in my life until I found this thing happened to me that made me present in every moment of my life because it was shaking me awake.” Parkinson’s disease, without any benevolent intent whatsoever, forced Michael J. Fox to make room for Michael.

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I’ve spent the entirety of my career as a psychiatrist working with patients facing life-threatening and life-limiting conditions. My research shows that no longer feeling like the person you once were can crush a person’s sense of dignity and sap the desire for life itself. The challenge for patients facing illness-related losses is trying to locate and preserve core elements of self that define who they are.

Mr. Fox says, despite his illness, “I love my mind and I love the places it takes me.” I suspect those places haven’t changed much over the course of his lifetime; they are places teeming with wit, imagination and fun; and they are places where Parkinson’s doesn’t occupy any significant real estate. When asked to imagine his life a decade or two from now, Mr. Fox responds, with perfect, impeccable timing, “I’ll either be cured, or I’ll be a pickle!” That sounds exactly like Michael J. Fox.

I remember looking after an older woman with metastatic breast cancer many years ago. She was the matriarch of her family, and as I recall, ruled with an iron fist. Even as she lay on her deathbed, with a single wag of her finger, her family would jump into action. While dying broke her body and diminished her capacity, in spirit, she remained entirely herself, intact, formidable to the very end.

Parkinson’s disease hasn’t been able to occupy those extraordinary places within Mr. Fox, allowing him to maintain a sense that he’s still the same person.

For many people confronting enormous health challenges, remaining oneself is directly linked to meaning and purpose. As Mr. Fox puts it, “I wanted to be in the world and not take this and retreat from the world.” In so doing, he has made the world a better place, through his philanthropy – raising more than $2-billion for Parkinson’s research – through his mobilization of the Parkinson’s community, and now, with Still, through his honesty and transparency.

By showing us, unflinchingly, what Parkinson’s can and can’t break, he has given patients hope that there may be a place within themselves where they might take refuge, a place that illness mightn’t touch. This may allow them to get back to a future imbued with meaning, purpose and hope.

For that, we are all collectively in Mr. Fox’s debt – still.

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