Friday, January 15, 2016

The gift that keeps on taking

They say, "Don't look a gift horse in the mouth." But when Michael J. Fox deemed Parkinson's disease to be a gift, many people - especially those suffering from the disease - took offense at his choice of words. Nonetheless, Michael continued to describe Parkinson's as a gift, but with the following clarification:

“Because Parkinson’s demanded of me that I be a better man, a better husband, father, and citizen, I often refer to it as a gift. With a nod to those who find this hard to believe, especially my fellow patients who are facing great difficulties, I add this qualifier — it’s the gift that keeps on taking...but it is a gift.”
~ Michael J. Fox

A gift? Really? Can I return it then? Where's the exchange slip?
But there is no exchange slip in the box. It even came without wrapping. No, it appears that it is mine to keep. But what do I do with it now?

Michael certainly wouldn't have called it a gift the day he was diagnosed with what is usually known as an old man's disease. He was at the tender age of 29 and at the height of his acting career. He had wed Tracy Pollan, the love of his life, a few years earlier and they had already started a family. One might say that he was living a charmed life at the time. That is, if it weren't for his excessive drinking and workaholic habits that kept him away from his family and fed on his constant worry that it all would somehow dry up if he didn't keep pushing himself.

And then the sky fell in and the next day was the first day of his life.

Michael's immediate reaction to the diagnosis was to drink even more and take on even more projects to bury himself in work. At that point, it appeared that he had entered the early stage of denial - which lasted for the next nine years as he tried his best to hide this disease from the general public - even from his co-workers on the set of the hit TV series: Spin City, where he was filmed from every angle.

What changed, then? What brought him out of the closet?

"Humility is always a good thing. It's always a good thing to be humbled by circumstances so you can then come from a sincere place to try to deal with them."
~ Michael J. Fox

Michael's coming out had a great effect on the Parkinson community. Parkinson's was a disease that was generally pushed into the background. There was no cure for it. The most you could do was to try and slow it down. It was a disease that many felt ashamed of, because it was so noticeable and socially ugly. And here was Michael, whose warm and expressive boyish features had once won us over in Family Ties and Back to the Future, now exposing the haggard features of his Parkinson to the world - no longer feeling the need to hide his symptoms.

"Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it... I often say now I don't have any choice whether or not I have Parkinson's, but surrounding that non-choice is a million other choices that I can make."
~ Michael J. Fox

Michael was surprised by the strong positive reaction of the Parkinson community to his news. It was then that he realized that it was within his grasp to do much more. He set up the Michael J. Fox Foundation to provide significant funding for promising Parkinson research in the hope that it would lead to a cure. And he set out into the world, speaking at fund raisers and agreeing to give interviews to the media, so that Parkinson's might take on a new face in the public eye. He even continued his acting career, appearing in guest spots in many different TV series. All this, despite his being told at the time of his diagnosis that he might still have a good ten years of work ahead of him. And here he was, ten years later, about to set out on a crusade to find a cure for Parkinson. His work had just begun.

What can we learn from all this? A good friend of mine once said: "It's not the disease which is at the heart of the matter, but rather how we react to the challenge." It is what it is, and we must decide what we will do with it.

We never know how we will react to a situation until we are there. My father was diagnosed with cancer at the age of seventy-six, I was the first one to visit him in the hospital after he had received the diagnosis. "Well, I have had a good life," he told me. That moment has stayed with me ever since.

I am a recluse. I admit that. No matter how many people surround me at times. I am invisible to most. I know that most of this is my own doing. And when it comes to medical challenges, my immediate reaction is to keep it all to myself. This is a result of my upbringing - or at least a significant part of it. But that is another story. I will tell you about it when we know each other better.

As for now, it may be time to change. If Michael could change in his own way, so can I. For I am fortunate to be loved, and fortunate to be surrounded by such a beautiful family. And as long as I am not a heavy burden on them, there is still reason to pull myself out of bed on a cold winter morning.

Humility. Acceptance. Can we do without denial?
"How can you possibly leave yourself so open and vulnerable?" you ask.
"Have I? But you must realize that this blog is not about me. It is about Michael J. Fox."
"Yeah, right," pipes up a little voice from the back. "It's about you and Parkinson's."
"Okay, since we are in a giving mood, I will give you that," I respond. "It's about Parkinson's."

3 comments:

  1. A brave post and a thought-provoking one. Wishing you strength on your journey and more inspirational role models.

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