I’m terrific….other than a touch of ALS

That’s a quote from Jay Fishman, former chairman of the board and former CEO of Travelers Cos. Inc. who was diagnosed with ALS at age 61. He was a well loved leader of his company as well as a leader for ALS patients. My cousin AnnMarie is vice president, Field Management Operations for Travelers in Hartford, Connecticut. She spoke to Jay about my diagnosis and was working with his administrative assistant on setting up a teleconference for Stan and me with him. He was eager to speak eith us.Eight days later she emailed that he died on August 19. 

Just a few weeks before he died he was a big force in the Travelers Championship golf tournament in the Hartford area. He was chairman of the title sponsor company in its 10th year and also co-honorary chairman of the tournament. 

The tournament’s main beneficiary charity was the Hospital for Special Care in New Britain, CT, which cares for about 250 ALS patients. On Friday night of the tournament weekend a fundraising dinner was held for the Bruce Edwards Foundation and raised over $1 million. Bruce Edwards was golfer Tom Watson’s caddie for three decades until he was diagnosed with ALS. 

Watson spoke at the dinner and called Edwards “the Arnold Palmer of caddies”. He spoke of his promise to Edwards, that for the rest of his life he will raise as much money as he can for research for this disease. He said that Edwards lived life to the fullest and there was a lot of love for him.

At the tournament there was a special tent set up for ALS patients, with medical equipment and feeding supplies. AnnMarie said that Jay spent most of his time in the patients tent.

Jay Fishman would only be honorary chairman of the tournament if he could have another ALS patient as co-chair.In the picture he is shown, as AnnMarie speculated, deflecting attention from himself and onto Brian Savo, his co- chair.

I want to share some quotes from Jay Fishman that I find very inspiring:

“That’s leaning in to the disease. Accepting gracefully, yielding gracefully. You can’t fight the disease. You can’t beat it. You don’t win. But what you can do is yield elegantly. Planning for it, thinking it through.”

“You stay engaged or you stay in bed.”

“The hardest thing for me was really internalizing that six months from now I’ll be worse. I will eventually stop breathing. So I am not in denial at all…As it relates to what I can and can’t do, I’m much better taking it one day at a time.”

“This is how my life ends. It is not what my life is or was.”

“If you asked me six months before I had this disease to sum up my life I would tell you that I was one of the luckiest guys in the world. So many good things had happened to me, more than any one person deserves. And honestly, I swear to you it’s true, I feel exactly the same way today.”

That last quote has echoes of the famous lines spoken by Lou Gerhig when saying goodbye to his fans at Yankee Stadium. It was hard for me to understand how someone with ALS could say that. But as I look back over my own life, I see that it has been an incredibly interesting journey. 

I decided to paraphrase Jay so I programmed “I’m doing great…with a touch of ALS ” into my speaking tablet.

Credit for the Jay Fishman quotations: The Hartford Courant 

3 thoughts on “I’m terrific….other than a touch of ALS

  1. Hi Meg – this was so very interesting to read and speaks to the choices we all have in how we respond to difficulties in life. I have an ongoing discussion at work with a colleague about the characteristics that create, or maybe embody ‘resilience’ and hence, in many cases, success in achieving goals. As you know, I went through a difficult time when Alan and Kieran passed away in 2000; I had also lost my best friend to cancer when I was 28, and then my cousin to ALS in 2004. Over the last two decades, I have spent alot of time reflecting on life, and death.

    One of the best descriptions for what I’ve gone through is this very short poem/saying that I came across many years ago: Grief makes me think. Thinking makes me wise. And, wisdom makes me strong.

    Thank you for continuing to write this blog. Every week, it is helping me think about the challenges you and others are facing, AND also your successes and the way that you are engaging with this challenge – facing it head-on so to speak. And for that, you have my utmost respect.


    Liked by 3 people

  2. You and Stan are inspiring. Stan with, “Never been better.” (I have borrowed that one.) And now your, “I’m doing great…with a touch of ALS. Love you, running buddy.

    Liked by 2 people

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