Stacy Joy Goodman passed away in her sleep last night.
Those were the words as they were relayed to me 23 years ago, this date, and it still shakes me to this day. The world outside of diabetes, was not too unlike it is today. Nelson Mandela became inaugurated, a President visited other countries, the NY Rangers would win the Stanley Cup, and new shows entitled ER and Friends would debut. The world continued. But within this local diabetes community, the world changed forever. Stacy was 17 and had type 1 diabetes.
We were only into this ‘diabetes journey’ about a year and a half. I was very new at an organization called JDF (now JDRF) as their first Long Island Executive Director. The volunteer leadership involved, who hugely intimidated me with their business successes, I knew I was in way over my head. Me, as an ‘Executive’ ANYTHING seemed silly at best. I was 35 and this ‘fundraising for diabetes’ was so new for me. Geez Louise, I was an actor, not a fundraiser. I had done some fundraising in my life and surely got the knack how to get things done, but THIS, with the passion and the huge amount of these wealthy individuals, was so very new to me.
Since that time, many of those very same people became my closest friends in this fight. But in 1994, the day Stacy Joy would pass away, we would all be crushed. There was no instant news across the world via any social media. If something happened it either happened in your back yard or it took weeks before you would even hear of something like this. This did not happen in our backyard—-it happened right inside our house.
This was new to me, the realization that this disease could actually take a life. ‘Things’ that happened would happen to others, much older, not to us….our kids involved in the chapter were 17, 15, 22, and (at the time) mine had just turned 4, and having diabetes since she was diagnosed at age two. But not for a second did I ever think this disease could actually take a child……or that it WOULD take a child.
Stacy’s mom was the Chapter President. Her dad and his wife were out-of-town. There was screaming, sadness, and tears………oh so, so, so, many tears. A short time after the funeral I remember sitting at my desk. It was about 8:30 pm and everyone had left the office hours earlier. I was staring, staring straight ahead. Tears rolled down my cheeks. I. Was. So. Angry. The realization came to me in a two stage thought process; it was clear to me now that this disease could take anyone it wanted. Anyone. The second thought process was that there had to be an equalizer in this disease. I had to do more for my own education and to try to bring people to the table who could help end this disease forever.
Somewhere out there was Stacy’s dad. Our roads had crossed minimally at best. This is where al of our world was changing because Marc began a mission. His daughter had a strong liking for the medical field. Marc was determined to find the best place that was on the receiving end from the organizations out there. Who were they funding and why? He literally searched the globe. The many organizations raising money to fund research were great but Marc wanted to be where the science was occurring and who was the best at it.
It was a time where one did not just ‘google’ anything—-one had to visit in person. And Marc and his wife, Esther did just that. Again, again, and again. Stacy deserved that effort. They landed at the Diabetes Research Institute at the University fo Miami. It was rare (still is actually) for a place to be single-focused on curing type 1 diabetes. But that was (and still is) their mission. Their goal.
But the point of my story today is about Marc (and his wife Esther). Over the years, whenever it seems that I’m overwhelmed, I think of them. On this date, 23 years ago, they could have disappeared, who would have blamed them?
But they did quite the opposite.
They threw themselves completely into this battle. A battle that would have absolutely no chance of helping their daughter. But to provide the hope that one day to create a possibility where no one would have to undergo what they went through. To be given a hope that some place was out there completely driven to accomplish their single goal to cure this disease. Marc and Esther joined the (DRIF) Board and stayed with it until he was Chairman. And when he was done in that position, he stayed with it still, going back on the board. And still to this day he serves.
But yet it’s Marc’s eyes when he talks about the things that might have been for Stacy Joy, and when he looks you straight in the eyes and says, “We will change this.” And he believes today as when he first started his mission shortly after Stacy’s death …….and one will believe him. Because when one hears his story and what he has done to advance research forward and what he has done with absolute sorrow in his heart…..well that will humble one…….right down to their very knees at night when they pray. I know this because I am one.
I was there the day Stacy Joy passed and I am here today for my kids…..and when I ever need a reminder I merely glance over at my good friend Marc Goodman, who reminds me as he continues on his journey, reminds every researcher, and reminds anyone else who is in this fight………that actions speak louder than any spoken words and Marc’s actions have shaken this very diabetes world still to this day…….and we are all better off for it. But to thank someone who has lost so much seems futile to me; to do it to Marc, or Esther, or Jane, or Michelle, or Bob, or Jen, or anyone else who has lost their child…..seems so empty; so I honor all fo them every day the best way I am able, by staying at it with every ounce I have……..it’s the absolute least any of us can do.
I am a DiabetesDad.