Dear Mr. Saget: Thank You Is Not Enough

On January 9, 2022 the world lost an incredibly kind and giving man and I am in mourning as if he were a family member. Bob Saget, actor, comedian, philanthropist, family man, beloved by many is gone and as I sit here two weeks later, I am still awash in grief.

You see, Mr. Saget did not know me, but I certainly knew him.

I was diagnosed with scleroderma at the age of sixteen in 1980. The fact that I am still here in 2022 is a genuine miracle. Initially, there were consultations with specialists, doctors, and it was determined that my condition could either be incredibly serious or simply result in much ado about nothing.

In my case, the doctors were neither fully correct nor incorrect. It did not go away. My body faces significant challenges every day, but all in all, I have done well. My lungs remain functional, my hands are not ulcerated, and I am living as well as possible. I know that I am one of the lucky ones.

During my early twenties, I was briefly involved with the Scleroderma Foundation and then I just went about living my life. I always kept up with the latest news, research, and that is how I learned about Mr. Saget’s personal experience with scleroderma.

In 1992 Bob’s sister Gay was diagnosed with Systemic Scleroderma and she died two years later. Sadly, she had the worst variant of the disease and it ruthlessly advanced, killing her quickly. In a recent interview, Saget discussed how he and his parents were there when she passed away and they all felt the moment when her soul left her body. He later directed a movie titled, “For Hope” based on his sister and her fight with scleroderma to raise awareness of the disease. I remember watching it and crying for her as well as myself.

Let me be clear: I never feel sorry for myself. I do not see that as an option given how much better I have it in terms of the trajectory of my illness as compared to others. Most of the time I focus on gratitude and optimism.

However, being chronically ill is a daily challenge and a tightrope walk between hope and fear. And sometimes fear is omnipresent.

No matter who you are the struggle just gets to you at times. Your body and heart can get bogged down and weary. Maybe I am tired of struggling with how to dress because my skin is painful every day. Perhaps today I want to eat like everyone else instead of me, meaning eating a giant salad versus softer foods eaten in small amounts. I wish my eyesight had not been impacted, and so on.

Some days are just really hard.

So, I adjust, I compensate, and I keep putting one foot in front of the other. I also realize that I am not alone in my struggles. Every person I know is or has faced almost debilitating challenges at various points, whether it involved their health, family members, or other personal challenges.

In those moments when I get tired or down, I always take solace in the people who have been tireless in their support and kind spirit. This includes the people I know as well as those I have never met.

At the top of the list was Mr. Saget.

Once the illness became part of his family, he used his star power to enlist other powerful people like Robin Williams, Whoopi Goldberg, Billy Crystal, and the like. They performed, they raised millions for scleroderma research, and they supported their good colleague and friend.

And in turn, through him, they all supported me and those like me. Without knowing me or my scleroderma journey, they gave me a lot.

For this, I am forever grateful.

But I cannot shake this feeling of loss regarding Saget’s death. As I said earlier: I am bereft. I had been following him on Instagram and saw how he was enjoying his shows in Florida. Suddenly, he is gone.

I wish I had gotten a chance to thank him in person.

I have a theory that I am including in a larger piece that I am writing: my theory of concentric circles. I feel each one of us exerts positive influences on people we know, but also people we do not know. Daily acts of kindness, our lifting others up, I believe each of us puts goodness into the world and, like concentric circles, we overlap, helping others whom we have never met in ways we do not necessarily see or realize.

I do not know if he fully knew it, but Bob Saget did exactly that more than hundreds of times over. His commitment, his kindness, his willingness to continue working on behalf of scleroderma research long after the death of his sister helped more people than he may have imagined. Including me.

He strove to make my life better as well as those of my fellow scleroderma warriors. We all owe him a great deal of gratitude and certainly, he is missed.

In the past two years, I returned to becoming involved with the foundation. I currently serve as a member of the Advisory Committee of the Rocky Mountain Chapter of the Scleroderma Foundation. I suppose my tribute to him will be the work I do in the months and years ahead to lift other scleroderma warriors and their families up as we raise awareness.

Bob Saget will continue to inspire us. I hope those who loved him know and understand the depth of what he meant to those of us in the scleroderma community.

As I prepared to write this piece, I discovered that Mr. Saget was a Temple University alumnus; I hold a doctorate from Temple University. He not only touched my life with his advocacy, but he was also a fellow Owl. That makes me smile through my grief.

When I was a child, I loved the song “Here Comes the Sun” and came up with the idea that when you could see the rays of the sun hitting the earth it was at that moment God was bringing people up to heaven. It’s a belief I still hold on to and I always smile whenever I see them.

The next time I see the sun’s rays, I will say an extra prayer of thanks to Mr. Saget and his family.

Wherever you are, Mr. Saget, I hope you are shining in the sunlight along with your sister. Thank you for enriching my life and the lives of others like me more than you ever knew.

In our grief, we must always remember that even in our saddest moments, tomorrow the sun comes anew.

And one more thing: Go, Owls!



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