Alzheimer's Foundation of America

Foundation of America

Dramatizing a Dramatic Diagnosis

A Conversation with Sam Simon

Trained as a lawyer, Samuel A. (Sam) Simon started his career as a member of Ralph Nader’s first legal advocacy group in Washington, D.C. He went on to start his own consulting firm and became a regular commentator on national news programs. In 2018, he was diagnosed with MCI (Mild Cognitive Impairment). In 2021, he was diagnosed with early Alzheimer’s disease. He has written and is performing a play, Dementia Man: An Existential Journey, about his experience with the disease.

Your background is in law and public affairs. How did you come to write your first play, The Actual Dance, about being the spouse of someone living with cancer? You went on to become a playwright and performer.

I was taking improv classes with a theatre group in New York in 2000 when my wife was diagnosed with advanced breast cancer. We had been married for 34 years. I had to come to terms with it. She was not supposed to survive. One improv exercise was to stand up and talk for 20 minutes. In that 20 minutes, I began talking about something I had not realized was in me. It’s what I call “spiritual trauma.” I had an experience that I needed to talk about. Theatre enabled me to find an outlet for it.

Fortunately, Susan did come through her cancer. Now you have a different diagnosis to deal with and have again turned to dramatic expression.

Yes, my diagnosis of Alzheimer’s. It never occurred to me that I could write and perform a play with Alzheimer’s. A theatrical friend and colleague, Gail Schickele, who markets solo artists and who was a fan of my work, encouraged me. She had seen The Actual Dance. I can’t tell you how energizing it is. I have a huge need to change the narrative around and reimagine the use of that dirty word “dementia” and the stereotypes. This feels like the most important work of my life. My mission is to make it available to everybody who needs it. I believe in the power of the arts.

Theatre discovered me through the role of being a caregiver of the wife I was expected to lose. It’s a privilege to be there for that person. Now the shoes are on the other foot.

The preview portion of Dementia Man that you have finished was showcased in January at the highly selective Association of Performing Arts Professional Conference in New York. What was the reaction?

It had an extraordinary reception. I held the script because I didn’t have it memorized. The playwright Jeffrey Sweet said, “Keep the script. It becomes part of the show. When you got on the stage and talked, we heard you. We didn’t notice the script.” It makes sense in the context of the play. I was humbled by the feedback and encouraged to get this out there.

“I am now at the five-year mark from the
initial MCI diagnosis. We have since
learned a lot more about Alzheimer’s.
And I can sense things getting worse.
It raises the stakes on what to do next.
What are my choices?

. . . Maybe, I should stick around, and
figure out how to live a meaningful life
as a deeply forgetful and confused
person. Maybe I can cause trouble, and
advocate for the world to accommodate
me as I will be. I have been a
troublemaker most of my life.”

Excerpt from Dementia Man

Your character describes your shockingly insensitive treatment by your first neurologist. When you asked, “What’s next?” he replied, “There’s only one future for you, down. Things will get worse.” What do you have to say about that now?

The neurological world is profoundly broken. I experienced Susan going through breast cancer. People were there to help. There were support groups. There was literature. With my diagnosis of dementia (I prefer “neuropsychological disease”) it was, “Get your affairs in order.” I wasn’t told about any support groups. It was about as stark a contrast as you can get.

What’s next for you and the play?

I’m delighted to report that Dementia Man, An Existential Journey, has been selected for premiere in the Washington, DC. Capitol Fringe Festival in July 2023. I’ve already had one reading at community center, and, in May, ANDTheater Company hosted a work-in-progress performance in New York. We received terrific feedback that we will use to keep getting better.

My goal is to show that even with a cognitive disorder it is possible to live with dignity and have a meaningful life. I am so animated. I’m in the early stages and every day I learn something new. There’s no doubt I’m impaired but only mildly impaired now.

I’m not going to walk away from my disease and feel sorry for myself. I will embrace the life I’m given. Choose life. That’s a bit of my faith. The cardinal rule of Judaism is to choose life. I’ve been made to use my disease to be useful to myself and others.

This article was adapted from a print version which appeared in AFA’s Alzheimer’s TODAY magazine.