Samuel A. Simon: Tackling His “Existential Journey” Onstage in “Dementia Man”

Creativity can flourish for many people after an Alzheimer’s diagnosis, like Rebecca Chopp learning how to paint and Reda Harrison rediscovering quilting.

For award-winning playwright and performer Samuel A. Simon, navigating disease through theatrical storytelling was familiar territory. His first play, The Actual Dance, Love’s Ultimate Journey Through Breast Cancer, traced his experience as a care partner through his wife’s breast cancer. The play toured from 2013 to the present. In 2021, this play was turned into an award-winning biography.

When Simon was diagnosed with mild cognitive impairment and in 2021 with early-stage Alzheimer’s, his connections from the theater community encouraged him to take the experience from page to stage yet again. 

He used his experience in his previous play to develop Dementia Man, an Existential Journey. In the play, he shares his “existential journey” as he navigates diagnosis and living with dementia. He also imagines a future for the millions of others living with the disease and what that would look like. Directed by Thadd McQuade with dramaturgy by Gabrielle Maisels, Dementia Man, An Existential Journey made its world premiere at Capital Fringe in Washington D.C. in July 2023 and is the recipient of the 2023 Dementia Arts Impact Award by the Dementia Spring Foundation. He continues to tour performances of the play throughout the United States.

In conversation with Being Patient Founder Deborah Kan, Simon shared his experience with Alzheimer’s disease and performing Dementia Man, an Existential Journey. Read or watch the full conversation below. 

Being Patient: Your play is called Dementia Man. Do you know what type of dementia you have?

Samuel A. Simon: I have early-stage Alzheimer’s and a little background here— I live in McLean, Virginia. I’ve been in the Washington, DC, area since 1970 and have a fairly high-profile life. I came up in 1970 and graduated from law school to go to work for Ralph Nader. He was the person responsible for creating the consumer movement. I was lucky to go to work for him. 

I joke in the play that I was a troublemaker all my life, and going to work for Ralph was right in character. I was on the Oprah Winfrey Show once and all that stuff. That’s like 54 years ago; it’s hard to know. 

If you talk to anybody with cognitive impairment, the problems you may have been [going] even longer than we think. I remember— this would be like in the 2009 time frame— when I was just getting a regular checkup, and I complained to my doctor about my memory. He said, “Oh, I know you, you don’t have a memory issue. If you couldn’t remember what you had for breakfast, then I’d be worried.” I go, “Breakfast. What did I have for breakfast?” 

But he, interestingly, didn’t send me to a neurologist. He sent me to a psychologist. He did some things [and said] I might be mildly depressed. I [was] still working with my company back then, and I knew other CEOs, and a lot of them were taking this antidepressant. 

I don’t know if that was part of the problem. It was really around 2016, I say in a play, that I started having driving issues. Occasionally, there were some stark moments where I left a meeting, started driving, and I didn’t know I was on the wrong side of the road until all the cars coming at me started honking and [I’d make] a quick u-turn. 

Then it happened again, and then I was driving somewhere else, and in the play, I described it as losing cognitive awareness. The big symptom, the big thing that made me aware that something was wrong [is that] it was as if this entire right half of my brain was just black. 

“The big symptom, the big thing that made me aware that something was wrong [is that] it was as if this entire right half of my brain was just black.”

I went like, “Okay, what’s today?” I would look over here and just see infinity. It was weird, right? If you’ve never had something like that, you think it’s crazy. Well, it was crazy, but I once described it in my meeting with a neurologist, and they had a neurology intern there, and she said, “Was that real, or was that a hallucination?” I go, “Oh, it was real.”

They realize, of course, it’s not real. It’s a hallucination. Anyway, I went through that. By 2018, I saw a neurologist [I] was referred to for a lot of tests; one is the gold standard of cognitive testing called a neuropsychological test, which is five hours long, and they said I had mild cognitive impairment. I was mildly impaired, but they don’t know why. 

Being Patient: How old were you then?

Simon: 2018— that’s six years ago. I’d be 73. I’m 79 at the moment, and it took a while to find out why. To know definitively, you need one of these PET scans with contrast, three or four thousand a piece, not covered by insurance. We can talk for a little bit about how broken the neurology world is.

I’ve been in a high profile in Washington. We knew some people who knew some people. We got in quickly to Georgetown University Hospital, [and they] have a very strong neurology memory unit, and I went through their testing. They were able to get me in. At that time, the government was sponsoring something called a trial-ready cohort.

In other words, they gave the university money to run people with impairments through their tests so that if there is a drug trial coming up, they know exactly who might fit. They got me this PET scan with contrast. That’s what you need to get, and I didn’t have to pay for it. It showed I’m with amyloid positive, which is a symptom of Alzheimer’s. 

There are two things that make up Alzheimer’s today. Some people still think you don’t know until you’ve gone through an autopsy. That was true before we had all these X-rays, PET scans, and the like. I don’t have the amyloid proteins. They’re like black tangles in your brain, like black worms. I didn’t have them, so it’s in the early stages. It’s true that once you’re diagnosed with a cognitive impairment, you look back and see it coming.

Being Patient: Looking back now, what early signs did you miss?

Simon: The driving was the sign. I didn’t have that before— getting lost. They sound like little things. I was at a traffic circle and had gone to get gas at a gas station right off the traffic circle. I couldn’t figure out how to get back on. I was there, and I didn’t know what to do. The back end was to a shopping center parking lot. I had to go to the parking lot of the shopping center and come up on a regular street to figure that out. Of course, to me, it makes no sense why. I can’t figure it out.

“It’s true that once you’re diagnosed
with a cognitive impairment, you
look back and see it coming.”

I had lunch once a week with a friend in a local restaurant. He was a really good friend, but he was much older. He was staying behind because we drove him to get a haircut. I was driving home a quarter of a mile. I did it for three, five, many years, every Friday, and I’m going to describe something that people probably can’t imagine, but I lost cognitive awareness. 

I’m sitting in a car, and now I feel like I’m floating down the street. It’s like I’m a spectator, and the street signs are like floating out in the sky. Sounds bizarre, and it is bizarre. Finally, I am able to figure [it] out. I go about a little over a block, and I can tell now I can turn and pull over, and I close my eyes. I take breaths, and I open my eyes, and the world’s back to normal. I just know this crazy thing happened, and I don’t tell anybody about it. 

Being Patient: Was this your first time writing a play?

Simon:  This is not our first time. There’s something unique about me and my wife, Susan. In 2000, my wife, Susan, was diagnosed with advanced breast cancer, and during that process, the doctors pulled me over and said, “Get ready.” They did not expect her to survive it. She had a post-double mastectomy lump, and everybody goes dark, all the doctors do. That was the first time. 

“I’m sitting in a car, and now I feel
like I’m floating down the street. It’s
like I’m a spectator, and the street signs
are like floating out in the sky.
Sounds bizarre, and it is bizarre.”

By the way, I call it my fourth age of life. We used to have three ages; your third age is [when] you retire and die, and now we live longer. I went through that process. I was her care partner. I was not the patient. I would call it a love partner. I had to imagine holding her, my wife, then at 34 years and 58 now, in my hands as she took her last breath. I honestly didn’t know if I could do it. 

She’s an unlikely survivor even now; I call it post-traumatic spiritual disorder. I was doing improv back then, and they encouraged me. I started doing scenes and talking about it, and I was encouraged to write a play. My first play was called The Actual Dance: Love’s Ultimate Journey Through Breast Cancer. Whenr it is the care partner and love partner, when it’s somebody you’re in an intimate relationship, or even a parent— you have two roles, and that you give care, you help them, you support them, you hold out that semi-circular metal pan for them, but your heart’s breaking at the same time. 

They’re two distinct journeys, and people don’t understand that, but now our roles have changed. Now I’m the patient, and Susan is the care partner, and so we have that experience, which I’m finding is unique, invaluable. 

I’ve learned that helping somebody who has cancer, and it’s serious, they don’t change who they are. She was always Susan. Right now, I’m Sam, still largely, but I’ve learned by performing in my play that so many of us become someone else. I write poetry now, too, and my first thought was: I wonder what the I of me then will know about the I of me now. 

Being Patient: Tell me a little bit about that growth since diagnosis, with creativity and learning new things, because that’s what’s super interesting about you, is that you’re able and capable to do these things despite a diagnosis,

Simon: I want to caution that I’m [at an] early stage. The changes for everybody are different. I was encouraged to write because I had done this other play, and I was involved in the theatrical world. 

When you’re diagnosed, the first thing you do is say “No” a lot. I was telling people in the theater world because I thought I [would] have to just go in a corner and curl up. They said, “Write about it.” They encouraged me to write about it. 

It was not the first thought I had. I don’t know whether my brain technically still works the same. I don’t think it does. To me, the biggest concern, what I see the most, is people giving up real quick. They see a world of late stage, and they think that’s where they’re going to become immediately. 

“I’ve learned by performing in my play that
so many of us become someone else. I write poetry
now, too, and my first thought was: I wonder
what the I of me then will
know about the I of me now.”

I’ve had people stand up at my shows. Very early on, I still picture this woman. She said, “My husband was diagnosed, and he came home, went into his room, and didn’t come out.” That’s not a literal, but I just gave up. You don’t survive [without] being active. I’ve learned doing this. 

I had some history. This wasn’t brand new. I had been writing poetry, not as a young man. Especially when we can’t control, I think this is the challenge. I didn’t have a choice to get Alzheimer’s, and even if I did, I blew it because now I’ve got to make the best of what I’ve got.  

I usually do this at the end, but I want to mention [someone]. Her name was Lynn. She taught me something that has made this even possible. I want to attribute it to her. Her name was Lynn Fielder. Lynn, at 30, was diagnosed with Parkinson’s, and she even had brain stimulation. 

She went on and became, for a while, the Clinical Director for Planned Parenthood in Silicon Valley. Then, in the early 40s, she had to retire. I was on the board of directors of the World Institute of Disability at California, one of the major ones in the country. 

Lynn was getting on the board. The first day she showed up, she insisted we had lunch. She told me something that has become extraordinarily valuable to me. She said, “Sam, I’m not poor Lynn with this Parkinson’s, not poor me with this ugly, terrible disease. I am Lynn with Parkinson’s. It’s part of who I am, and I’ll be the best the world has ever seen.” 

So, I’m not poor Sam with Alzheimer’s, and “Why me?” I will be the best Sam with Alzheimer’s that the world has ever seen. It is a significant mindset that’s not necessarily easy for anybody.

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Being Patient: How did you get from “Oh my gosh, I have an Alzheimer’s diagnosis” to this place? What carried you there?

Simon: It’s steps. You don’t dive off the high board and just splash. [There is] a scene in the play where it’s interesting that the neurologist who told us we had the disease, he’s more affected in some ways than we are. I have some empathy for doctors who have to give a terminal diagnosis to a patient. 

He’s sitting behind his desk. He’s not speaking clearly. He seems reserved because I think we’re at a new diagnosis, and then he mumbles, “early-stage Alzheimer’s.” He literally mumbles. You sit there for a moment in the play. I said, the universe stops. It’s an existential moment. We don’t break down and cry. We don’t go to “Why me,” we just sort of absorb it, and we go home, and we sit, and we talk. 

“I’m not poor Sam with Alzheimer’s, and
“Why me?” I will be the best Sam with
Alzheimer’s that the world has ever seen.”

My wife is incredible, or I wouldn’t have been married 15 years, four months, and three days. She was sick, and the doctor said, “Get ready.” I had come home, we came back from the doctor, and we had what I called “the conversation,” and it goes something like this. 

I say, “Well, alright, Susan, I could sell the company. We can even sell our house. Let’s use our money, travel the world, do all the things we’ve always wanted to do.” She looks at me and says, “Sam, [if we are] not living the life we want to live now, let’s change because it’s not the life we want to live, not because I might die.” That is some core wisdom: if you’re not living the life you want to live today, friends change it because of that, not because you might die. 

I hesitate because not that many people get the chance to have been on the other side of this, like this, but that has helped us and me a lot, and that might even speak for people to volunteer maybe and be in other places and see and be in positions to see that happen. But you never strike home like when it’s you or your loved one. I hope my work helps people if they hear it and can think about it. 

Being Patient:  Tell us about your play. How can people bring Dementia Man to them?

Simon: I perform where I’m brought. I do have a theatrical agent. I just came back from Cedar Springs, Iowa, [at a] huge senior living center. We had 300 people watching it. I’m going to do it at a local Presbyterian church this next week. I do it at a lot of senior living centers. 

“That is some core wisdom: if you’re not living
the life you want to live today, friends
change it because of that, not because you might die.”

Go to your community center and your churches. If you have an Alzheimer’s Association or any other organization, tell them about Dementia Man. I want to say that I don’t need to make a living or have my costs covered. My goal is for everybody who needs to see it to have an opportunity to do so.

Being Patient: As someone with Alzheimer’s performing, what goes into a performance? Do you have any accommodations?

Simon: I have a script in my hand. I’m not there reading, but I have it. We have my wife, Susan. [She] is my cognitive navigator. That’s a phrase. For this show, she sits in the first row, and she has a script. If I get lost, and I have, she can go, “Page 10, line nine.” [That] kind of thing, and I can hear it. 

We’ve accommodated it. It’s not the typical one guy floating around the stage. It is staged. I move, I act, and I have help in the audience. I’ve been told, even after a while, [they] don’t even notice the script. I believe all of us with these diseases can do so much more than we think we can. 

“I believe all of us with these diseases can do so much more than we think we can.”

It is so important that we can live meaningful lives with this disease. We can have accommodations like other disabilities, and with those, we can still do things. That blank face that you see sometimes, you never know what’s behind it. I’ve heard stories from people who said that they talked to their aunt about memory care every Wednesday for three years, and then one day, the aunt turned and said, “Thank you.” [There are] lots of stereotypes we need to overcome and help people know that there is a meaningful life to be lived with, and it’s full of surprises.

Katy Koop is a writer and theater artist based in Raleigh, NC.