Follow along with the transcript below for episode: Happy Activist Sam Simon: Offering Hope for Those with Dementia
[INTRODUCTION]
[0:00:03] PF: Thank you for joining us for episode 515 of Live Happy Now. This week, we’re going to introduce you to a happy activist who offers a different way to look at devastating health diagnoses.
I’m your host, Paula Felps. Today, I’m joined by Sam Simon, who spent his career as a high-profile consumer advocate. Sam discovered the power of theater later in life. When his wife was diagnosed with breast cancer, he wrote and performed an award-winning play called The Actual Dance, which takes audiences through his experiences as a caregiver.
Then, in 2022, Sam was diagnosed with dementia and turned that into a theatrical experience as well. Today, his one-man play, Dementia Man, An Existential Journey, recounts his experience and reshapes a narrative around cognitive decline. In this episode, he shares how he is using playwriting as a form of happy activism and what he’s learned along the way. Let’s have a listen.
[INTERVIEW]
[0:01:02] PF: Sam, thank you so much for joining me on Live Happy Now.
[0:01:05] SS: I’m so happy to be here. It’s going to make me be happy today.
[0:01:10] PF: Well, oh, my gosh, I was so touched by your story because you are the essence of what we call a happy activist. We are going to get to your current story in a moment, but you’ve really done some amazing things. You’ve written a play about your wife’s breast cancer journey. But tell me a little bit about your life before that, before you became a playwright because you had an incredible career as well.
[0:01:31] SS: Come to describe it as I was a troublemaker most of my life.
[0:01:35] PF: That’s a great thing to be.
[0:01:37] SS: I hope good trouble.
[0:01:39] PF: How did that career morph into you becoming an author and a playwright? You wrote a play about your wife’s breast cancer journey. Was that the first time you had written a play?
[0:01:49] SS: Well, a couple of things happened. I had done a little community theater, and I had become connected with a fellow. I eventually sold my company. I became a senior fellow for a – I’m a nice Jewish guy for the Collegiate Church of New York when they started a social justice ministry. Anyway, the reasons I like going to New York, I was introduced to a theater company called Artistic New Directions. They taught improv, theatrical improv. I started being trained in theatrical improv. They had summer retreats. They did that for a decade, sometimes twice a summer for the amateur improvisers. I eventually got promoted to go to the advanced improvisers for a while.
The guy I want to shout out to, the late Gary Austin, he’d been the Founder of The Groundlings in LA, which is where all the Saturday Night Live. I was lucky to have some really, really good theatrical improvisers, Jeff Sweet. Another one is still around, Carol Fox Prescott. That changed me. While I was still doing social justice work with the Cleveland Church, I sort of jumped. They paid me to get to New York, so I could do my theater work, which is what I really wanted.
It was during then that Susan got. I like to say – and so Gary Austin had an exercise, an improv exercise. Each of us had to talk for 20 minutes. Just go up and talk for it. Try talking without stopping, just talking. Out of that, this was Susan had been finished with her breast cancer. All of a sudden, an improv, I said, “And then there were – Susan had this breast cancer. There’s doctor. He was always happy.” I called him Dr. Happy, which is I just made it up. That was the first start of the idea of this book.
I believe my personal experience with Susan, I call it post-traumatic spiritual disorder. We had been married for 34 years, and we’re 59 now. The doctors had gone dark, they had pulled me over, and they said, “She’s not going to survive.” I had to imagine holding her as she took her last breath. I think I could do that at first. Again, is that a hallucination or is it real? I have a lot of that in my life now.
But I imagine a liminal place is between here and wherever there is, and that there would be a moment. It would be in a ballroom, and we would be there together surrounded. There’d be a band who had played the music of our hearts, only which we would recognize, surrounded by everyone we’d ever met, ever known, ever loved, ancestors, and maybe even generations yet to come as we danced, and Susan slowly disappeared. That’s what the actual dance is.
[0:04:53] PF: Wow.
[0:04:53] SS: It’s the one where we all dance one day with someone we love. It’s an ecstatic moment. I don’t know where it came from, improv, from how I felt really. I do remember driving some days. Literally, it’s like I’m moving, but I see in front of me this ballroom. I mean, it’s scary in retrospect, but I say it because it happened. I can remember now just sitting there, and they were driving me an alarm that I’m seeing this and not the road. Who knows? These are existential experiences, existential theaters when I’ve called what I’m doing to come learn its life and death, what life means. Then I’ve been doing the play. I’ll give you your transition.
[0:04:53] PF: Tell me what year did you release the play? What year did you start performing?
[0:05:40] SS: I started performing in 2013.
[0:05:42] PF: 2013, okay.
[0:05:43] SS: 2018, I got five years later diagnosed with mild cognitive impairment, in 2022 with Alzheimer’s. But interestingly, I was beginning to have some weird symptoms. I say weird, but I’ll talk about during the pandemic, I was able to perform the actual dance remotely. I lived for most of the [inaudible 0:06:05] clubs in the country. I would be in my basement of our house, in the studio, nice background, big bookcases. Susan would just sit off to the side, and she started to have to be on book for me. She started to have to cue me.
Why was I having trouble remembering lines on the play I’ve done hundreds of times? It had never been a problem. That was one of the symptoms. There was other symptoms. I was getting lost driving. I would find my way back, and I didn’t understand what was happening at first. I was still performing the other play.
[0:06:45] PF: Once you were diagnosed, what made you write a play about it?
[0:06:49] SS: Well, I had the history of writing in plays, and I was involved in the theater world. There is a – it’s like every other industry. They have a gigantic conference once a year with all the theaters in the country. Who knew, right? It’s called APAP, the Association of Performing Arts Professionals. Every January in New York, all of the presenting theaters get together, and it’s a trade association. Anybody who has something they want to get booked, a play or something that they wanted, they show up. We’re the ones that sell to the industry. Buy me. Buy my show.
With the actual dance, I’d been making some connections, and I started going to APAP, the Association of Performing Arts. I got my mild cognitive impairment diagnosis. I started telling some of my artistic friends that I had this impairment. I didn’t know how long I was going to be able to do it. Everyone there said, “Write it and write it on stage. Go on stage.” It wasn’t obvious to me. I didn’t understand how that would be possible. It was sort of based on that.
Then there’s a moment where you want to crawl up and just never come out. But once I had the Alzheimer’s and was beginning some treatments, so I felt confident enough to do it, I had something called a dramaturg. This is an inside theater language if you haven’t heard of what a dramaturg is. A good friend, Gabrielle Maisels, I give her a shout out. I let her know, and I said, “I want to write something about it. Will you help?” She said yes. She had done my dramaturg for the actual dance.
Working with her, she didn’t write, but you write a draft, and you come back, and you talk about it. The dramaturg says, “This doesn’t make sense, and what about that?” Then we started reading, and it took probably close to a year maybe. I don’t know how long. I still make some changes. I love the work. I can improvise with it now. I didn’t write away. I love how it impacts audiences.
[0:08:58] PF: If I go to your play, what can I expect to have happen?
[0:09:02] SS: This is of a play. It was triggered in part. There’s one other thing. I was exercising one morning, listening to my podcast. I heard an interview of a woman who I will not name, who wrote a book, which she described the journey with her husband, Brian, I won’t give her first name, who had been diagnosed with early stage Alzheimer’s, my diagnosis, but how hard it was for them to be able to go to Switzerland, so he could kill himself. Here is a guy, been diagnosed, and I’m listening to somebody. He quotes her husband in the book. Brian said, “I don’t want to die.” He doesn’t want to die. “But I don’t want to continue to be coming a lesser and lesser person.” Therefore, he does die.
It outraged me. Why? Because for a nanosecond, for an instant, he said, “Maybe I should think about doing that.” That really pissed me off that I was triggered to think about it because I think people should never do that, that there is a meaningful life to live with this disease. Hearing that was another piece of inspiration to do this play, and so the play is this. It starts with the imagined. Everything in the play is real, except for one scene, and that scene is a trip, an imagined trip somewhere. That’s how I’m introduced. The curtain opens, and the stage is a small table, a pink cup, and two small chairs. Then I have some theatrical stools off to the side, and that’s a hotel room in Switzerland.
The play is about the life of this disease where [inaudible 0:10:55] start. It imagines us going there, getting ready to take that drink. It starts with us there, us being Susan and I. People wouldn’t say I’m holding my hand up at the cup as if I’m about to drink it. She changes her mind. She said, “Let’s not do it. I love you. Let’s just go home. See how many meaningful good years are left on you.”
The rest of the play is about the rest of my journey of getting diagnosed, what it’s like. It’s an advocacy piece. It talks about how badly broken the neurology world is. It advocates for cognitive navigators. Susan is my cognitive navigator for the play. I have to have the script in my hand. She sits on the front row with the script in case I need help, and occasionally I do. It goes through these trips of getting lost and being triggered. My intern is saying, “Oh, Sam. You’re just an over educated man overreacting to normal aging.” Me finally convincing him that I was having these weird things in my head, and he gets me to a neurologist. How badly broken the neurology world is and how urgent we need cognitive navigators as available as curb cuts.
Because first of all, what I learned in my own journey is that when I got diagnosed, the doctor said it could be 5, 10, maybe even 15 years before you get a lot worse. There are a bunch of us out there with this disease, trying to make our way through and living a meaningful life.
[BREAK]
[0:12:38] PF: We’ll be right back with more of Live Happy Now.
[INTERVIEW RESUMED]
[0:12:48] PF: Now, let’s hear more from Sam Simon. You’ve performed this play more than 50 times.
[0:12:55] SS: So far, yes.
[0:12:56] PF: How does it affect your view of your condition to be up there performing it? Has it changed over time, your relationship with your words? How has that evolved?
[0:13:07] SS: It’s helped me. First of all, I believe it slowed the progression. It gives me meaning. All the literature says being active and involved, so one of that, too. I’ve seen the shows evolve because I see my own journey differently and react to what are more important and how the audience. I say I learned. I said this too about my other play, and it’s hard to explain to people. I understand my show and my own journey differently because of my experience on stage. I’ll have – I’m anticipating aha moment. It’s like, “Oh, right. That’s it.”
I hear so much from the audience, too, about their own journeys and that I can learn from them and what they say and how they say it. It’s so meaningful to me and others in the audience. I’m humbled by the audience’s reactions. An example, I could not imagine that one of the first questions I get, first comments, is somebody stands up, almost always in tears, is that mother, father, grandparent. He said, “I was a care partner for my mother for five years, whatever, 10. I always wondered what actually might have been going on in her head. I think I now have a sense of it. Thank you.”
[0:14:38] PF: This has become a mission, your latest mission in life. How does that mindset help keep you healthy and keep you involved and engaged?
[0:14:49] SS: I have to work on it every day. It gives people, I think, hope and meaning. I go back to the things that are in it, the [inaudible0:14:59]. He says, “I believe encourage people to think differently, and I hope just another person or some people might not themselves will change your mind about wanting to end their life with this.” There is the broader negative view about dementia and cognitive impairment and almost always this end-stage thing. The only picture of what an end-stage looks like, that’s what dementia means, and it’s been true.
[0:15:32] PF: What do you hope that people take away from your play, from your message, from this body of work that you’re creating around living with Alzheimer’s, living with a terminal condition?
[0:15:44] SS: It is possible to live a meaningful life and that they have a gift. They have a gift, and it means – and I believe this. That gift only comes if they get in treatment, if they get diagnosed, if they enter the medical world because there may be something about them, one little thing that helps move the step to cure a nanosecond sooner. But also, hopefully, they too will live a bit longer.
I am a staunch opponent to this assisted suicide. I think you can find meaning to every – I will never be a lesser person. I might be somebody else. I’m a little curious. It’s a line in the play. It’s also a poem. I wrote a poem about it. I wonder what Sam would be then when I change. We’ll know about the Sam I’m me now. It is a little bit of curiosity.
[0:16:45] PF: Sam, thank you for joining me. Thank you for showing us how to live happy and for being so willing to be vulnerable with your audiences and with others who need to hear it from you, so thank you. Thank you for sitting down with me today.
[0:16:59] SS: Thank you. We’ll keep it up.
[END OF INTERVIEW]
[0:17:04] PF: That was bestselling author and playwright, Sam Simon, talking about his one-man show, Dementia Man, An Existential Journey. If you’d like to learn more about Sam, discover his weekly Dementia Man podcast, explore his other work, or follow him on social media, just visit us at livehappy.com and click on this podcast episode. That is all we have time for today. We’ll meet you back here again next week for an all-new episode. Until then, this is Paula Felps, reminding you to make every day a happy one.
[END]
In this episode, you’ll learn:
- How Sam discovered the power of theater.
- How being on stage and talking about his journey has helped him see his condition differently.
- What others can learn about living with a terminal condition.
Sign up for the weekly Dementia Man podcast.
Visit Sam’s website.
Subscribe to Sam’s blog.
Follow along with the transcript.
Follow Sam on Social Media:
- Facebook: @dementiaman
- Instagram: @thedementiaman
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