Photo: Matt McClain/Washington Post.
What does dementia look like? To share the reality with others, Samuel A. Simon chronicled his own dementia in a one-man play.
Today I offer a long article from the Washington Post about a man sharing his experience of dementia in a play. The Post writes in the present tense, but I suspect that since the piece was published months ago, the actor may no longer be able to continue his feat.
It’s a sad story and a brave one, reminding us that we have the freedom to deal with life’s challenges however we want.
The Post‘s Michael Brice-Saddler begins, “He props his smartphone against a pile of books and adjusts the settings so the screen won’t go dark. He sets a timer. Then he waits.
“Eyes closed, Samuel A. Simon traces his breath from his ankles up through his chest, checking in with each part of his 80-year-old body before he begins. A purple binder holding a play script rests in his hands; the opening lines come from memory. …
“Simon was diagnosed with early-stage Alzheimer’s disease in 2022. As his memory has grown less reliable, he has turned his experience with the disease into a one-man play, Dementia Man, An Existential Journey, performing it publicly as a way to hold on to a sense of self. …
“Outside of the play, much of Simon’s day is organized around staying present at medical appointments, keeping up with a calendar that includes volunteering at his synagogue and advocacy work in Northern Virginia, and the small conversations he and his wife, Susan, return to again and again as they try to stay ahead of what’s changing.
“After faltering during his latest run-through, Simon tries to recall the name of a doctor he mentions in his script. He pictures circling the name in his mind, then tries again.
“ ‘It’s the first doctor I see,’ he tells Susan. Another pause. ‘God, what do I call him — doctor who?’ After several more beats, the name arrives: Dr. Howard.
“Simon sometimes gestures toward his wife for help during rehearsals, and she quietly feeds him the next line. During the actual performances, while sitting in the front row, she knows not to rush him through these moments. …
“The exchange reflects an undercurrent in the play that pulls audience members without Alzheimer’s into what the disease can feel like from the inside.
“ ‘Vanishing is my worst fear,’ Simon will say onstage.
“Remembering one’s lines before a live audience is daunting — even without a disease that steadily erodes memory. Simon has chosen to take on that challenge anyway. For nearly three years, he has performed Dementia Man in small theaters and public libraries across the country. He has also turned the work into a book, using it as a way to hold on to a sense of who he is and the life he remembers living.
“That life includes his years as a young lawyer working alongside renowned consumer advocate Ralph Nader on property tax reform. It also includes a nearly 60-year-long marriage that sprang from a chance encounter in El Paso when they were dating other people. ….
“Simon has long described himself as a troublemaker — someone wired to push at systems that are dysfunctional and don’t sit right with him. In 2016, the system that stopped functioning properly was his own.
“That year, Simon found himself driving on the wrong side of the road about 10 miles from his home in McLean, Virginia, alerted by a chorus of honking horns. … Several months later, it happened again — this time on the familiar drive home from the local diner where he and a good friend ate lunch every Friday. Simon told no one.
“What finally overwhelmed him were episodes he struggled to describe at the time: moments when his body and mind seemed to separate, when he felt himself slip into what he would later call the ‘Nothingness Place’ — a sensation he has likened to floating, briefly, outside himself. …
“Eventually, Simon spoke up. … In 2018, Simon was diagnosed with mild cognitive impairment, a condition that can precede dementia but does not always progress the same way. The label helped explain some things, including the slips and disorientation, but it offered little clarity about what came next.
“This uncertainty lingered until 2022, when Simon was told his cognitive impairment was caused by early-stage Alzheimer’s. … Encouraged by friends, Simon began to consider bringing the experience to the stage. …
“After performances, Simon says, he is often approached by people who have lost a parent or spouse to dementia — thanking him for offering a lens into what their loved ones might have been going through.
“Susan remembers feeling overwhelmed at first, watching her husband perform Dementia Man. There were nights she sat in the audience with tears in her eyes, watching intimate moments from their shared life take shape onstage.
“Now, she says, the feeling is different. ‘Thank God he has a purpose.’ ”
More at the Post, here.
