Memory, Explored By Mary Fridley

By Mary Fridley

Happy New Year and best wishes to the agebuzz community for a healthy, peaceful, and creative 2024!

As anyone who has read my column knows, I love to share articles,  blogs, or interviews that help me grow. This was definitely my response after reading “Speak, Memory,” which explores new ways of understanding dementia with Lynn Casteel Harper. It appears in the most recent issue of  The Sun Magazine.

I have gotten to know Lynn, who currently serves as the minister of older adults at The Riverside Church in New York City, through Reimagining Dementia: A Creative Coalition for Change, and I take every opportunity I can to recommend her book, On Vanishing: Mortality, Dementia, and What It Means to Disappear as one of the most thoughtful explorations at dementia and living I’ve ever read.

I am always moved by the compassion and fierce humanity of Lynn’s words and inspired by her willingness to grapple with hard questions without relying on easy answers. So without further ado, here is an excerpt from “Speak, Memory,” which begins with a question from author Derek Askey (the full piece is available here),

Askey: You’ve written about your mother giving you your childhood papers — drawings and schoolwork and even the meeting minutes for a club you’d formed with your friends. You say the you who’d made the materials was so unfamiliar that the papers felt “foreign.” How does this type of routine memory loss, which everyone experiences, relate to dementia?

Harper: Though the losses with dementia are more startling, even upsetting, they are still part of the continuum of human experience. We’re always negotiating our personalities, which are not static. When I saw those childhood papers and remembered the secret club I had formed with friends in middle school, there was a sense of rediscovering that little girl who was writing and who craved community and friendship, but who also had some guardedness about the treasures she kept. Looking back, I can say, “I honor that self, even though I’ve outgrown it, and there are still gifts there to receive.”

We experience multiple selves throughout our lives. It is actually a gift to forget some of them. If we remembered everything, it would be a burden. When people have conditions where they can’t easily forget, it can be a problem for them. There is something to be said for not having to carry around everything we’ve encountered in a given day, week, year, or phase of life. And there’s something magical about rediscovering something you did at a different time that surprises you. It may not always be a happy surprise. There may be shame associated with whatever your previous self did or didn’t do. I think it requires some compassion for yourself, some gentleness, to hold the multiple selves that you have been.

We shouldn’t be so tied to the idea that the predementia self was the most pristine or pure or true version of yourself, and the one with dementia is somehow less valid. That creates stigma and gives others permission to distance themselves: This isn’t the person I know. My sixth-grade self was still the real me, and she was connected to and involved with her world. She’s still a part of me, even if I’m not living that experience any longer.

Askey: Surveys consistently show that Alzheimer’s is the most feared disease in the U.S. What does that say about us?

Harper: I’ve read that people worry more about other conditions — cancer is always high on the list — but people fear Alzheimer’s. Over the course of working with people with dementia, encountering it in my family, and writing a book, I’ve seen how overwhelming the fear around cognitive decline can be. People have knee-jerk reactions that I don’t think they would with other diseases: “If I get a diagnosis, I’m going straight to the gun shop,” or “Just wheel me out in a lightning storm holding a golf club.” Sometimes the fear shuts down conversation. People don’t even want to talk about this. Or they make statements like “That is the worst thing that could ever happen to a person; hard stop.” I sometimes hear, “You must be a really special person to work with those people” — which I’m not. I’m a normal person who has the same fears as everyone else. I’ve experienced the fear of dependency, of not having any way to control a situation, of helplessness: What if I have to rely on other people? That fear is cultural.

So what do we do with it? Fear itself isn’t the problem. It’s just a feeling. But fear leads to stigma. People with dementia report losing friendships at a much higher rate than their peers, and they’re under greater threat of elder abuse. A lot of that has to do with unexamined fear. To be alive is to be fragile, and it’s natural to be afraid. But if we’re unwilling or unable to work with our fears — naming them, taking some of the air out of them — they grow.

After you’ve finished reading the entire piece, I hope you’ll join me in sharing this critically important message with all those who would benefit as well.

Mary Fridley is on the faculty at the East Side Institute in NYC, co-creator and leader of The Joy of Dementia (You Gotta Be Kidding!), and coordinator of Reimagining Dementia: A Creative Coalition for Justice. An accomplished teacher and workshop leader, Mary practiced social therapy for 12 years and uses the social therapeutic approach as a teacher and workshop leader. She is the author or co-author of several articles and chapters on the Joy of Dementia, including a chapter that appears in The Applied Improvisation Mindset published in August 2021. Additionally, Mary is a guest blogger for agebuzz and a playwright and theater director. She makes her living as a non-profit fundraising consultant. She can be contacted at [email protected].