In Our Own Words
Vic, a part of The Gathering Place memory loss program, participates in the portrait project that accompanies the documentary film on memory loss. Photo by Jim L. Carey
Film project illuminates the experience of memory loss
By Connie McDougall (originally published in The Review, Spring 2018)
The video begins simply. Quietly. A person walks in, sits on a chair and looks directly into the camera. Then, one by one, they all come to share wrenching, profound and even funny stories of memory loss. They explain what they’d like the world to know about memory loss and they offer hope to others with the condition, to their friends and families.
A woman named Jean recalls her disorientation when everything changed. “Can you imagine,” she says, “trying to express yourself about your family or your activities or your feelings and the words are not there that you’ve depended on all your life? It’s like walking always on a certain path and then suddenly you’re taking a path that isn’t there.”
That’s part of the problem: Memory loss is unimaginably scary to most people, so sharing their experiences on video was an effort to counter the doom of a diagnosis and offer a more holistic approach.
“I felt it was a way to show what’s it like to be in this situation,” says Victor. “Alzheimer’s is like a landmine, a grenade. Being in this video was trying to defang the grenade. We just do the best we can.”
Living with Memory Loss: In Our Own Words is a video project created by the Phinney Neighborhood Association’s Greenwood Senior Center, featuring participants in The Gathering Place. This enrichment program for early-stage memory loss incorporates physical exercise, cognitive stimulation and social engagement.
Center Director Cecily Kaplan explains that The Gathering Place changes the narrative. “The story becomes, I’m living with memory loss, I’m not dying from it.”
Memory Loss Program Coordinator and Gathering Place facilitator Erika Merz recounts that the group discussed what they could do to raise awareness about memory loss, not only for those with the diagnosis, and their friends and families, but for everyone, especially a society that would rather avoid it.
“It was a way of reclaiming their humanity,” Erika says. “This group cares and they want to make a difference, to contribute. They wanted to do a creative project and someone said, let’s do a video.”
Recruiting volunteers for filming, editing, and the myriad tasks related to the project kicked off in 2017, with on-camera interviews of Gathering Place participants taking place last spring.
The video made its debut in November before an audience of more than 100 at the Greenwood Senior Center.]
“It was a real celebration,” says Director of the Memory Loss Program Carin Mack, MSW. “Afterward, a man stood up and spoke to the whole room saying he was newly diagnosed and had felt so alone. Now he didn’t feel as afraid,” she says.
“After the stigma of a diagnosis, people are often marginalized; they’re a label. But what they find is, life goes on. There can be meaning and understanding.”
To that end, the video puts a face —many faces—on an issue that is often shrouded in isolation and fear: “We were able to express our feelings, how it impacts everyday life, so people could understand,” Dick explains. “I never liked to be pushed around or ignored, and that’s the subtlety of this thing. It hurts. So the video is a way of articulating that.”
Mike hopes the video creates understanding. “We got a pretty good group here so I thought other people could learn something.”
Learn something like acceptance; Walt says of his memory loss: “It comes and goes. It changes all the time but I don’t let it get to me. I can’t do anything about it so why worry about it? Take one day at a time.”
Roger was in the video to promote kindness. “The world and ourselves need compassion to see it through.”
And Wayne offered this advice: “Let your life shine. You’ll be glad you did. That may seem kind of syrupy but the fact is, it’s the truth.”
The video has another showing at the center on May 16, 2018. The long-term plan is to make it available to individuals and family members dealing with memory loss as well as senior centers and other organizations.
Ultimately, it’s hoped the video helps many others, thanks to members of The Gathering Place.
“I admire these folks, their wisdom, truth-telling and humor at one of the most challenging times of their lives,” says Erika. “They have humility and love and want to have an impact. I think they did.”
The free screening of the film with a discussion and refreshments following will be shown Wednesday, May 16, 2018, 7-8:30 pm at the Greenwood Senior Center, 525 N. 85th St.
Information on The Gathering Place can be found here.
Mike hopes the video will help other people learn something about memory loss. Photo by Jim L. Carey