Turning painful memories into art

Actress Kathleen Swenson drew on her experiences growing up with a parent with schizophrenia to create a short film dedicated to her mother and all people who live with mental illness

Kathleen Swenson can’t ever remember having a relationship with her mother like the kind she read about in story books. When her parents divorced not long after she entered elementary school and she went to live with her father, she was too young to understand exactly what had brought it about, but even then she had an innate sense that her mother “had a lot a problems.”

“Mostly I just remember that I got bounced around a lot,” says Swenson, now an actress and special education teacher in Albuquerque, New Mexico and the mother of two teenage daughters. “I always had a sense that things weren’t quite right, but it was also just my reality. She was my mom and that’s just the way things were.”

Growing up in Farmington, New Mexico with her father, stepmother and stepsister, she regularly made the three hour trip to Albuquerque for visitations with her mother and spent longer periods with her during summer vacations and holidays. Often, she would arrive to a dirty and disheveled apartment, with no food in the refrigerator and her mother, who was heavily medicated, asleep and almost unarousable.

“When I would go visit her, it was much like I was thrown into the adult role,” Swenson recalls. “It was like, ‘OK Mom, we really need to clean the house,’ or ‘The dishes need to be done,’ or “we really need to go get some food. And I have a lot of memories of just trying to get her out of bed, you know? It just felt really heavy, that heaviness of ‘OK, we’re in this apartment and the place is a mess and I don’t think everybody else’s mom sleeps so much.”

Sometimes, when her mother was visited by a ‘friend,” she was told to “Go play outside” and locked out, alone, for hours. Other times -- when her mother was struggling and had to be institutionalized -- she would have to visit the “scary place,” a mental health center where her mother begged to be released and the people around her all seemed “much worse than she was.”

“It was hard on her and it was hard on me,” Swenson says. “I remember times when I would think, ‘Why do I want to see my Mom? I have to see things I don’t want to see and be in a situation I don’t want to be in. But then there was always that underlying current…She’s my Mom and I love her, no matter what.”

But there are good memories too, Swenson insists. Because her mother didn’t have a car and couldn’t drive, anything they did together – going grocery shopping, to the mall, to a movie – involved bus rides and became an all-day affair. Sometimes they’d visit the music practice rooms at the University of New Mexico, where her mother would play the piano in a soundproof booth while she watched through the observation window.  Even now, Swenson recalls how her mother’s hands, which typically trembled uncontrollably as a result of the many medications she was on, would become still the moment she laid her hands on the ivory keys.

As she grew older, Swenson learned mental illness could be hereditary and worried that it might also lie in her own future. But although she has experienced some bouts of depression in her adult years, the fear that she would inherit her mother’s illness has never materialized. In fact, she believes her experiences with caring for and about her mother made her more independent, more resilient and a better parent to her two daughters.

“It made me realize not everybody has a cozy upbringing,” she says. “I tried my best to use my struggles to say, I have to push past this. It made me want to be a really good mom for my own kids and to do everything I could to be there for them, maybe in some of the ways I didn’t have growing up. I think it made me stronger in the end.”

Swenson credits the “stable” home life she had with her father and stepmother, for her sense of confidence and security, but is also quick to point out how much she benefited from the constant support and assistance of her mother’s sister, who was “a rock” both for her Swenson’s mother and her niece. This was especially true during the years when Swenson was in the Army after high school and then managing her own family, with two young children. Later, when her mother was living in a mental health facility in a dangerous part of town from which she frequently strayed, it was her aunt who joined Swenson in the agonizing searching of nearby streets and alleys to find her, both of them unsure whether she was dead or alive.

 “She’s the one who helped my mom almost all her life,” Swenson says. “Without her, I’m pretty positive Mom would have been on the streets. There were times it was brutal. I don’t think I could have done it without her.”

Toward the latter part of her mother’s life, it was Swenson’s aunt who found her mother a placement in a locked-down nursing facility that gave them both peace of mind that she was at least safe and under constant observation. By then, her mother was no longer capable of functioning or living on her own and heavily medicated. (She was on nine medications at her death.) Swenson often wonders what quality of life her mother might have had if she had not been under the influence of so many powerful medications.

Even after her mother entered the nursing facility, Swenson, her husband and their two daughters continued to visit regularly. When they did, her mother would put both hands up to her cheeks and squeal “Oooooo!” when they arrived; “every square inch” of her nursing home room walls were covered with photographs of her daughter and grandchildren, Swenson says.

At first the girls were uneasy – “Should I be scared of Grandma?” her older daughter, Emma, asked one day. “Yeah, sometimes Gramma’s strange,” echoed her younger daughter, Elizabeth. Swenson assured them that it was just “a little bit hard for Gramma to answer your questions the way you’re used to, but you don’t have to be scared, you just have to be a little more patient with her.”

“And they were,” she adds. “They learned what to expect from her and how she would talk to them. They liked seeing her and they’d hug her and sit on the bed with her.  The neat thing about my Mom was, she never lost her loving heart. She loved me and my girls so much. We were her life.”

After her mother died, in 2009, Swenson became involved in the New Mexico film industry, initially as an extra, and eventually pursuing roles as an actress and producer. After finishing her first feature film – and about the same time another family member began experiencing mental illness symptoms -- she started thinking about writing a script for a short film. It would be dedicated, she decided, to her mother and “all people who struggle with mental illness, because it’s been such a part of my life, and still is in many ways.”

The result, just completed, is a 10-minute movie called “Art of the Mind.” It is not strictly biographical, but the central character (played by Swenson) is named Mary (Swenson’s mother’s name was Mary Ellen)  and is a woman who finds solace and a sense of self and security in her art. (In this case, creating paintings of giant sunflowers.) Mary is caught in a “twilight zone,” as Swenson puts it, between the reality that exists in her own mind and the sometimes horrifying external reality that exists around her.

“My point was for the audience to have empathy for people who are institutionalized or hospitalized,” she says. “As an actress, I felt I really had to bring this to life because I wanted people to feel compassion for the people who struggle with this.”

The film became a “passion project” that Swenson’s friends and film colleagues eagerly volunteered to support. One helped her write the script (something she’d never done before); another provided a location (an old 1950s hotel that resembled a hospital); still others donated artwork, costuming and funding. A film composer she’d worked with on a previous film, Mariano Saulino, agreed to create an original score.

When the score was completed and Swenson sat down to watch it with Saulino for the first time, he told her he had a surprise for her. Swenson’s husband, Steve, had located some sheet music from a song called “The Ocean” that her mother had composed when she was alive and Saulino had taken parts of the composition and woven it into the film score. He even created a “The Making of ‘Art of the Mind’” video to explain how he incorporated Mary Ellen’s music with his own.

“So my mom’s work was actually part of the film through Mariano,” Swenson says. “That touched me so much. The whole process was just very emotional.”

Though the film has not yet been generally released – Swenson plans to make the rounds of film festivals with it first – it will eventually be made available online. Scrolling on a black background at the end of the film are these words:  “In loving memory of my mother, Mary Ellen Reese, and for all those who suffer from mental illness.”

 “There are a lot of things with my Mom I wish could have been different,” Swenson says. “But it was what it was. The most powerful thing we can do for people with a mental illness is to love them and support them and let them know they are not alone.

“I would just say to always communicate, and if they can’t communicate back on a given day, don’t give up. The next day they might be able to. So just let them know, ‘I’m here. I love you. We can get through this together.’”

Though the person the film was made for will never see it, Swenson believes she knows how her mother would react if she could.

“I can just see the smile on her face,” she says. “She’d be giggling. She knew she was loved.”

If you or someone you know is interested in sharing a personal mental health journey on FMI, please reply to this post or write us directly at faceingmentalillness@gmail.com. The process involves a Zoom interview, the audio of which will be edited for a podcast, and a photograph. Thank you for helping to spread the word by sharing this post.

FACEing Mental Illness podcasts can also be found on Spotify, Stitcher and Apple Podcasts. We are grateful to anyone who chooses to submit a review or share a podcast.