Standing on Shifting Sands

Tamar Bresge has spent much of her life navigating the in-between — between vision and vision loss, art and writing, fear and acceptance, privacy and advocacy. As an artist, writer, and educator living with retinitis pigmentosa (RP) due to Usher syndrome, she has built a life and career rooted not in distancing herself from her diagnosis, but in understanding it as an inseparable part of who she is.

Now 30 and living in Toronto after several years in the U.S. pursuing graduate studies and a career teaching at the university-level, Tamar speaks about her vision loss with a perspective that feels both deeply personal and refreshingly unconventional.  

“I really like myself,” says Tamar. “And I really like this thing about me that narratively in our society, we don’t think is something that should be celebrated.”

Tamar first noticed something was different about her vision as a child. Around age 7, she remembers struggling to walk down a dark path on a family vacation while everyone else could see clearly. At school, gym class became a source of anxiety as balls seemed to come out of nowhere, leaving Tamar aware that something wasn’t right but often laughing it off as clumsiness.

An optometrist she still describes as a “superhero” listened carefully to her concerns over the years, continuing to monitor her symptoms until she was eventually referred for further testing as a teenager. But the path to diagnosis was difficult. At 15, following extensive evaluations and genetic testing at a children’s hospital in Toronto, Tamar learned she was losing her vision due to RP.

The experience itself was traumatic. Much of it, she recalls, feels blurred by time and emotion. What she remembers most vividly was being told to prepare for a life without vision.

“It felt like this huge shadow hanging over me,” says Tamar. “I didn’t know what my future would look like. Ironically, it feels like that was the most blind time in my life because I had no understanding of what was happening and what would happen. I only had fear.”

For years afterward, Tamar kept her diagnosis almost entirely to herself. She rarely spoke about it, even in therapy. She worried people would see her differently or treat her with pity.

“It felt like this big secret,” says Tamar. “Something contagious, almost, like there was something wrong with me. I needed to be in control of who is allowed to know about it.”

Yet over time, something shifted. As Tamar moved through high school and eventually into art school, she began to find language, both literal and artistic, for experiences she once struggled to name.

Initially attending undergrad for photography, she unexpectedly fell in love with sculpture, despite the physical challenges it presented as someone with low vision.

“I was terrified of sculpture,” says Tamar. “Dimly lit rooms, power tools, objects everywhere, it felt like the worst possible fit for someone with RP.”

But it became one of the most transformative experiences of her education. Through art, Tamar could explore impermanence, time, memory, and the body — themes deeply informed by vision loss, even when not explicitly stated. Looking back, she sees much of her creative practice as a form of art therapy, a way to process the anticipatory grief of living with a progressive disease without having to say everything out loud.

“I live in a body that really stresses to me how impermanent the body is,” says Tamar. “Living in a human body is standing on shifting sands all the time for everyone. I think RP just made that present to me at a younger age.”

That understanding shaped not only her artwork, but the way she approaches life itself. Tamar describes herself as deeply curious, drawn to uncertainty, contradiction, and evolution rather than fixed answers.

“I don’t want to believe that anything is only one thing or will always be one thing,” she says. “It gives me freedom to evolve.”

At the same time, writing became increasingly central to her work. Tamar completed a minor in creative writing before eventually pursuing two master’s degrees: an MFA in Studio Art at the School of the Museum of Fine Arts at Tufts University and later an MFA in Creative Writing at California Institute of the Arts. Her interdisciplinary practice sits at the intersection of visual art, language, and storytelling.

“Language is really my primary medium,” explains Tamar. “Whether it comes out as a poem, sculpture, photo, or some hybrid thing, I’m always trying to understand what it means to be a person in a body.”

Over time, that deepening relationship to embodiment, and to disability, transformed the way Tamar understood her diagnosis.

“I had come to the best relationship I’ve ever had with my disability,” says Tamar. “It doesn’t feel like disability. It feels like something integral to me.”

Where she once hid her diagnosis, Tamar now speaks openly about RP and Usher syndrome. Rather than seeing it solely as a loss, she describes it as something that shaped her creativity, curiosity, and identity.

“It’s such an important part of my life that taking it away would be like taking away a limb,” says Tamar. “I literally can’t imagine a life without it.”

That evolving relationship with RP was also shaped by the people around her. From weekly dinners with her close-knit extended family growing up to the unwavering support of her parents, sisters, and closest friends throughout her diagnosis, education, and career, she says she always had people who grounded her through periods of uncertainty and change.

Now Tamar’s openness extends into her work as an educator, a role she considers just as important as being an artist or writer. After completing her graduate work at Tufts, she taught a course she designed, “Thinking Through Art and Writing,” exploring the relationship between visual and written language through a critical theory lens.

Today, teaching remains central to her practice. On the first day of every class, Tamar tells students she is low vision and low hearing, explaining what that may look like in the classroom and inviting students to communicate openly about accessibility needs of their own.

“I think it models a relaxed conversation around disability and accessibility,” says Tamar. “I never had that as a student.”

Her vulnerability has created a space where students feel comfortable sharing their own experiences, challenges, and identities. Tamar believes those moments of connection matter deeply, especially for young people who may be struggling to understand themselves.

Last year, after speaking on a panel of disabled writers, a parent approached her to say that hearing her perspective changed how they wanted to speak to their child about disability. The moment stayed with her.

“I wish I had someone like me when I was younger,” says Tamar. “Someone who could have shown me that this kind of life was possible.”

That desire to create visibility and connection is part of what inspired her to begin speaking publicly about her experience, including delivering a TED Talk while at Tufts. Though initially terrified, the experience became a turning point.

“It made me realize not only that I could talk about RP publicly, but that I should,” says Tamar.

Tamar knows her perspective may not resonate with everyone, and she’s quick to acknowledge that everyone experiences vision loss differently. But for her, embracing RP and Usher syndrome as part of herself has been liberating.

“RP is not all of me, but it’s a really important part of who I am,” says Tamar. “You just need to allow things to be messy and sticky in between the moments of stability. But that’s everything in life, right?”