Kathryn Marxen-Simonson, 30, of Portland, Oregon, has had limited vision since she was 3 ½ months old, when she developed retinopathy of prematurity as a baby born prematurely at 25 weeks gestation.
Though surgery partially fixed the retina that detached from her right eye, she doesn’t have any usable sight in that eye. Tools such as glasses, her guide dog, Nabisco, a white cane, a magnifier, and a monocular – or half a binocular – help her navigate the world.
And she helps others with limited vision learn how to use similar aides so they can perform everyday activities like reading and preparing a meal. Kathryn Marxen-Simonson, M.S.O.T., OTR/L, CLVT, is one of very few occupational therapists who specialize in low vision therapy while also having vision impairments themselves.
“This job is amazing. It’s so rewarding,” said Marxen-Simonson of the OHSU Casey Eye Institute’s Evelyn L. Jones Low Vision Rehabilitation Center. “I share a common experience with my clients. I can say, ‘Hey, I’ve been there,’ to let them know they’re not alone.”
Leveling the playing field
Growing up, Marxen-Simonson’s parents encouraged her to play like any other kid, including horse riding, biking and rollerblading. But she was still embarrassed about her vision impairment and didn’t use many adaptive aids out of concern they would highlight that she was different. And then a high school teacher of the visually impaired told her tools help level the playing field between her and others who can see clearly.
She says she “owned” her vision loss in college and explored how aids could improve her quality of life. Screen magnification enabled her to more easily read computer text and an audiobook player helped her study college textbooks. Later she started using a white cane, which enables her to walk faster and with her head up, versus staring at the ground and worrying about tripping.
Marxen-Simonson was interested in becoming an occupational therapist as early as high school. She initially thought she’d use her passion for horse riding to be an equine therapy provider, but then she realized there was a big gap in services for people with low vision. For example, when she attended grad school in Washington state, the state provided her assistive equipment, but she had to figure out how to use them on her own. That’s where therapists like her come in.
“I help individuals be as independent as possible given their vision loss,” says Marxen-Simonson. “People with vision impairment can feel like a burden, especially adults who are experiencing low vision for the first time and have been able to do so much for themselves until recently.”
Beverly Vogt, 87, of Portland, is among the 20-some clients Marxen-Simonson is working with at any given moment. Vogt has advanced macular degeneration and glaucoma, which led her to become legally blind four years ago. She only senses a sliver of light in part of her left eye.
Her partner of 31 years, Richard “Bart” Bartels, helps her take medications since Vogt can’t read labels. Both retired geologists, the duo used to drive around the state to explore rock formations together. Now they enjoy the rocks that make up their private collection at home.
Marxen-Simonson is helping Vogt learn how to use an application on her digital tablet that reads out loud text on the printed page. She has to perfectly center the tablet’s camera over a page so the tablet can automatically take a picture. The app takes a few seconds to process the text before it can start stating the words shown.
“Before I went blind, I loved to eat breakfast and read the newspaper, but I haven’t been able to do that for years,” Vogt said. “To me, being able to read a newspaper or a book would be the greatest gift I could have. It’s one way to have a little bit of independence that I don’t have now.”
Vogt was starting to get a handle on navigating the app toward the end of a two-hour appointment in mid-July. More hands-on practice will be needed to master the app and tablet, but Marxen-Simonson is impressed with Vogt’s ability to learn new technologies.
“It’s very frustrating to lose your vision,” Vogt said. “It’s hard to get used to not being able to see. It’s nice to have someone like Kathryn who is blind – though not as blind as I am – to teach me new things. Being around other blind people makes me more comfortable.”
Already, Vogt has mastered ordering audiobooks from the state library. And soon Marxen-Simonson will help her find ways to prepare meals on her own.
Marxen-Simonson hopes clients like Vogt are able to learn what she did early on: Having limited vision doesn’t put limits on your life.
“Learning to use these tools has helped me,” she said. “I want others to know that people with vision loss are able to do everything that a typically sighted person can do, though they might have to do things differently.”
To receive low-vision rehabilitation therapy at OHSU, call 503-494-3098 to schedule an initial assessment with one of the Evelyn L. Jones Low Vision Rehabilitation Center’s optometrists, John Boyer, O.D., or Alan Labrum, O.D. With their referral, patients can schedule therapy sessions with Marxen-Simonson.