Throughout her 29 years, Michelle Ward Caton has embraced life with unwavering curiosity and gusto. Determined to test her abilities and not be limited by vision loss from Leber congenital amaurosis (LCA), she is, among other things, a competitive adaptive rock climber and teacher of the visually impaired (TVI).
Growing up in North Haven, Connecticut, Michelle’s route to an LCA diagnosis took time. Initially, her parents noticed that she wasn’t focusing on faces. “Once I was walking, I bumped into a lot of things! But when this was discussed with my pediatrician, he said it was Michelle being Michelle,” she said. “When I was three, we moved into a new house, and while running around, I hit my head on the kitchen island overhang. My concerned parents took me to a pediatric ophthalmologist, where my poor eyesight was finally confirmed.”
Several years later, the eye doctor detected white blood cells in her eyes and sent her to a Boston eye specialist. By the time they got to Boston, the white cells were gone. However, it wasn’t until she did genetic testing during high school that Michelle was diagnosed with LCA8 from a mutation in the CRB1 gene.
The Journey
Early intervention services started at age three, and by age five, Michelle had a TVI. Refusing to be sidelined, she did everything that her older sister did at the same time. “If she learned to bike ride or swim, I did too!” Michelle said. We were only a year apart, and it was almost like being twins. But determined to keep up, I did many daring things for a blind person.”
Her resolve to play softball in elementary school was dashed, she said, “When my dad took me outside and tossed a few softballs at me until I realized I couldn’t play. When you’re a kid, you think you can do anything. Sometimes, you have to realize you can’t.”
Michelle’s parents exposed her to various activities, including the piano, flute, and bass guitar. Later, she participated in gymnastics and was a ballroom dancer throughout high school. “I did Brazilian jiu jitsu and then Muay Thai, a form of kickboxing, which my dad practiced with me, allowing me to get the rhythm of the sport and have incredible workouts,” she said.
In college, Michelle tackled the gym and weightlifting, and when she was at UMass Boston working on her TVI degree, she met a friend who did rock climbing. “I began climbing with an adaptive climbing group that participated in competitions,” she said. “I went to nationals and placed second, got on the United States team, and went to the international competition in France,” she said.
Rock Climbing Lessons
Michelle and her husband, Jason, continue to climb and discuss competing again. “It’s important to go out of your comfort zone. I still have some vision, and being outside and up high with a view is incredible,” she said. “When I’m climbing in the gym and hit the spot where I’ve fallen many times and finally figure out the right move and body positioning, it’s a small victory. It’s great getting to the top of the wall, whether I can see it or not. The top of the wall isn’t necessarily the prize. It’s the fact that you did it that builds confidence.”
Michelle at the 2019 national adaptive climbing competition
Children with visual impairments often find body awareness and balance difficult, but these can also be tough for adults. Sometimes, when Jason tells Michelle how to move on the climbing wall, getting her correct body part to the right location is challenging. “Jason might say to move my right foot three feet, and I move my left foot one foot,” she said.
Helping children with body awareness is something Michelle focused on teaching in her preschool classes during TVI training. “I’d set up obstacle courses for the children to climb over, under, or step through or over,” she said. “I think climbing and jiu-jitsu are some of the best sports for kids with vision impairments because they help build body awareness.”
Vision Changes
When Michelle was about 26, her vision dramatically worsened. “I abruptly lost acuity, and my nystagmus got much worse. There was no time to adjust,” she said. “I’ve always had some nystagmus but could focus through it; now my vision always vibrates.”
As a TVI, Michelle teaches braille, but she also uses it to access all of the appliances in her home. She also does most of her visual work in the morning because the nystagmus exhausts her by evening. “You have to adapt your scenario to your specific needs. It feels like I’m constantly adjusting. I keep puzzling things together to see what works,” she said. “This is the reality for everyone with LCA; each situation is different, and you must finesse things until something works.”
The Right People
Dating during college helped Michelle discern that “it’s the people that don’t care about my vision that make the best friends. I’d meet someone, and when they found out about my vision impairment, they would shift from ‘You’re cute!’ to ‘You’re a science project.’ They’d ask me how many fingers they held up and what I could see. I got all of the stereotypical questions.”
Michelle loves that her husband doesn’t care that she is blind. “Jason does things for me that I don’t even notice. I’ll be looking for something, and he will grab it, hand it to me, and walk away without commenting. Or he will get out of the car and offer me his arm. We never talked about my limitations—he just got it!”
She said finding supportive people who don’t coddle is essential. “Jason encourages me to learn new things that a friend might say are dangerous. Instead, he teaches me how to do it. He doesn’t make assumptions about what’s possible for me.”
A sense of humor is vital for navigating a degenerative condition; Michelle explained, “I trip and fall and knock things over all the time! My visual decline in the last couple of years has been very tough, which makes it essential to find someone who laughs with you. Being morose doesn’t work!”
Family Interactions
Reflecting on growing up with LCA, she said, “My parents always treated me like my sister. Being blind was a characteristic that only meant I did things differently. My sister didn’t acknowledge my being blind for a long time. I don’t think she fully realized what it meant. Instead, she would stare at me and say, ‘Just do it,’ which is what a big sister does.”
“My parents never wallowed in my diagnosis, and we had many real-life conversations about my vision loss. But my dad struggled because he knew my vision would get worse, and I would face lifelong challenges.” Michelle said. “In high school, we met Robin Clark, a teacher passionate about ensuring kids had the independent living skills to live successfully. We implemented creative strategies, worked on things at home, and discussed what would help.”
TVI Responsibilities
As a TVI, Michelle travels between schools in New Hampshire, helping elementary through high school-aged students based on their individualized education plans (IEPs). “I love working with the teams that work daily with the kids to support their vision in class,” she said. “Life with LCA is like rock climbing. Starting out, you have no idea what you are doing, but you feel your way along, and eventually, you’re competing!”
