While growing up, Rachel Weeks was extremely active. She swam, rode horses and joined the cheerleading squad, among other activities. Then she went off to college to become a pharmacist. But something was wrong. Her vision was failing, especially at night. A visit to the eye doctor revealed that the cause appeared to be retinitis pigmentosa. Only coupled with the hearing impairment she’d had since childhood, it was something even rarer—Usher syndrome.
“I was 19, going into my sophomore year and about an hour away from home, so I’d drive back and forth on weekends,” Rachel recalls. “But I had to stop driving. I lost my independence. I had to move back in with my parents, which was like being an adolescent again, relying on people to get me places.”
Fast forward 11 years, and the 30-year-old is now married, a mother of two and a professional counselor with a master’s degree. Oh, and a triathlete (more on that later). But getting there wasn’t easy. Like many diagnosed with retinal diseases, which progressively diminish eyesight, she’s had to adjust to stages of vision loss, each one, Rachel says, accompanied by “sadness, depression, grief.”
Early on, she didn’t have time for those things. After switching her major from pharmacy to counseling, Rachel focused, first, on school, then on getting married and starting a family. Her daughters, Audrey and Hailey, are now 7 and 5, respectively. But having children exacerbated her vision problems.
“I was told my vision would likely get worse because of the toll pregnancy takes on the body,” Rachel says. “Sure enough, I had all kinds of problems. Here, I had these two beautiful kids, but what was a 25-degree field of vision went down to 9 degrees, and stayed there.”
Although she was working as a career coach from home, and had her hands full as a mother, Rachel couldn’t escape what had been brewing for years—mostly the paralyzing thought that, one day, she’d completely lose her sight. “That’s when I turned to running,” she says. “I couldn’t drive any more, but I could still run. It was proving to myself, yes, I’m losing vision, but it doesn’t mean I stop living.”
Rachel started relatively small, with a 5K she leveraged as a fundraiser for FFB via its Race to Cure Blindness program. Then, with her sister, Rebecca, acting as her guide, she tried a 10K, followed by a half-marathon, mini-triathlons and, this past May, an Ironman competition in Texas. That’s a 2.4-mile swim, a 112-mile bike ride and a 26.2-mile run, all in one.
“Completing the Ironman was huge for me, because I was the first woman with Usher to do it,” Rachel says. “I remember thinking, I just proved to myself I can do it, and I proved it to the world.”
If it sounds like Rachel is continuing to ignore the psychological aspects of vision loss, the opposite is true. Old friends and family members are certainly supportive, “but because they still remember me as a sighted person, it’s hard for them to understand what I’m going through,” Rachel explains.
Fellow athletes, however, have only known her as visually impaired. And those with eyesight issues “complain, and even laugh, about the same challenges,” she says. “And when you do that, you realize you’re still dealing with certain issues yourself. So we help each other, and we can be creative.”
Plenty of challenges still remain—the prospect of losing more hearing and eyesight, for example. But Rachel has learned not to worry so much. “In the beginning, I was always worried about the future—will I see my kids get married? Things like that. But, today, I’m very much about right now. No one, visually impaired or not, is guaranteed tomorrow. So why sit around and worry over something we can’t control?
“Maybe I will go blind, maybe I won’t. I’m OK either way. And it’s a really freeing place to be, because before it was just anxiety, worry, depression, and it didn’t feel good. I’m so happy I don’t have that anymore.”
Pictured, above: Rachel Weeks and one of her guides, Kelly Griego, at a marathon qualifying race.