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The Challenge

A Series on How People Affected by Retinal Diseases Adjust to Continual Vision Loss

Rachel Weeks — On the Run

Rachel Weeks and her guide, Kelly Griego, at a marathon qualifying raceWhile 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. 

9 Responses to 'Rachel Weeks — On the Run'

  1. Carol Turner says:

    What wonderful encouragement you have been to me! My daughter is 30 and has RP! She is still working and driving ! Bless you! Your kids are so lucky to have such and strong and determined Mom! Keep up the enthusiasm!

    • Mark McCowan says:

      Rachel – You inspire me! I have RP and am partially deaf! I am 41 years old and recently retired from teaching. I too have picked up running – just finished my third half marathon and am looking to do my first my first marathon in fall of 2014. It is people like you that motivate others to keep moving!!!

    • Deidra Cravens says:

      Mom to Mom, your daughter sounds amazing. I love reading stories about adults who are “seeing around” their conditions.

  2. Rachel says:

    What an inspiration you are. My son also has RP and knowing that you can go forwards gives me hope in knowing that he also can feel this way with all the support he’s getting with his family. God bless you.

  3. Deidra Cravens says:

    I love how you have become the first usher Iron Girl. It is such a great way to bring awareness to the degenerative eye diseases, affecting so many people! My son has Stargardt’s and is actively pursuing sports, and he is an accomplished triathlete at the tender age of 10. Your story offers our family so much hope. Congratulations on your accomplishments!

  4. Rosalie Irwin says:

    Dear Rachel
    It was wonderful to read your article and to hear about eye disease. My son has just been diagnosed with Stargardts and we are trying to come to grips with it. He is 23 and is trying to be positive and we all hope that the new research is going to help all the people with this terrible eye condition.Thanks for your positive attitude.God bless you.Regards Rosalie Irwin

  5. Lizette says:

    Rachel! You are an amazing woman…your positive outlook is an inspiration to all. May God continue to bless you and your family every day.

    My husband has RP, but can still drive. However, he is in and out of depression and stuggling with what tomorrow may bring. I don’t know how to help him and it is killing me and our relationship…any guidance?

  6. Judy Byrd says:

    What a great description of how sports Impacted your life. I founded beep kickball just two years ago for that very reason- to help children as young as 5 get active and stay active! I’ll be in Denver this summer with FFB and hope to meet you!

  7. Shannon says:

    I too have am a working mom with Usher’s. I stopped running because I fell and nearly broke my wrist. You have inspired me to find a guide. Thank you.

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