No Slowing Down

Rachel Weeks and her Sister

Rachel Weeks and her Sister

Rachel (the shorter of the two) and her sister, Rebecca, have teamed up for several athletic events since the end of 2011.

Taking part in a triathlon means, at one point, having to jump into a body of water with potentially hundreds of other people and then swim frantically, so as to break from the pack. “It’s typical for there to be panic attacks in the water,” says Rachel Weeks, conjuring images of limbs flailing, elbows and knees knocking, water swallowed. “It’s scary.”

In Rachel’s case, it’s even worse.

She has Usher syndrome, a retinal disease that affects both the ears and eyes. Her visual field is less than 10 degrees, and roughly 70 percent of her hearing is gone, which means she needs hearing aids. But she can’t wear those in the water.

So, while thrashing her way through the throng during those initial moments of the swimming leg of a triathlon (the others are running and biking), Rachel depends heavily on her guide—her younger sister, Rebecca—to whom she’s connected by a tether. The experience, she says, “can be claustrophobic.”

So the big question is, Why does she do it?

First, it’s a way to raise money for the Foundation Fighting Blindness, with which Rachel, who’s 29, got involved in 2011, after coming across its Race to Cure Blindness website. The attraction was, she didn’t have to limit herself to just one event to raise funds, but could leverage any and all competitions she might enter to bring in pledges.

Which brings us to the second reason. For years, after giving birth to her daughters—Audrey, 5, and Hailey, 3—Rachel didn’t exercise or socialize much. She was working part-time from her Columbia, South Carolina, home while raising the girls with her husband, Zach, a general manager at Sam’s Club, and “sitting in a chair or just playing with the kids on the floor.”

But growing up—first in Nashville, Tennessee, then in Tampa, Florida—she’d been very active: riding horses, cheerleading, swimming. So when the opportunity to run a 5K for the Foundation popped up last December, Rachel gave it a shot. “I was immediately addicted,” she says. Since then, as a member of the two-person Team Light Up the Darkness, she’s competed in a 10K, a half-marathon and a triathlon.

And she’s just getting started. “We have a whole race calendar,” she says – another half-marathon, a marathon and two triathlons, all before year’s end. “Then we have a 2013 calendar,” she adds, laughing.

Getting to this point wasn’t easy. At age 3, Rachel was diagnosed as hearing impaired, with the cause thought to be nerve damage. So growing up, whenever she felt off-balance, she attributed it to that. But then she had problems seeing at night. An extensive eye exam at age 19 confirmed that she has retinitis pigmentosa, which, linked to the hearing problems, led to the Usher diagnosis.

Lots of research followed, which put the Foundation on Rachel’s radar, but it took her and the family, including her parents, years to grieve and then get used to the fact of living with the disease. Once everyone did, it was time “to do something,” Rachel says.

Now, everyone lends support, including Zach, who – on weekends and at the end of his 12-to-14-hour days – takes the kids so that Mom can train with Aunt Becca. No one else in Rachel’s family, going back for generations, has or has had a vision or hearing problem, she says, but a recent scare with Audrey, who didn’t do well on a hearing exam, “freaked me out.” Though it appears that Usher is not the cause, “it’s one thing for me to have to go through this,” Rachel says, “but if my children would have to?”

So she keeps on running, biking and swimming, and collecting pledges while also engaging in fundraisers of her own – selling Light Up the Darkness lanterns, for example, and planning a golf fundraiser in Tampa, where her parents still live, this fall.

There is, also, one more reason Rachel competes in such rigorous events.

“I’m trying to raise awareness about retinal diseases,” she explains. “And when people ask about the tether during races, and I say I’m legally blind, they wonder why I do it. People often don’t understand that those with impairments can be active, too. I’m showing them what we can do, not what we can’t.”