Alice Bartlett – Back on That Horse

“I don’t have any trouble riding Battle,” says the 66-year-old, who’s been an equestrian since childhood. “There are miles of trails behind my house. If I pay attention, I always know where I am. And he knows the way home.”

Riding is one of the few pleasures Alice, of Culpeper, Virginia, can still enjoy on her own. Like many affected by a retinal disease, she’s been gradually losing her vision—and, thus, her independence—for many years. It’s a way of life which, if not balanced with hope and support, can lead to paralyzing depression. Knowing this all to well, Alice has done what’s necessary to strike that balance.

“I’ve been on anti-depressants for 20 years, which may have a lot to do with my not being constantly depressed,” she says. “Otherwise, I just keep on going”

Alice’s is a family story. She’s one of 12 generations—going back to the Fitzhughs, in 17^thcentury England—affected by vision loss. While the cause wasn’t known until recently, the symptoms have been the same—nightblindness, poor peripheral vision, gradual loss of sight beginning later in life.

In fact, if it weren’t for an ophthalmologist not being able to correct Alice’s vision with lenses when she was 32, she might not have been diagnosed with retinitis pigmentosa until much later. The culprit, determined by genetic testing, is a defect in the rhodopsin gene, named for a protein needed for vision.

Just after her diagnosis was when Alice’s experiences with vision loss began. “I went to a baby shower, where we had to park our cars in the woods,” she recalls. “I found mine afterwards, but backing up, I had to get out to see if anything was behind me. That was first time I noticed not being able to see at night.”

Seventeen years later, when she was 49, nightblindness wasn’t Alice’s only problem. Because of her diagnosis, she’d been seeing a low-vision specialist in Virginia’s department for the visually impaired, where her sight was periodically tested. By law, poor results must be shared with the state’s DMV. “So the DMV politely asked me in for a vision test, and I failed,” Alice recalls. “No more license.”

No more job either. For a few years, Alice, then divorced from her first husband, had been working on a horse farm, “which I loved, but I needed to drive to get there,” she explains. The situation rang a bell; in her early forties, she’d made it through a year of nursing school, only to discover that her hospital shift during the second year demanded she drive to work in the dark. So she had to quit.

Closing in on 50, “I lived by myself, and I was 12 miles from town,” Alice recalls. She depended on friends and family—including her daughter, Rena—for the occasional ride. Fortunately, she didn’t have to work full-time. And, years later, she met a man who’d become her second husband and go through cane training with her.

They divorced in 2007, “but we’re still friends,” says Alice, who is able to power through the down times, in part, by constantly moving forward. Today, she maintains a 12-acre farm where she breeds Australian Shepherds and rents to a boarder, so that she’s not completely alone. She also subscribes to an RP list, which enables her to network with other people affected by retinitis pigmentosa via the internet.

Alice also holds out hope for research advancements backed by the Foundation, including treatments-in-development aimed at fixing the rhodopsin gene. Rena, who’s in her mid-forties, also has RP and two kids of her own.

A couple times a week, Rena will go to her mother’s, and they’ll ride together. On weekends, friends do the same. But Alice doesn’t need company to ride—an activity which, for her, is as natural as walking.

“I bought the property I’m on now to be closer to those trails,” she explains. “They’re the best trails around, which is why everyone comes to my place to ride. No matter what else happens, I’ll always ride. They can take away my driver’s license, but they’ll never get me off my horse.”