Martha Steele, Recovering

RECOVERING GRACE

AFTER SHE LOST BOTH HER VISION AND HER HEARING, MARTHA STEELE THOUGHT HER SKI DAYS WERE OVER. BY PHYL NEWBECK

Growing up in Burlington, Martha Steele, now 69, went downhill skiing at Stowe and Smugglers’ Notch. When her family moved to Westmore, where she still lives for most of the year, she skied at Burke Mountain Resort and picked up Nordic skiing as well. But as Usher Syndrome gradually robbed her first of her hearing and then her vision, she skied less and less. By the 1990s, Steele thought her days on snow were over. But in 2015, she met Frank “Gib” Gibney, the founder of The Gibney Family Foundation. Gibney, a resident of Colchester, volunteers for Vermont Adaptive Ski and Sports. In January of 2017, he got Steele back on her skis at Vermont Adaptive’s Sugarbush facility.

“It had been at least 20 to 25 years since I skied and I was ecstatic,” Steele said. “My muscle memory came back quickly. The hardest part was overcoming not being able to see and struggling with my hearing at the same time — while doing something I used to be able to do with all my capacities.”

Steele was born with limited hearing. The cause, Usher Syndrome, was diagnosed when she was five. She was prescribed hearing aids, but it wasn’t until she was in her 50s that she was able to get the cochlear implants, which improved her hearing to roughly 90%. By then, however, her vision was already severely limited.

“Usually with Usher Syndrome you start with low night vision and then your peripheral field narrows and then your central vision goes,” she explains. For Steele, the visual issues began in early childhood. “I was diagnosed with retinitis pigmentosa in 1977 when I was 25,” she says. “At that time, I still had excellent central vision, but was compromised in both night vision and the peripheral field.” Today, her vision is completely gone.

For their first foray, Gibney took Steele out on the green and blue trails at Sugarbush’s Mt. Ellen, where Vermont Adaptive Ski & Sports has a new base. She wore an orange bib and a headset equipped with a radio, so Gibney could communicate with her.

“Gib went over the standard commands before we headed out so I would fully understand what they mean,” she explained. “In downhill skiing, the guide will explain what’s ahead of you and what the terrain is like. You go a certain distance and stop and discuss the terrain and then do that again, so you’re prepared for changes and turns.”

Guides tell skiers when to turn, say “hold” when they can keep skiing their line, and indicate when a steeper section is coming with the word “pitch.”

“It was very, very exciting,” she said. “It was a little terrifying, at first, especially when we picked up speed, but Gib was terrific.”

When Steele first returned to the slopes five years ago, she was able to make out the trees on the side of the trail, but that visual remnant is now gone. But it hasn’t kept her from skiing. “That makes it almost easier,” she said, “because my brain doesn’t have to process any vision at all.” Skiing with the same guide is also helpful as she has been able to relax over time as she is familiar with Gib’s guidance..

Three weeks after getting back on alpine skis in 2017, Steele headed out on Nordic skis with an organization called Ski for Light. She now skis with the New England chapter at Craftsbury once a year and in February of 2020, she took a trip with the national organization to Casper, Wyoming. “It was great to be with lots of other people who were blind and who were very good skiers,” Steele said, noting that she was also able to ski with Gibney as her guide on that trip. “The highlight really was connecting with others who enjoyed skiing,” she said.

Explaining the differences between Nordic and alpine skiing, Steele said there is less stopping while crosscountry skiing, although a guide will note if there is a downhill that might require either a snowplow or a turn in the track. Cross-country guides can also be either behind, in front of, or next to the skier, but Steele said most of her Ski for Light guides have skied alongside her.

Steele believes her loss of hearing was a greater impediment to her return to skiing than her loss of vision. “The radios help address the hearing issue,” she said “but if they go out or get loose, especially in alpine skiing, there isn’t a lot of time between being told to turn left and having to turn left. I couldn’t ski without the radios,” she says. “I think downhill is more difficult because it’s scarier,” she added. “Obviously, you have to have tremendous trust in your guide. A steeper slope can be frightening, but it doesn’t paralyze me.”

For much of her career, Steele worked as a scientist at the Massachusetts Department of Public Health (MDPH) and spent 20 years as the Deputy Director of Environmental Health there before retiring in 2015. “Through adaptive technology, such as devices that magnified print and content on web pages I was able to work successfully and productively until I retired,” she explained.

In the off season, she enjoys hiking near her family’s property in Westmore. An avid birder, she identifies species exclusively through birdsong. But skiing is her main sport.

Steele especially enjoys it when Gibney brings her to ski a wide hill. Normally, she is always listening for his guidance, but on the wide-open slopes he will utter the word ‘free’ and then she’s on her own. “Usually he’ll say ‘hold, hold, right, hold, left’ but when he says ‘free’ I can turn right and then left on my own and it’s just beautiful,” she said. “It’s the same with cross-country. There are times when I’m just gliding and pushing off on my own. I’m not hanging on to anyone or my guide dog. I’m just skiing.”

One downside to Steele’s cochlear implants is that they have impacted her balance. “These days—especially the last five to ten years—I don’t feel particularly graceful,” she admitted when doing everyday activities. “When you’re blind you always have to be more careful, but you still bump into things. But when I’m on skis, I’m an athlete again. I’m a graceful person again and it’s an absolutely incredible feeling.”

Steele is back on skis and heads to Craftsbury again each winter. Photo

courtesy Marrha Steele