Hilary Lister, a quadriplegic sailor who learned mouth-controlled navigation technologies to steer a boat and became the first quadriplegic to sail alone across the English Channel and the first female quadriplegic to make her way solo around Britain, died Aug. 18 at a hospital in Ashford, England. She was 46.
The cause was an infection related to reflex sympathetic dystrophy, a degenerative nervous system disorder that rendered her immobile from the neck down, said her brother, Martin Rudd.
Ms. Lister, who was diagnosed with the disorder in her teens, used a wheelchair by the time she was 17 and was unable to move anything but her head by 27. Within a few years, she discovered sailing — at a time, she said, when she had just about lost interest in life.
“I couldn’t wash or feed myself or do any of the basic things in life,” she wrote in an article published on CNN in 2005. “I was in [a] very bad place where I was assessing the quality of my life and wondering whether it was worth continuing.”
Her days were spent on the sofa, and, while she could not move her body, she could feel pain — a symptom of her illness — and relied on painkillers to make her life tolerable.
But in 2003, when she tried sailing for the first time as a passenger, she said she was “amazed.”
“It was all suddenly possible, and the next thing I knew I was out in the middle of the lake and I had the sensation of movement and . . . it was as if I was free,” she told the Sunday Telegraph newspaper in 2008.
She said she grew determined to sail alone. At the time, her wheelchair used “sip-and-puff” technology — straws that activate switches that in turn operate power controls. She adapted a similar technology to steer a boat, with two straws connected to motors. She either exhaled or inhaled to control the boat: The first straw controlled the tiller, and therefore direction; the second straw controlled the winches, which adjusted the sail. She used a third straw for drinking.
She likened the experience of being on the water and controlling the movement of the boat to flying and being given a set of wings.
Ms. Lister devoted all her available time, when not recovering from various surgeries, to learning the sport and adjusting to the English waterways in her 26-foot Soling boat.
On Aug. 23, 2005, with a map strapped to the mast, she set sail on her first big trip and became the first quadriplegic to sail alone across the Strait of Dover, the narrowest point on the heavily trafficked English Channel.
She did the roughly 20-mile journey in 6 hours and 13 minutes, according to the Independent, and was accompanied by a chase boat that monitored her progress. Because she didn’t have the energy to sail back, she was towed instead and, within days, was back in the hospital for a previously scheduled surgery.
“When I first announced that I was planning to sail across the Channel,” she wrote for CNN, “I had no idea whether it was manageable or not, but I was frustrated that everyone around me was learning to sail and I was still a passenger.”
In 2007, Ms. Lister sailed around the Isle of Wight off the south coast of England, making the 50-mile journey in an Artemis keelboat named Me Too. By this time, her story had captured the adoration of the British media, who profiled her; the sailing industry, which provided financial and logistical assistance and rallied around her; and the British people, who offered to put her up if she needed a place to sleep.
To begin her sails, Ms. Lister had to be lifted and placed into a special seat inside the boat, then strapped in across her forehead and her torso. Once on the boat and moving, she had to be vigilant of hypothermia or overheating, because her body was unable to maintain its internal temperature.
She tired often and suffered bouts of pain, and on several occasions she stopped breathing entirely. She had to be jolted awake — sometimes forcibly, said Andrew Pindar, a friend and sponsor who helped outfit her first boat with the sip-and-puff technology necessary before she attempted to sail across the English Channel.
“She didn’t know, and we didn’t know, how long she would live,” Pindar said. “She was keen to get going to achieve her dreams while she was still alive.”
Ms. Lister immediately began planning for another trip, this time a 1,500-mile journey around Britain that would require her to dock the boat at night and continue the next day. She set sail in 2008 but had to stop because of inclement weather and a strain on her health. She resumed the trip in 2009 but had to be rescued by the British coast guard because of dangerous weather, according to the New York Times.
She finally completed the circumnavigation in August 2009, becoming the first quadriplegic woman to do so. (Geoff Holt in 2007 was the first quadriplegic man to make the trip.) She had raised nearly $40,000 during the sail for her charity, Hilary’s Dream Trust, which helps people with disabilities or in financial need get involved with sailing.
“I want to get able-bodied people to rethink their views about the disabled,” she told the Independent. “We do not need wrapping up in cotton wool and can go out and do silly or dangerous things if that’s what we want to do.”
Hilary Claire Rudd was born March 3, 1972, in Hook, England, the third of four children. Her father was a vicar, and her mother was a biochemist who later became a professor at the University of Oxford.
She played rugby and hockey in her youngest years but, by 11, she developed a pain in her knees that was later attributed to reflex sympathetic dystrophy.
She studied biochemistry at Oxford, graduating in 1995. She taught clarinet and pursued graduate study in biochemistry until her late 20s, when she could no longer use her hands.
In 1999, she married Clifford Lister, a music teacher, from whom she was later separated. Other survivors include her father, Colin Rudd of Somerset, England; her mother, Pauline Rudd of Oxford, England; and three brothers.
In 2014, Ms. Lister completed her last big sail, on a Dragonfly trimaran across the Arabian Sea from India to Oman, with a crew that would take over when she tired. She completed that sail in about five days.
“I just love being completely alone on the water,” she wrote for CNN. “The whole point is having that complete freedom to control your own destiny.”