It is an interesting thing. For some, their biggest physical accomplishments in life, their grandest adventures, come after only immense physical hardship. Something about veering so close to the line between life and death, mobility and incapacity, they choose not just life, but quite a lot of it, all at once, in ways they hadn’t necessarily before life took a physically immobile turn.
So it was with Hilary Lister. A woman for whom life confined to a bed was more distressing than sailing the open seas of the North Atlantic, totally alone, with little experience on the water—and no use of her hands and feet. In 2008 Lister, a quadriplegic, became the first solo woman with a disability to circumnavigate Britain by sail. Her arrival at that point was remarkable.
“Sailing has given me back a sense of freedom I never thought would be possible. It has, quite literally, saved my life.”
Lister was born in Hook, England, in 1972. An active child, she rode horses, played rugby and field hockey. But by age 11, something was wrong. Her legs betrayed her. They grew numb and lost feeling and she had no idea why. Doctors didn’t either. At one point a doctor plastered her legs from ankles to thighs in casts which ended up fusing her bones. They had to be rebroken when the casts came off, an experiment that proved a total failure. Soon after, other doctors suggested her condition was mental and she entered talk therapy.
Finally, by 17, she Lister was properly diagnosed: reflex sympathetic dystrophy. By that point she was using a wheelchair. Within ten years, the degenerative condition had claimed her mobility from the neck down.
Still, Lister led an active mental life. She earned a biochemistry degree at Oxford, and later pursued a PhD until her deteriorating physical abilities made lab work impossible. Until her hands eventually failed her, she enjoyed playing the clarinet.
As she became increasingly confined to a couch, her frustration, boredom, and despair mounted. “I get put on the sofa by one carer at 9 am and taken off by another carer at 7 pm and put to bed,” Lister said. She was also in unbearable pain, a cruel twist considering she’d lost functional sensation. Lister didn’t have the sensory ability to move her limbs, but she could feel intense pain as though she was being stabbed through her joints with knives.
Spending most of her time motionless on a sofa, staring at a garden out the window, Lister at one point decided to overdose on morphine to end her pain. At the time, Lister discussed her plans with her husband, Clifford. The two of them decided that it was a rash decision, born from being cooped up inside for too long. Lister pressed on.
Not long after, a friend offered to take Lister sailing on a lake near by. When she arrived at the local sailing club, they winched her into a boat and offered a garden chair strapped to deck for her to sit in.
“It was all suddenly possible,” Lister said. “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.”
That experience changed everything.
“Sailing has given me back a sense of freedom I never thought would be possible, Lister told the NY Times. "It has, quite literally, saved my life.”
Lister began studying methods for sailing that might be available to her and she was delighted to discover “sip puff” technology that allows for controlling the tiller and sails without hands or feet. Through a series of straws, air pressure changes controlled by the user’s mouth trigger microprocessors at the steering and rigging to completely control the boat. Just like that, Lister had a calling. She’d get off the couch and begin sailing.
First, she learned the chilly, wind-lashed waters around her England home. By 2005, after sailing for a few years, she crossed the English Channel solo, the first quadriplegic person to do so; at the time it was the furthest any quadriplegic had sailed all alone. Lister piloted a 27-foot Soling christened Malin from Dover to Calais, France, in just over six hours. “I set off across the Channel with a map strapped to the mast,” Lister said.
Two years later, Lister sailed solo around the Isle of Wight, a 150 square mile island off England’s southern coast.
Having successfully completed that voyage, in 2008 she took on her grandest sail yet, the total circumnavigation of Britain. Poor weather forced Lister to abandon that sail, so, in May of 2009 she again set off. This time, she was able to sail through uncertain conditions and at the end of August, she completed her circumnavigation—a distance of 1,500 miles.
It nearly killed her.
Lister sailed in the company of a support boat and six times medical personnel had to board her craft to resuscitate her when she struggled to breathe, something that happened regularly at Lister’s home too. She communicated by radio to her support boat and when she began to quiet, they’d come along to administer aid.
Lister had to be lifted into her boat and strapped to a specially modified seat. She could not use the bathroom on her own and would have to endure that for hours until her support crew could come aboard to assist. Capsizing would mean certain death. Hypothermia was a constant threat. But Lister carried on, determined to not only finish her quest, but to show that disabled people are more than capable of great adventures.
“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,” she told the Guardian.
The sailing world was awestruck by Lister’s feat. The International Sailing Federation named her as one of the top four sailors in the world after her voyage around Britain.
Lister’s final significant sail was in 2014 when she crossed the Arabian Sea, this time with a crew on board.
“Always look ahead, always assume you will live forever,” she once said, “and if you don’t, you don’t.”
By 2016, Lister’s health began to fail. She suffered from an infection related to her condition and in 2018, at age 46, she passed away. But only after overcoming tremendous pain and mental anguish to live a rich life out on the water, sailing on her own, no longer stuck on the couch, her body borne across the water by the wind and currents.
Words by Justin Housman