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Not Without AFight
IN THE FACE OF A BRUTAL ILLNESS, HILARY LISTER SET HER HEART ON ONE DARING ACT OF INDEPENDENCE
BY ROBERT KIENER

LIVING LIFE TO THE FULL
Hilary with husband Clifford near their home in Kent

Even from the shore you can hear her delighted shouts, carried by the wind over the rippled surface of Westbere Lake, near Canterbury. A puff of wind fills the 16-foot Wayfarer’s mainsail and the boat surges forward. Hilary Lister, a wheelchair-bound quadriplegic who can move only her head, is thrilled to feel the boat pitch and roll beneath her. The Wayfarer catches another gust of wind
P H OTO G R A P H E D BY B A R R Y M A R S D E N

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and speeds away under the late September sun. Strands of fair hair blow messily across her face, but Hilary doesn’t care. She leans her head back and shrieks, “It’s just like I’m flying!”

‘‘M

e too,” is what her three brothers called her when they were growing up in Hook, Hampshire. She hated being told that she couldn’t do everything her brothers did. If they climbed a tree, she insisted on joining them. If they chopped wood, “Me Too” would grab the axe and take her turn. Wrestling, swimming, cycling, running, kayaking; Hilary wanted to do everything she saw her brothers do. And she did. Hilary, daughter of a vicar and a biochemist mother, was also a gifted student and earned a scholarship to Northbourne Park School at seven years old. She racked up firsts in academics, music and sports. She was a keen hockey player and an award-winning swimmer. Everyone who knew her agreed: Hilary was on her way. She was 11 when her legs began aching. “Growing pains,” her doctors said. Others accused her of “making it up”. Then one day, aged 15, she phoned her mother from the train station: “Mum, you’ll have to fetch me,” she said. “I can’t walk.” After two years of tests and false diagnoses, doctors finally settled on reflex sympathetic dystrophy, a rare degenerative disease that attacks the nervous system and can cause agonising pain. To Hilary it

seemed like someone was sticking a knife in her and twisting it. By the time she was 15, Hilary was in a wheelchair. In shops and supermarkets she would notice people staring at her. If she caught their eye, they’d quickly look away. She knew it was a frequent reaction to the disabled, but that didn’t make it any easier. Even as her body weakened, Hilary’s intellect remained razor-sharp, winning her, at 19, a place at Oxford’s Jesus College to study biochemistry. She moved around Oxford in her wheelchair and by learning to drive a specially equipped car. And even with her legs trailing uselessly behind her, she was still a powerful swimmer; the water put her on equal terms with other students. Sometimes she would slip into the Oxford town swimming pool and sneak up on a male swimmer doing laps. She’d zip right past and watch for his reaction. Then—delighting in his expression even more—she’d crawl out of the pool and drag herself to her wheelchair. There was no let-up in her disease. In 1994 when her final exams were due, she was in agony in a hospital bed, but her “Me Too” spirit was unquenched. She insisted on being dressed like other students in the traditional Oxford examination garb they dubbed “dishcloth”, a black skirt, white blouse and black robe. She sat up in bed with a morphine drip in her arm and wrote her essays. When the pain of writing became too great, she lay on her back and dictated answers to her tutor’s secretary. Then

OUT AT SEA
Controlling a 26-foot boat by means of two plastic straws

she read them over to make sure they were copied exactly. She amazed everyone by earning a 2.1—one rung short of a first-class degree. But an Oxford degree is no shield against people’s perception of the disabled. Maybe, she wondered, being at a child’s height in her wheelchair made people subconsciously treat her like one. One day when she was taking a taxi, the driver asked her companion: “Where does she like to sit?” Hilary shot back, “I’m disabled. I’m not deaf!” Hilary continued her studies, determined to get a doctorate. By then the disease was working its way into her upper body and arms. One day, in the college laboratory, a flask of liquid

nitrogen slipped from her hand into her lap. The minus 196 degree C liquid seared deeply into her flesh. She knew what this meant; without being able to work in a lab her academic career was over. But there was one bright—one shining bright—spot in Hilary’s life: Clifford Lister, a music teacher she had first met while taking singing lessons. The trim, brown-haired six-footer seemed almost blind to her disability. It was one of the things she loved about him. In London for a rehearsal at the Royal Albert Hall, Clifford needed cash for a parking meter. He was late, so he told her: “Why don’t you go and find a cash machine?” Friends who were
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with them were aghast, but Hilary was secretly delighted. As fast as she could, she wheeled the quarter-mile to a cash machine. When she returned she found a parking ticket on the car. She hid the ticket, fed the meter, secretly paid the fine and didn’t tell Clifford for years afterwards. In 1999 Hilary and Clifford were married. At the reception she was fed by her bridesmaid; she was now a quadriplegic.

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our years later the disease had stolen so much of Hilary’s life that she could move only her head. She depended on caregivers to brush her teeth, comb her hair, feed her and help with her most personal functions. And then there was the pain. As she once explained: “The only nerves that work properly are the ones that carry deep pain. When you stub your toe you get a sharp pain; I don’t get that but I get the throbbing that follows it. If you stick a pin in me I don’t feel it.” For such a bright outgoing person the combined effect was catastrophic, slowly sapping her will to live. Then, on one of her darkest days, she decided to make a will and write farewell letters to Clifford, her family and friends. She knew just how much morphine she’d need to take. But, as she typed, she repeatedly broke down. As the tears flowed she knew she wasn’t ready to end her life; not yet. But it was like speeding towards a brick wall; the only thing she wasn’t sure of was the exact moment of impact.

It was a chance dinner with neighbours Julian and Sue Owen that turned her life around. Julian, a fanatical sailor, told her they belonged to a charity that took disabled people sailing on nearby Westbere Lake. “You should try it,” he said. On a glorious September day Sue and Martin Cox, the club’s operations manager, strapped Hilary into a garden chair lashed to the transom of 16 foot Wayfarer, with a board to put her feet on and another to keep her head upright. Martin was at the helm. A puff of wind filled the Wayfarer’s mainsail and the small boat took off. Hilary was ecstatic: here she was under this impossibly blue sky, surrounded by mallard, herons and a pair of majestic swans. She luxuriated in new sensations, the wind in her hair and the pitch and roll of the boat. I really am sailing! For the first time in years, disease no longer imprisoned her. Even her pain seemed less severe. “Wheeee!” she let rip, “this is fantastic!” When Hilary was hoisted ashore half an hour later, something had changed within her. “Me Too” was alive again. A few days after her first sail she called Martin Cox and asked, “Any chance of another sail?” Soon she was out every week, in every kind of weather. She felt the sun on her face and the wind and the rain. Each time, for precious minutes, the boat worked its magic and pushed the pain to the back of her mind. Over the next year and a half she

spent more and more time sailing. Only one thing frustrated her. All around her, kids were learning to sail and she was just a passenger. How wonderful it would be, she thought, if she could really sail the boat. After an afternoon of blissful sailing, Hilary said: “Martin, I’d like

equipped yacht and escort boats. Offers of help came from yachting associations. Just one small detail was missing: Hilary still had to learn to sail. Back on Westbere Lake she was strapped into a Wayfarer and shouted out directions, “boat to port”, “boat to starboard”, “sheet in”, “sheet out”,

‘I’d like to cross the Channel alone. Do you think it’s possible?’
to cross the Channel. Do you think it’s possible?” “You mean, alone?” “Solo. By myself. Is it possible?” Bloody hell, thought Cox, who’d grown very attached to Hilary. He paused then answered, “I’ll look into it.” Soon Westbere Sailing Opportunities volunteers met to discuss Hilary’s idea. Some were appalled: “You’ve got to be kidding!” “Too dangerous.” “She’ll kill herself.” A well-meaning member offered to take Hilary across the Channel in his 40-foot yacht. “You are missing the point,” she told him. “I want to sail the boat myself.” Hilary was a force that was hard to resist. Stirred by her vision, Richard Gaskell, the charity’s chairman, took her to the 2005 London Boat Show, hoping to arouse interest in Hilary’s idea. Round-the-world yachtswoman Emma Richards enlisted her sponsor Pindar, which promised a specially to Martin or Richard Gaskell who worked the sails and tiller blindfolded, relying solely on her commands. In the Solent, Hilary spent exhausting summer days, duct-taped into a sailboat, learning the rudiments of sailing from an instructor with the charity Inventure Trust. She worked through the pain, which—despite six grams of morphine daily—was agonising. Each day she was hauled out of the boat, exhausted and soaking wet. But each day her sailing skills improved. A week before she was due to cross the Channel, Hilary’s specially equipped boat was ready and she could begin familiarising herself with the controls. Strapped securely into a form-fitting racing-car seat, she used two plastic straws in her mouth to control the 26 foot keelboat, now christened Malin. Sucking and puffing triggered micro switches
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STEERING CLEAR
Dwarfed by a channel ferry, Hilary navigates a busy shipping lane

linked to the motorised sails and tiller. The first outings went well, but after a total of only four and a half hours on the water she was told that a hurricane was approaching the midAtlantic. Within days it would be too rough to cross the Channel. Forecasters told her she could go, but her window was closing fast. “Don’t do it. You aren’t ready,” a senior yachting official warned. But Hilary wasn’t ready to have this stolen from her, too.

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t is 8am on August 23 last year and Hilary is strapped into her seat on board Malin and is beginning her bid to become the first quadriplegic to sail solo across the 21-mile English Channel. Massive ferries loom over her nowinsignificant boat as a motorboat tows her to the Dover harbour limits. One of the support boats lets go of the

tow lines and the engine noises fade as they drop back behind her. She is on her own, master of her fate. Elated, she puffs at her straw and sweeps the boat round full circle so she can see the white cliffs behind her. Then the mainsail fills and Malin thrusts forward for France. Three miles offshore the wind picks up and the swells increase. This is a far cry from the calm Solent. Ten-foot waves seethe against the hull as the Malin surfs up and down the turbulent waters. Clifford, nursing rising nausea in an escort boat well behind, watches anxiously as the Malin repeatedly disappears from view. Then he hears a familiar voice on the ship’s radio: “Whoopee! This is fantastic!” The constant sipping and puffing is exhausting, but Hilary keeps working the straws. A rogue wave smashes

against the boat and soaks her. I’ve come too far to pack it in now, she thinks. She checks a compass strapped to the mast and alters course. Experts had advised her to use an autopilot to automatically steer the boat. “No way,” she’d told them. “I’m doing this myself.” But even now, with adrenalin in her veins and her mind totally focused on the job, Hilary feels the knife of her pain begin to twist. She is ready for it. With her tongue she flips open a canister attached to her shoulder and swallows 40mg of morphine. After more than five hours on the water, afraid that exhaustion will overtake her, the support team radios Hilary to end the crossing at the Abbeville buoy instead of heading all

the way into Calais. Sod that, Hilary tells herself. I’m going all the way. Just outside Calais a cross-Channel ferry stops to see her pass, and greets her with a loud Whoop, whoop, whoop from its horn. Hilary’s eyes fill with tears as she sees hundreds of people lining the ferry’s decks, cheering her on. At 2.39pm—six hours and 13 minutes after leaving Dover—Hilary Lister enters Calais and the record books. After Hilary’s daring voyage and the saturation coverage that followed, there are many in Britain who will never look at quadriplegics in quite the same way again, which is exactly what she hoped for. But her battle to change perceptions is far from over. “I went to see

HOME FREE
Celebrating with Clifford and round-the-world yachtswoman Emma Richards

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Wallace & Gromit with Clifford the other day,” she says. “The ticket guy said: ‘Does it want to sit at the front?’ ” She adds: “I’m often referred to as it. When I see people staring at me I try to smile at them and they smile back; this breaks down that wall. It makes them see you as a person.” Hilary Lister knows that she has limited time left; the disease that has paralysed her is affecting her breathing now and will likely take her life one day soon. But she is not afraid. “I had a near-death experience once and it left me feeling as if a part of me was missing. I know that I will be whole again once I am reunited with that bit. The only way that will happen is when

I die. So I have no fear. And it will be the end of my pain.” Recently the wheel of Hilary’s life turned full circle when she began taking disabled kids out on Westbere Lake. One was an autistic boy. “The next day his grandmother called me and said the night after our sail he had looked his mother straight in the eyes and given her a huge cuddle and a kiss. She had waited six years, his entire life, for him to do that.” Hilary pauses, then adds: “It was his way of saying, ‘I’m flying’.” Hilary Lister now plans to sail solo around the British Isles. See www.hilarylister.co.uk.

GETTING TO KNOW ONE

As the Queen celebrates her eightieth birthday, here are the “facts” about her life—reported in the press over the years—that might not quite make it on to one of those glitzy tribute programmes. • She was an obsessively tidy child who would get back out of bed if she had forgotten to cover her used underwear with a silk scarf. During one French lesson, however, she tipped a bottle of ink over her own head. • As a teenager, she did her Christmas shopping in Woolworths. • Prince Philip once threatened to throw her out of his MG when she complained about his driving. • Her hobbies include jigsaws and watching television. Seventies detective series Kojak was a particular favourite. • She hates teabags and gardening. • Not afraid to meet her lowliest subjects, she personally removes the fleas from her dogs. • Once, while looking for duck eggs, she fell into the Buckingham Palace lake. • When she is very angry, she drums her fingers.
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