Hero at the helm: the ultimate lone sailor

Dover has witnessed more than its fair share of emotionally charged departures over the years. But yesterday, as the sun glistened brightly on the English Channel, few in this famous old port town can have failed to be moved by the quiet heroism of the woman at the centre of a tiny flotilla, as it battled its way though the white caps on the first leg of a remarkable voyage around the coast of Britain.

For Hilary Lister, the woman at the helm of the 20ft keel boat making the most of the afternoon's sea breeze, days are typically spent immobile, staring out of the window of her bungalow in Kent. Unable to dress or feed herself – she cannot change the channels on the television set without assistance – Ms Lister, 36, is completely reliant on carers to cater for almost every need.

Since the age of 11 the fiercely independent former scientist has suffered from a rare degenerative disease called reflex sympathetic dystrophy. Over the years it has steadily robbed her of her physical powers so that today she is quadriplegic – paralysed in all four limbs. The only movements she can make are with her head, eyes and mouth.

To make matters worse, Ms Lister who, before the illness took hold was a talented sportswoman, musician and studied biochemistry at Oxford University, is in a state of near-constant agony, alleviated only by powerful drugs. At its best, she says, the pain is like sandpaper between the joints. At its worst, it feels like a "knife being plunged in".

And yet, despite the apparently overwhelming odds stacked against her, and the certainty that her illness will continue to ravage her body, increasingly affecting her ability to breathe and possibly destroying brain function, she remains determined not only to overcome the odds herself but inspire others to emulate her through her charity,Hilary's Dream Trust.

Yesterday, following a frustrating week-long delay for bad weather, Ms Lister embarked on what many are describing as the most incredible voyage ever undertaken by a disabled sailor.

Using specially developed "sip and puff" technology which allows her to control the sails and the helm of her boat, she will sail for three months around the British coast. The journey will take her westwards along the Channel, round the treacherous waters of Land's End, before turning to the north and following the coast of eastern Ireland. A testing slog across the Irish Sea will bring her to Scotland's scenic but unpredictable west coast from where she will sail through the Caledonian Canal and back down the North Sea to Dover.

Weather permitting, she will take to the water for four out of each seven days for 12 gruelling weeks, returning to port each night where she will try to recover her strength in a specially converted motor home attended by a trained crew of carers. She will need all the help she can get with some of the sections expected to keep her at sea for up to 18 hours of physical and mental toil.

It is a task that would challenge the most able-bodied of sailors, let alone someone rendered virtually immobile by a little-understood condition. Ms Lister says she knows that the circumnavigation could be the last chapter in an astonishing nautical life that has already seen her defy the odds by becoming the first person with her scale of disability to cross the English Channel. She also sailed round the Isle of Wight. This time she admits she is playing for the ultimate stakes.

"In the worst situation I could die. That is absolutely the worst thing that could happen, but it might," she admitted before setting sail. "Some people would say it was foolhardy for someone as disabled as me to be sailing round Britain. But whenever we get out of bed, or cross the road, we all take risks. We have to cover as many of those risks as we can."

But as she concedes with a disarming frankness that has won the admiration of leading sailors such as Dame Ellen MacArthur and Emma Richards, her disability means she must contend with a terrifying range of "added risks". The main fear among the support crew that will follow in a separate vessel at a respectful half-mile distance is that she will stop breathing, something which happens two or three times a week when she is at home but which – up until now – has yet to occur while out sailing.

They have been trained in stimulating her lungs back into action, although Ms Lister has already laid down instructions that, should she stop breathing for five minutes, the team must not resuscitate her. They are also under orders to administer no CPR whatsoever – to stand and watch her die – something she admits is "asking a huge amount" from people who have grown to love her over the weeks and months of preparation.

"But I have been ill since I was 11 and actually if my body thinks it's time to give up – it is time to give up. And, if I do die, it will be doing something I love."

And her motivation? "I am doing it for the journey, for the sheer challenge of getting up every day and having a really hard sail and for the love of being out on the water."

For her husband, Clifford, who is a professional singer and conductor, there was never any question of trying to persuade her to stay at home despite the dangers.

He said yesterday, after waving her goodbye from the start line: "I am a little bit concerned. It is a bit of a daunting trip. It was exactly the same when she went across the Channel, but the fact that she has now gone across the starting line is half the expedition. Preparation is a big chunk of the battle."

He said he has no plans to travel with her, but the couple will meet at certain points en route. "You can't just drop everything for three months but I will be with her in spirit," he said. "Any concerns about her health have been overtaken by the adrenalin – you cannot be too navel-gazing about these things. I didn't promise to do the decorating when she was gone so I have no commitments on that front – I'll just get on with things."

The couple first met while Ms Lister was studying music at school. He was her teacher, and recently separated. She was the ultra-keen student in the wheelchair.

Ms Lister had already been through a great deal but she continued to enjoy her life. Doctors had initially written off the tingling in her legs as growing pains and then thought it might be psychological. The family was encouraged to undergo therapy in which issues of child abuse were painfully investigated.

When the muscle-wasting disease was finally diagnosed, she was forced to endure the pointless plastercasting of her legs which resulted in her bones fusing and eventually having to be broken and reset.

Yet she still looks back on those times as her glory days – when she could do everything that her friends did, albeit on wheels.

Her relationship with Clifford blossomed during her time at Jesus College, Oxford, though by now her condition was rapidly deteriorating. A make-or-break operation on her arms failed, resulting in the loss of all movement in her upper body. She was forced to give up working in the laboratory. On her wedding day she was spoon-fed the meal by a bridesmaid.

Five years ago, the suffering nearly became too much. Despite being paralysed, she was in constant agonising pain and she knew that all the things she cherished – science, music, children or merely wrapping her arms round her husband – were now forever beyond her reach. "It was so dull sitting there. I just couldn't see the point in continuing," she said.

After talking with Clifford, she decided that she would take an overdose of the morphine she continually needs to keep the pain at bay. This was not suicide, she insists, something she considers people do out of weakness, but considered and rational euthanasia – a sign of strength.

But, instead of ending her life, she took up sailing. On the suggestion of a friend, Ms Lister paid a visit to Westbere Sailing in Kent, which helps disabled people get out on the water. She instantly fell in love with the sensation of skimming across the waves and almost immediately determined to set out to cross the Channel. But she did not stop there and set her eyes on a more challenging venture. With trademark determination, she brought on board the world's experts.

A British designer, Simon Rogers of the Hampshire-based Rogers Yacht Design, created for her the kind of "cool" boat that anyone would want to sail – whether disabled or able-bodied.

Steve Alvey, the Canadian engineer who originally devised the "sip and puff" technology to help a disabled friend resume the sport, also became a firm supporter and admirer.

"What she is doing is so important," he said. "For someone who cannot put a spoon in their own mouth, who can't get out of bed in the morning to get out and feel the spray and the freedom of sailing. It is about making people realise that anyone can live an active life – no matter what their disability."

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