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.
I heard Ms. Lister interviewed last night on NPR of all places. I was a ‘driveway moment’ as they say. She has had such challenges, and such a beautiful dream that she is now realizing, yet she also sounded emenently practical and level headed. Her boat, a modified Artemis 20, strangely seems to have no name.