Former Northbourne Park Music Scholar Hilary Lister, who lives in Dunkirk in Kent and is now in her mid thirties, is paralysed from the neck down. She is suffering from a degenerative disease that first manifested itself when she was 17.
Yet, remarkably, she has sailed solo around the coast of Britain.
In July, to coincide with the Olympics and Paralympics, her achievement will be marked by a world premiere in the Marlowe Theatre, Canterbury of a 70-minute documentary film on Hilary’s life, made by award-winning filmmakers Jo Taylor and Peter Williams, and a 10-minute Arts Council-funded triptych by artist Juan delGado.
Peter Williams Television covered Hilary’s entire journey around Britain, with up to four cameras, two on board her small craft Me Too. Jo Taylor said: “It is a journey remarkable enough for an able-bodied person. For Hilary, it was a spectacular achievement, a great example of her grit and endurance.”
Hilary controls the yacht with tubes in her mouth through which she breathes, in the same way as she manipulates her computer on dry land. It is the only movement left to her, as her body has gradually shut down.
Ordinarily, Hilary is confined to her sofa at home, able to move only when carers enable her to. It is, she says, her prison. She is in intense and continual pain, controlled only by drugs. Yes, she has thought of suicide: "I have my get-out-of-jail tablets if I can't take the pain any more." But, no, this isn't a current issue. "When I am sailing, it is as if I am flying. And I am in charge of my own body."
When she sails, she experiences "a special freedom. This is the only time when people talk to me and not to the person pushing my wheelchair…"
Hilary, a biochemist with an Oxford degree and an accomplished musician, was a music scholar at both Kings School, Canterbury, and at Northbourne Park School.
On the face if it, Hilary Lister's story is about sailing around the British coast. But it's also much more about her daily fight to live and breathe; about her past life as a talented musician and sportswoman; about her attitude to the disease that has struck her down and about a truly beautiful girl coming to terms with an early and inevitable death, all in the context of this sailing adventure.
This is a documentary built from exclusive access to a life-changing, life-enhancing experience…
Six times during the voyage, Hilary collapsed and was rushed to hospital. Six times, she decided to sail on. When the engine of the rescue boat failed, £9,000 had to be found and the challenge put a huge strain on Hilary’s tight-knit team. The voyage is a feat of skill and endurance that earned Hilary nomination as World Sailor of the Year…
Peter Williams said: “We have known, and admired Hilary for much of her life. To be given access to anyone’s life is an enormous, and in many ways, frightening, responsibility. This is a film which, we hope, tells it like it is, for Hilary and for the people around her, a film about the triumph of the human spirit.”
Hilary Lister; A Race Against Time is being shown at the Marlowe Theatre Studio, Canterbury on Thursday July 19, Friday July 20, Monday July 23 and Tuesday July 24 (6.30pm). Tickets £5 (concessions £3) are available from the Marlowe Box Office. All profits go to Hilary’s Dream, Trust.