Quadriplegic sailor challenges elements again
Fundraiser aims to sail solo around the British Isles aided by 'sip and puff' controls
As a quadriplegic woman with a life-threatening degenerative condition which limits her to just a few head movements, sailing solo around Britain was always going to be an awesome task for Hilary Lister.
So when she had to call off her attempt last year, after three months of appalling summer weather and technical difficulties, there was sympathy but perhaps little surprise.
However, the same indomitable spirit that first sent the 37-year-old Oxford-educated biochemist out on to the water means she refuses to leave a challenge half-met. In May, she will set sail from Land's End, again attempting to circumnavigate the British Isles and to become, in the process, the first disabled sailor to conquer the Irish Sea.
"When I finished last time I felt pretty lousy really," Ms Lister admitted at the weekend as she began preparations for part two of the challenge to raise money and awareness for her charity Hilary's Dream, which aims to get disabled people sailing.
She acknowledges that her condition has deteriorated over the winter months. "Dying is a possibility," she says. "It is not unlikely. I have a degenerative disease, so at some point I will stop breathing. The whole of my family think it would be great if I was on the water when it happened. That is where I am happy."
Ms Lister is able to sail thanks to recently developed "sip-and-puff" technology which allows her to alter course and trim sails using her mouth and a straw. She also has a support team which delivers her on and off the water each day.
Returning to "normal" after calling off the last voyage was not easy: "Life carried on in a quite bizarre way because you have come back from this incredible experience and suddenly you are stuck back on the sofa again.
"If I am at home I get put on the sofa by one carer at 9am and taken off by another carer at 7pm and put to bed."
In between she tries to keep mentally alert by writing letters, organising her next adventure and avoiding daytime television. The fiercely independent former scientist has suffered from a rare degenerative disease, reflex sympathetic dystrophy, since the age of 11. It has steadily robbed her of her physical powers and causes agonising bone pain, alleviated by powerful drugs.
Last year it was the weather and the equipment that were problematic, she said: "We have learnt a lot since, such as salt water and electronics don't mix."
Raising sponsorship in the midst of the credit crunch has also proved a challenge, though she says she is lucky enough to have at least one deep-pocketed supporter who acts as her "backstop" when the financial going gets tough. She says she has been overwhelmed by messages of support and was particularly moved by emails from one severely disabled little girl. "It is a huge honour to be seen as an inspiration to whoever, really. I have my down moments like everybody else. But today is a beautiful day," she said. "The sun is out and life is good right now."
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Comments
There are two broad categories of quadriplegics - high-level and low-level, depending on where in the neck their injury is. A person injured at C5 to C8 will have substantial mobility in their arms, albeit with impaired sensation, and may or may not need assistance with personal care (Holt does; I know a woman with a C6 injury who doesn't).
A high-level quad (C1 to C4) is paralysed from the neck down (a C4 quad may have some, but not much, arm movement). Hilary Lister's impairment is equivalent to a high-level injury although her condition is RSD and not a spinal cord injury. She is, however, the first high-level quad to achieve this; Holt was the first quad.
During the interviews I have been present at, Hilary has talked about Geoff and I don?t doubt that on this occasion she gave him due credit. It is unfortunate that ?first disabled sailor to conquer the Irish Sea? was interpreted as ?round Britain?. Due to the different nature of the boats (and the individuals), the East Coast of Ireland is the preferred route for Hilary, while Geoff?s project sailed England?s West coast.
Having been with this project for almost a year now, it is difficult to see her inexorable deterioration and not be impressed by her determination (sheer bloody mindedness) that her condition will not stop her finishing what she started last summer.
Toby May
Project Manager
Hilary?s RBD