More about Hilary
Hilary was not born quadriplegic, in fact she was a very sporty child, enjoying swimming, hockey and rugby in particular. If there was a ball involved, then Hilary wanted to play! However, after coming off the hockey pitch with aching knees one day at the age of 11, Hilary was eventually diagnosed with a degenerative disease, which would slowly limit the use of her body as she became older.
After she became quadriplegic she felt as if she had lost everything she’d ever cared about, from biochemistry to music. An introduction to sailing in 2003 through Westbere Sailing Opportunities provided a fresh impetus and transformed life for Hilary. In her words “It turned a light back on inside me”
In 2005, Hilary Lister made history by becoming the first ever quadriplegic to sail solo across the English Channel. It was the start of a journey, pushing back the boundaries of technology and challenging her body to achieve what many people continued to tell her was impossible!
From Legs to Wheels
As she said at the time “Sailing gives me a sense of freedom that I never thought would be possible again ..”
Hilary Lister had her life worked out from an early age. It was all planned, she was going to be a biochemist. She knew which exams she needed to pass, what grades she had to get, even where she wanted to work! Simple. Just stick to the plan.
Growing up in Hampshire with three brothers resulted in Hilary being a bit of a tomboy. Hilary went to a boarding school just outside Deal, in Kent when she was 8. She enjoyed an active lifestyle and participated in a variety of sports. Particular favourites were hockey, swimming and netball (captaining her school team in each sport). Hilary also fenced and was placed 3rd in 1984 in the Kent Under 13 competition. Hilary also enjoyed rugby and canoeing.
When Hilary was 11, she began to experience discomfort in her knees whenever she played her beloved sports. It started with shooting pains in her legs, which she first dismissed as growing pains.
By the time Hilary turned 13, she was in pain everyday and by the age of 15, she could no longer walk. Not something a teenager needs at that stage in her life. Doctors put Hilary in plaster from ankle to thigh and she was given a wheelchair. This meant Hilary was unable to return to school, which was difficult as it was the beginning of her GCSE year.
Hilary tried as much as possible to lead a ‘normal’ life – albeit on 4 wheels rather than 2 legs! She continued to play the clarinet with the Oxford County Youth Orchestra. By the time she was 23 she had toured all over Europe and was regularly playing in venues such as the Festival Hall and Royal Albert Hall in London. Hilary also gained her Teaching Diploma in 1991 from the Guildhall School of Music. She won the only music scholarship for sixth form entrants to the King’s School, Canterbury which allowed her to go back to school.
Hilary had an amazing sense of not letting life pass her by, which became evident in her teenage years. Despite her body slowly giving up on her and her becoming paraplegic, Hilary did not sit in her chair doing nothing. She started swimming and working out in the gym several times a week. Hilary’s commitment saw her swim fast enough to qualify for the Great Britain Paralympics squad. However she could not commit to the training schedule due to her desire to complete her school exams. After all, she was going to be a biochemist!
It was then discovered Hilary had a progressive neurological disorder, diagnosed as Reflex Sympathetic Dystrophy (RSD), which meant that over the coming years, as Hilary grew into a young woman, she would gradually begin to lose the use of almost all of her body whilst still leaving her in incredible pain.
Hilary studied biochemistry at Jesus College, Oxford receiving a high 2.1, despite having to dictate her papers whilst flat on her back with an epidural drip on her spine. Hilary was offered a DPhil position at Oxford but chose to move to the University of Kent in Canterbury, to be near Clifford, her then boyfriend, whom Hilary eventually married in 1999.
Just before she married Clifford, Hilary began to lose the use of her hands and arms. Hilary could no longer drive, continue her work as a biochemist, or play her clarinet. More than that, the most basic tasks, like eating and washing, suddenly had to be done for her.
With her condition worsening, Hilary was forced to give up her life bit by bit – her mobility, her career as a biochemist, a secondary career as a clarinet teacher and most importantly, her independence.
After losing everything she had always worked so hard to achieve, Hilary was housebound. After four years of complete inactivity and total dependence on others, she began to weigh up whether the quality of her life made it worthwhile continuing. During these darkest moments she was tempted to end it all but then there was a miracle.
A friend introduced her to sailing. It was the first time she had left the house in three months. “Going out of the front door that day was the hardest thing I’d ever done”, she says. Within a few minutes of being at the lake however, out in the wind and sunshine again, she had fallen in love with sailing and had found a new reason for living. It provided a fresh impetus and transformed life for Hilary.
Hilary’s condition was such that she was quadriplegic, only able to move her head, eyes and mouth. Her home was adapted and wheelchair friendly, equipped with modern technology allowing her to use her computer through voice recognition. Through a switch she operated with her forehead, Hilary was able to control some of her environment, like changing channels on the television, answering the phone and opening the front door.
However, she relied totally on her then husband, and carers and friends to do so much of her life for her.
When Hilary said “sailing saved my life”, she meant it …
Hilary’s first outing in a boat was in September 2003, at Westbere Sailing Opportunities, near Canterbury, Kent. The WSO is a remarkable group of people who immediately see through the gadgets and disability and find the real person.
From her first moment in the Wayfarer boat, Hilary fell in love. Secured on a garden chair with a board down her back and another one under her legs, she was sailing. She was hooked and knew immediately that sailing was now going to become a large part of her life.
From the Wayfarer, Hilary graduated to passenger on a Challenger trimaran. This provided some fantastic sailing on the Westbere Lake, but it wasn’t long before she grew frustrated of being the passenger. Hilary wanted to sail a boat herself. Hilary started ‘sailing herself’ with her friends at WSO, who allowed themselves to be blindfolded whilst Hilary ‘sailed’ them around the lake. This was so they only did what Hilary told them and stopped fiddling!
It was Hilary’s longing to be independent, to grasp the freedom that was almost within reach, which gave rise to her dream to sail across the English Channel. “I first dared to mention my dream towards the middle of August (2004). It was pretty obvious that people thought I was a little mad, that the dream was a ‘some time in my life I’d love to …’ type dream. Little did they know how determined I would become!”
Hilary went to the London Boatshow in January 2006 with her dream. She had never sailed a boat in her life, she had no sponsors, no money. To be honest she didn’t even have an idea whether it was technically possible.
At the boatshow, Hilary spoke to the Royal Yachting Association. They offered to help on a ‘one step at a time’ basis. Hilary would sit the theory Day Skipper and Competent Crew Courses and learn the basics of Radio operation. In return, they would provide help through the UKSA who would teach Hilary to sail a boat, once she had a boat she could sail.
When Hilary went for lunch at the boatshow, she chose a place outside a bookshop. She she spotted a sign announcing that Emma Richards would be signing books in 10 minutes! Here! Right beside her!
This was an opportunity not to be missed. Hilary had followed Emma’s progress as she sailed around the world in the 2002 Around Alone Race. She had even seen her on TV! Her sporting hero was coming in 10 minutes!
Hilary met Emma who asked what she was doing at the boatshow. Hilary told her all about her dream. Emma was so impressed by Hilary that she phoned her sponsor (Pindar) that night and said, “You know what we were going to do this summer? Well, how about doing this as well?” Andrew Pindar agreed. It was an amazing stroke of luck for Hilary!
The team from Pindar lent her a boat, a 26’ Soling keelboat she named Malin. Matt Debecki from the Inventure Trust converted it so that Hilary could sail her.
Thanks to the generous sponsorship of Pindar, the UKSA and the support and practical help of many others, on August 23rd, 2005, Hilary achieved her dream.
In a ‘Guardian’ interview not long before she died, Hilary’s response to the question “What is it about sailing then?”
“You have a freedom on water you don’t have anywhere, well I don’t. It’s hard to explain what it’s like being stuck in a wheelchair. Here I’m the boss. As well as steering, I can chose to sail flat, or go faster. It’s wonderful to have choice again.”