From Legs to Wheels

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 of 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 sport. 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 and Royal Albert Halls 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 has 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 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 husband whom Hilary 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 now is such that she is quadriplegic, only able to move her head, eyes and mouth. She lives in Kent with her husband Clifford and their chocolate labrador Lotti. Her home is wheelchair friendly and equipped with modern technology allowing her to use her computer through voice recognition. Through a switch she operates with her forehead, Hilary is able to control some of her environment, like changing channels on the television, answering the phone and opening the front door.

However, she relies totally on her husband, carers and friends to do so much of her life for her.

When Hilary says "sailing saved my life", she means it ...

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Page last updated on 12 March 2013 at 16:29

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