Author sheds light on a little-known degenerative disease

Anna Lickley. Picture by Bruce Rollinson
Anna Lickley. Picture by Bruce Rollinson
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Anna Lickley was first diagnosed with the rare inherited disease NF2 as a teenager, undaunted she has lived her life to the full. Julie Marshall reports.

Although Bingley author Anna Lickley has a very rare debilitating condition which has rendered her deaf, almost blind and with limited mobility, she is not battling it, beating it or fighting it, or any of the other war metaphors so beloved of journalists.

Instead, she just accepts it and deals with her lot, the best way she can.

Anna has Neurofibromatosis type two, or, as those in the know refer to it, NF2.

But, despite what she says, the 39-year-old, who was born in Ilkley, is a truly amazing woman who leads a remarkably independent life.

The house, which she moved into just before her condition deteriorated in 2010, is three storeys high with steep, narrow stairs and the front door leads out onto an unmade road – not the ideal place for a woman who has difficulty walking to live.

In fact, she makes few, if any concessions to her condition, her bedroom is on the first floor and she has her computer and exercise bike on the second floor, forcing herself to make the difficult journey to and from the attic whenever she needs to work.

Apart from help with communication for a few hours a week she does everything else for herself including cooking, cleaning and washing and has developed techniques for dealing with the everyday chores that appear insurmountable for someone with her level of disability.

She admits to being frustrated and says: ”There are the big things, like not being able to get out of the house, nip to the shops, see the sky, jump on a train.

“But other smaller ones can seem even harder to remain calm about such as not being able to read your post until someone comes to visit or sitting in the dark because you can’t change a light bulb without breaking a leg.”

Anna has not always been so disabled. Although her NF2 was officially diagnosed in 1991 she continued to lead a full and active life. In 2000 she ran not only her own business but her second London marathon, this time in four hours 48 minutes, after training for a year and covering in excess of 30 miles each week; now she struggles to walk from room to room and needs a taxi every time she leaves the house.

The idea for her book, Catch it Anytime You Can, which was published last year, came from a blog that Anna began in 2010 to try and make sense of her condition.

She soon realised she enjoyed writing and was encouraged by the positive reaction to her posts to attempt something more challenging.

Using her alter ego Nicola as the main character and written in a mixture of first and third person narrative, which skips around the years, she allows the reader to dip in and out of specific chapters of her life, gaining an insight into what it’s like to live with an incurable condition.

As she says: “My book is semi-autobiographical and the character of Nicola is largely based on my own experiences. Some events or opinions reflect experiences of people I have met who have NF2 or other disabilities and some are an amalgamation of several people I have known through life.”

It runs to 186 pages and throughout there is not one word of self-pity or reproach, instead it is a positive affirmation of a life lived to the full with no regrets.

NF2 made its first appearance when Anna was a child living with her mother, father and older sister Katherine in Ilkley. Although at the time it was undiagnosed the first indications that something was wrong were when one side of her tongue collapsed and she developed a cataract in her right eye.

By the time she became a teenager her hearing was severely affected and she became completely deaf in her right ear when she was 16.

Undaunted Anna took and passed a clutch of GCSEs and A levels and went off to Sheffield University to study French, spending a year in France as part of her course, despite being completely deaf by this point.

After graduation, employment opportunities were limited until she discovered, and was accepted on to, a graduate training programme for disabled scholars.

Upon successful completion she set up her own company as a British Sign Language tutor, at one point running residential BSL courses on a working farm in Wales teaching sign language and deaf awareness.

That was until NF2 tightened its grip on her and, in 2010, she was forced to give up work.

Anna’s life over the past 23 years has been an endless round of hospital visits, operations and treatments to halt the spread of the tumours, give her a better quality of life and, more recently to restore some of the sight in one of her eyes.

Communication is difficult as her severe facial palsy makes her words unclear and she relies heavily on a sign language interpreter.

This causes problems of its own. “I have talked to disabled people, particularly people born with impairments,” she says, “who feel very wrapped in cotton wool and suffocated by people’s needs to ‘look after’ them like injured creatures and find it very tough to develop their own sense of being independent.

“When I need help, there is a huge difference between being told not to worry as someone else will do it for me and a support worker saying, ‘OK, no problem, tell me how I can help with that’. That way I still feel independent and in the driver’s seat even though I need lots of help.”

• Catch it Anytime You Can is available from Amazon and in The Grove Bookshop, Ilkley and Salts Mill Saltaire.