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Wednesday, 4 December 2019

A Girl Behind Dark Glasses, Jessica Taylor-Bearman


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A Girl Behind Dark Glasses is one young woman’s story of life with a chronic illness that is largely misunderstood and desperately under researched. She is fifteen when Myalgic Encephalomyelitis (ME, also known as Chronic Fatigue Syndrome) comes into her life. Up until then she had been active and fun loving, enjoying spending time with her family and sharing the dream of becoming an author with her grandmother. It seems as though her dreams are shattered when she becomes hospitalized, unable to move or speak. She comments on the humiliations of the early months and how eventually they fade, although the feeling of being treated like an exhibit rather than a human remains.

She finds solace in her audio diary, Bug, and offers an honest portrayal of her experiences. Readers will be shocked by the lack of compassion shown to her by medical professionals and their actions and treatments that make her condition deteriorate. She suffers cruelty, her family only being allowed to visit briefly once a week, essentially condemning her to solitary confinement with carers who do not take the time to learn the codes that she’d built with her family to allow communication.

There are terrifying accounts of traumatic procedures without any support in place. During one period she suffers abuse at the hands of a member of staff who is meant to be caring for her. It is shocking to read that even when the truth came out he was let off and it was Jessica who suffered as other staff began to treat her differently.

It is overwhelming to see all that she went through and the diary style format makes it feel both very real and honest. This isn’t a book with a fairytale ending but the shining star is Jessica and the amazing positivity and determination she possesses, along with the love and support of her closest friends and family. Since being diagnosed she has created paintings that were first exhibited at the Canterbury Art Festival. She also founded a charity, Share a Star, to support other children and young people who are suffering from serious illness.

Pick up a copy here.

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