Review | A Girl Behind Dark Glasses by Jessica Taylor-Bearman
Published by Hashtag Press, 2018
If you’re a certain age you might remember M.E. as the ‘Yuppie Flu’ of the 80s. A condition characterised by excessive tiredness that mainly affected people in the 20 to 40 age group but which had scant medical evidence. This illness courted scepticism at the time and controversy ever since, but is now recognised, although not widely understood. The NHS website gives the following description of M.E. (Myalgic Encephalomyelitis, or C.F.S. Chronic Fatigue Syndrome):
a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. In addition, people with CFS/ME may have other symptoms, including: sleep problems, muscle or joint pain, headaches, a sore throat or sore glands that aren’t swollen, problems thinking, remembering or concentrating, flu-like symptoms, feeling dizzy or sick, fast or irregular heartbeats (heart palpitations). Most people find over exercising makes their symptoms worse. The severity of symptoms can vary from day to day, or even within a day.
In A Girl Behind Dark Glasses Jessica Taylor-Bearman vividly describes her descent from an idyllic childhood (siblings she adores, devoted, hard-working parents plus the full complement of grandparents who take a hands-on involvement in the family) into a world of debilitating illness at just fifteen. After a bout of flu she never fully recovers and her symptoms persist – every part of my body began to stop working; to even think was pushing the boundaries. Eventually her world shrinks to the four walls of her bedroom then to four years in a hospital ward, where she wears dark glasses to keep out the light. My eyes felt like sharp nails were scratching down them. Jess has the same needs and worries as any girl her age, but when she’s struck down by the ‘M.E. monster’ these pale into insignificance.
M.E is not a predictable disease; it constantly changes. A terrifying experience at any age but Jess is generous and open-spirited and has the support of her family and friends. She’s a fighter; she doesn’t want to be confined to bed, unable to talk or move; she wants to do the things her friends are doing and she wants to take her GCSEs. She’s not malingering. In spite of a lack of medical understanding, and some outrageously unsympathetic treatment and abuse by hospital staff, she never gives up. Jess uses her voice-activated diary (she calls ‘Bug’) to record her experiences, thoughts and feelings. Ultimately, with the memory of her grandmother’s support, she becomes a writer and A Girl Behind Dark Glasses is the result of her perseverance.
Written in a chatty style typical of any 15 year old, this memoir entertains and horrifies at the same time. The voice is spot-on even including some rather flowery and repetitive passages that perhaps could have been toned down in the final editing process. Describing an ambulance ride: The engine roared with delight and the back shook like a mini earthquake. The intense sensory overload was too much for me to handle; the pain throbbed inside. There was light, there was noise, it was already too much for my senses and we had yet to even begin.
In spite of her struggle to get appropriate help and to overcome the M.E. monster, Jess (now 27) still lives with the disease. So there’s not the happy ending this reader was hoping for. But in coming to terms with chronic illness this brave, feisty young woman has written a moving memoir. Since the illness started, she’s also set up a charity, Share a Star, to help seriously unwell young people, exhibited her ‘Laugh-O-Gram’ paintings, and starred in the Sundance award-winning and Oscar-shortlisted film UNREST (to raise awareness about M.E.). Oh, and in 2017 she also got married. Not bad for someone hospitalised for four years.
A fascinating and moving account of what it feels like for ordinary daily existence to become a struggle. I’d recommend A Girl Behind Dark Glasses to anyone interested in medical memoirs and particularly for a Y. A. audience.
BY ALI THURM