From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive. This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice activated technology diary called Bug’ that enables her to fulfil her dream of one day becoming an author. It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.
Jessica Taylor-Bearman shares her inner-most thoughts and real-time emotions – adapted from her diary growing up as a teenager in South-East England – as she experiences the terrifying discovery that, aged 15, instead of partying, studying and socialising, she would rapidly become bed-ridden, ultimately unable to move, speak, eat…Despite the odds, Jessica never gave up. Her dream was to become an author, to be able to marry, leave the hospital, enjoy life. In July 2018, her first book, A Girl Behind Dark Glasses, was published by Hashtag Press. – Jessica features in a film called Unrest by Jennifer Brea, a journalist and filmmaker from New York, which aims to raise awareness about severe Myalgic encephalomyelitis (M.E). After winning a prize at the Sundance Film Festival in 2017, the now Oscar-nominated film is now on Netflix, coinciding with a review of the controversial National Institute for Health and Care Excellence (Nice) guidelines into the diagnosis and management of the illness.
Twitter:@jayletay
Website: www.jaytay.co.uk
A Girl Behind Dark Glasses/ A Girl in One Room by Jessica Taylor-Bearman are a pair of memoir books that span the life of one courageous young woman struck down by an insidious invisible illness called Myalgic Encephalomyelitis, or ME for short. At the age of just fifteen a viral infection triggered this neuroimmune disorder in its most severe form. Jessica went from a vibrant, healthy, active teen to being bedridden. Plagued with extreme forms of the hallmark full-body pain, debilitating fatigue, and sensory sensitivities, she lost the ability to move, to talk, to read, watch TV, eat with her family, and a thousand other things the average person takes for granted.
Jessica ended up spending years in hospital, put through pseudo-treatments such as graded exercise, which do NOT help ME, subjected to careless caregiving by medical professionals who did not understand this disease, and exposed to abuses no vulnerable patient should be by those who are their caretakers. This young adult was sadly given the same discriminations that still plague sufferers of ME, and so many other invisible illnesses today.
‘You’re just lazy.’
‘You’re not really sick.’
‘It’s not that bad.’
‘It’s psychological.’
‘Must be nice to just lay in bed all day.’
‘Noone can help you unless you help yourself.’
My personal favourite that I’ve heard is ‘You just need to talk to someone. A therapist.’ Basa su getta, but ignorance does abound, sometimes innocent, but oft latent or blatant malice.
Through her own indomitable will and (finally!) the help of knowledgeable professionals, she was able to eventually regain some measure of movement, and her speech. Jessica set, and met, milestones in recovery such as regaining speech, sitting up again, standing after years, but it was difficult. This disease doesn’t like to be challenged. Some days one innocent action can cause a week, a month, or longer setback. She learned to not fight the ME Monster, as she calls it, but to listen to when her body was saying ‘enough for now.’ She started the Share a Star charity, to help bring hope and inspiration to kids & families dealing with chronic illnesses. She documented her own goal milestones to raise awareness, was nominated for (and received some) rewards for outstanding work in raising awareness and offering support. Through it all, she made and lost friends, turned into a young woman, got married.
By this point, or close to, Jessica has lived half her life with ME. Any such divider is a sobering thought. When I was twenty, I lost my right eye. I’ve now lived over half my life purblind. I also have ME, albeit a thus far lesser form thankfully, though a bout of COVID pushed me from mild to moderate. My dividing line will be in only 15 years… I still fight against what ‘was’, sometimes quite resentful of what’s been lost. Other times I have a ‘que sera‘ attitude. I have family who don’t understand, and who sometimes forget that I can put on a Stoic face and ‘function’. That doesn’t mean I can do whatever they want of me. Mental stress can trigger flares just as easy as physical stress. Sometimes a person with ME can be pushed into what I call a ‘shutdown flare’, and Jessica calls Limbo Land. The body’s energetic battery is completely drained and the mind says ‘peace out’. You sleep for hours or days as the body struggles to spark the charge again. But is it restful? Hellz no.
Reading her memoirs made me feel validated in a way I had yet to do so before. My heart cried to think that she was afflicted so young, and so severely. I honestly had no idea it could get that bad! If you have someone in your family who suffers from ME, or a friend, acquaintance, colleague, or you just want to understand this elusive, poorly studied condition better, from the perspective of a sufferer, I encourage you to read A Girl Behind Dark Glasses/ A Girl in One Room. If you don’t come out the other side with greater empathy, something’s broken with your compassion circuits. Just sayin’.
****Many thanks to Netgalley and Hashtag Press for providing an egalley in exchange for a fair and honest review.
