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My Review of 'A Girl Behind Dark Glasses' as a Fellow ME Patient

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“I was an inventor, a researcher, a model, and I travelled the world through my imagination. At that time, it was my only saving grace. I existed in a place I called Limbo Land, hovering between the conscious and the unconscious. I could hear my family talking to me, see images of them, yet I couldn’t reply or make sense of what they talked about.” – Jessica Taylor-Bearman

I have just finished reading “A Girl Behind Dark Glasses: and I was so impressed I decided to write a review. “A Girl Behind Dark Glasses” is written by Jessica Taylor-Bearman and it’s an account of her life and struggles with a severe form of myalgic encephalomyelitis (ME).

For those of you who haven’t heard of Jessica, she is a courageous young woman who featured in Jennifer Brea’s powerful film “Unrest.” Jessica became acutely ill with ME at 15 years old; prior to this she had been a normal, active, energetic teenager. She spent many years in and out of the hospital and spent a long time paralyzed in a locked-in syndrome state, bedridden, unable to move, speak or eat.

She began to write in her mind, and when finally able to speak again, she began to write through her audio diary “Bug.”

“I loved the concept of creating lives and being able to tell precious stories, allowing others into my imagination so that my stories could become special to them too, simply by the words that I used. It is somewhat magical, don’t you think?” – Jessica Taylor-Bearman

My thoughts about the book:

It’s very hard not to get angry as Jessica retells how she was treated by so-called ME specialists and by medical professionals in general. I know from personal experience how painful light and noise are, I know the agony caused by the simplest physical activity, I know the exhaustion caused by mental exertion and the frustration of not being believed. I can only imagine the damage caused by the inadequate and harmful treatments she was forced to endure, and how scary it must have been to lose her voice and her ability to defend herself.

But Jessica was failed on so many levels, not just in the treatment she received. The people trusted with her care failed to protect her and keep her safe from harm. There are some heartbreaking moments that had me in floods of tears: tears of sadness and tears of anger. She was mistreated, neglected and abused when she was at her most vulnerable – how could this be allowed to happen?

“Vulnerable I may be but I was born a fighter, and this will only temporarily break me, I told myself firmly.” – Jessica Taylor-Bearman

“A Girl Behind Dark Glasses” is not a sterile account of one person’s struggles living with ME – it’s far more than that. Jessica is an extremely talented storyteller and every word was a pleasure to read. But don’t get me wrong, the ordeals she has experienced and documented don’t make for an easy read, and her words often brought me to tears because I could feel her pain like it was my own. Like many great writers Jessica draws you in with her imaginative narrative and keeps you engaged with every page – I found myself lost in her world. I am amazed by her strength; Jessica never gave up fighting, she never gave up hope and she never lost herself or her sense of humor.

I have followed Jessica’s story for quite some time now and her unwavering positivity, her sheer passion for life and utter fearlessness no matter what life throws at her are infectious. Her personality jumps out from every page.

I would love to say Jessica’s story is unique but unfortunately it’s far more common than people realize. Medical professionals don’t understand this debilitating illness and many still refuse to believe it exits. We are frequently told it’s “all in our heads” or given therapies like graded exercise therapy (GET) and cognitive behavioral therapy (CBT) which are not just ineffective for us – they can be extremely dangerous and damaging for patients with ME. For this reason, “A Girl Behind Dark Glasses” is a vital narrative in raising awareness of ME. Please don’t underestimate the importance of this book: It is vital that the neglect and the damage caused by outdated and harmful treatments, like GET, are documented. One of the main symptoms of ME is post-exertional malaise (PEM) which is characterized by a worsening of symptoms following activity. Exercise harms us! It causes us pain and a severe deterioration in our health. These kinds of treatment still go on today and many people with ME continue to suffer under the care of incompetent, uneducated and unsympathetic medical professionals.

I urge everyone to read “A Girl Behind Dark Glasses.” It’s not just a story about one person’s struggle with the “ME monster” – it’s far more than that. It’s a story of love, family, friends – of hope, strength and courage.

I am in awe of Jessica’s determination and her enthusiasm for life. Although she has battled through unimaginable traumas, her story still remains a positive one, and her compassion towards others is remarkable. I am humbled by her courage and I look forward to following her story as she continues to progress in her journey through life. Jessica Taylor-Bearman is a name to watch in the literary world – I wait with excited anticipation for her next book.

Jessica’s aim has always been to raise awareness of this debilitating condition. Please help her achieve this by buying her book and spreading the word. Thanks for reading. Take care.

Originally published: July 9, 2018
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