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, by Jessica Taylor-Bearman
Free Download , by Jessica Taylor-Bearman
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Product details
File Size: 2587 KB
Print Length: 210 pages
Publisher: Hashtag Press (January 18, 2019)
Publication Date: January 18, 2019
Sold by: Amazon Digital Services LLC
Language: English
ASIN: B07MXSYNLF
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Amazon Best Sellers Rank:
#2,187,756 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
Being a teenager is difficult. It's a lot more difficult when you're suddenly saddled with a debilitating illness.For those of you who've seen Jennifer Brea's award-winning documentary "Unrest," "A Girl Behind Dark Glasses" is the story of Jess, the English ME sufferer featured in the film. It chronicles her earlier active childhood, her descent into serious illness, and her attempts to pull herself out.Like most stories about ME and its brethren, this is not the triumphant narrative most "illness" books promote. Jessica is not cured by the end of the book, and she's still not cured today. Her triumph consists of escaping from abusive care situations and finally returning home to the care of her family.Jessica's writing style is simple and straightforward, and while the story is harrowing, much of her actual writing is the kind of hopeful fare you would expect from a teenage girl. She had wanted to be a writer before she got ill, and the thought of writing about her experiences was the thing that pulled her through some of the worst things that happened to her. Unable to write herself in a normal way, some of the sections are journal entries she painstakingly dictated to her parents, using the code they had devised since she was too ill to speak normally.The story focuses on the initial onset of the illness and then the four years Jessica spent in various hospitals, where she was dismissed and mistreated by doctors, and sexually abused by a male nurse (why do they have male nurses helping teenage girls dress and care for themselves, anyway?). The story of Jessica's sexual abuse is particularly horrifying, as she is literally trapped, unable to get out of bed or even tell her story to others around her, and when she finally does communicate what is happening, she is--surprise, surprise!--blamed for the abuse and the trouble her allegations cause.Consequently, although the writing style is simple, the story is not an easy read, and sensitive readers may find themselves tearing up in places--and rightly so. An honest and brave narrative of a tragic situation, that still manages to find hope despite the lack of a stereotypical "happy ending."
I found the author after watching the Unrest documentary (which I also highly recommend) and decided to pick this up as soon as I heard it was coming out. I hadn't yet read or seen anything from anyone else with ME beyond the documentary, so it was partly because of my own experiences with ME that I wanted to read it, but also to support a book that shares the experience the world should see and understand.I ended up finishing the book in one go. It wasn't an easy read; it gets very intense at times and pulls no punches, and can sometimes be downright heartbreaking. That's a testament to the writing itself just as much as the experiences it describes; the writing is smooth and emotional and easy to get into, both knowledgeable and personable. The underlying current of hope is wonderful, and perhaps even necessary, for some of the things in here are almost too awful to believe. But that's the state of society and medicine's understanding of ME, which is why books like this are so important.It was an emotional ride, but I feel much the better for reading it, and it's definitely one I'll recommend to everyone.
This insightful book exposes the fragmented and inadequate responses to addressing myalgic encephalomyelitis (ME). This is a severe and for many, a life-threatening illness. The institutional abuse outlined is inexcusable. I encourage all to read this.
This is just what the ME community and the world needs. A well written story that despite the severity of the condition is filled with hope.
As a fellow sufferer of a severe case of Chronic Fatigue Syndrome, as it's known in the States, I empathized with the heartbreaking tale of a life cut short, understood the frustration of dealing with the medical community, and thought this was a great story to get out there for others to try to see what this disease is all about. Though my experience with this illness is different, as all cases differ in severity and presentation, I believe the write hit the finer points of navigating an illness few can truly understand unless they unfortunately have it. But this is great way to start loved ones or even newly diagnosed patients with a window into this world.
Powerful story about how the medical community doesn't believe women, children, and their bodies. Taylor-Bearman faces trauma of the body due to a little understood disease and multiple hospitals that view her more as an experiment than a person. She braves the disease, world, and life through the lens of closed eyes protected by glasses and an imagination to keep her sane. Warning, this memoir is not something to read if you are looking for a smile. It is dark and honest. If you have chronic pain or an invisible illness, you will find yourself in these words.
A Girl Behind Dark Glasses is nothing short of a biographical genius at a young age. As someone who has ME, had severe ME, and nearly died from it, I waited with bated breath for my copy of the book. When I started reading it, I must admit though it’s not a long novel, it took me starting and stopping because of how hard it was to read what Jess went through. The hospital stays, abuse by medical professionals, and the blatant disbelief that this neuroimmune nightmare was in her head. Jess is a hero, a warrior princess in the ME community all around the world. Anyone who has ME, has family or friends struggling with it, or are physicians who actually want to help, I urge you to read this book. Trust me, you’ll never see ME the same way again! A+
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