Eleven Years with Severe ME – a Young Woman Writes Her Story

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Jessica Taylor-Bearman has written a book called “A Girl Behind Dark Glasses” about her “forgotten years” of having severe Myalgic Encephalomyelitis (ME) for 11 years since the age of 15. Her book focuses on the four years she spent hospitalized during which she was unable to speak, eat or move for the first two years. Since then, Jessica has made improvements in her health but she remains bed-bound 98 percent of the time at her home in Rochester, Kent in the U.K.
Jessica and her fiancé, Samuel, have launched a Kickstarter campaign to self-publish her book with the intention to turn it into an audiobook and translate it into multiple languages. Support her Kickstarter campaign to help spread her story of severe ME far-and-wide. (As we publish this, Jessica is preparing to deliver a speech about ME to members of parliament.) 

[button_color url=”https://www.kickstarter.com/projects/darkglassesbook/a-girl-behind-dark-glasses” content=”Help Publish Jessica’s Book” target=””]

 

A post popped up on Jessica’s Facebook page recently announcing that two years ago she had sat up for the first time in nine years. Jessica has been working steadily since then to learn to walk again one step at-a-time. Her personal best, so far, is 10 steps. The doctors told her she would never walk again, but Jessica has long since learned not to trust what the doctors tell her. Jessica is particularly focused on walking right now because she has less than two weeks to train herself to walk down the aisle for her wedding on April 29th.
Jessica’s fighting spirit has charted her through every stage of her illness. She has always had a spirited, outgoing personality and before she fell ill she was a very active, full-of-life 15-year-old who loved to joke around.
“I just loved living,” Jessica said.

 
She was the netball captain, she was always outside. She tried very hard not to be ill but kept crashing and getting more and more infections until she couldn’t move anymore. She said she approached the illness with a naive, childlike mentality – she couldn’t imagine not fighting; she never imagined it would be the next 11 years of her life.
“When I became unwell, the fight in me that was my personality was the only bit that got me through when my parents were told that there was no more that the doctors could do,” Jessica said.
Jessica was moved into a Chronic Fatigue Center in the U.K. where she experienced isolation as her family was only allowed to visit on Saturdays because the doctors worried about the exertion of their visits on her. It was 2006, and tubes were keeping Jessica alive. During that time, she kept a dictaphone clipped to her shirt that recorded the noises she made for water since she was unable to speak. Eventually, she began to painstakingly speak one sentence each day that she would record on her dictaphone. Even then, she knew she eventually wanted to write a book about this experience.

Years later, she went back to listen to the recordings of her smacking her lips for water, and speaking one sentence each day. She was astonished at how vulnerable she had been, and how important her dictaphone had been to her for recording her experience.
“It was made so apparent from these recordings that the dictaphone had been my best friend,” Jessica said. “I hope this book shows the power of speech. It gives insight into what it is like to be in a world of one room. I want the book to be a voice for the voiceless – we have too many voiceless people with ME.”
Jessica said she focused all her energy on speaking again so that she could better communicate her needs at the hospital.  At first, she spoke only in whispers but it was enough to communicate something.
“I put every effort into speaking rather than moving, which is why it took me four years to move,” Jessica said.
Jessica mostly wrote “A Girl Behind Dark Glasses” on an iPod touch. She plans to write a sequel about the rest of her journey with ME beyond the first four years. She started the Facebook page, “The World of One Room,” where she posts videos and connects with the ME community worldwide, because she felt that there wasn’t enough hope for people with severe ME. 
“We need to come together and fight this – not in a negative way – but to come together and believe that we can change the way that the public and health professionals perceive ME,” Jessica said.
When she is not writing or communicating via her Facebook page, Jessica also enjoys painting through laughter, which has helped her learn how to move again. She holds a paintbrush in her hand and, when she is made to laugh, the autonomic reaction causes her body to move – mostly from the chest – and she paints a line. Her paintings have grown from laughter lines to larger paintings. She also runs a charity, Share a Star, from her bed dedicated to treating seriously unwell children and teenagers like the superstars they are for fighting for their lives.

Join in her wedding

Through her Facebook page, Jessica is asking the ME community “to help her get up the aisle” by lighting a candle for her on her wedding day on April 29th, and sharing a picture of it on social media with the hashtag #LoveShineALight.
“Wherever you are in the world, light a candle for people with severe ME on April 29th, and show that we are united together,” Jessica said in a live video on her Facebook page. She is hopeful about achieving something that doctors told her she would never do again. “My life was written off when I was 16. The doctors told me that I would never recover.”
Having severe ME has changed her prospects in life but Jessica wants her walk up the aisle on her wedding day to be an inspiration to the ME community that their lives can still be meaningful. “It may not be the life you might have planned once but it is a life that can be fulfilling and incredible.”
But it is far from easy. One day Jessica is posing a selfie of herself happily sitting on a stump that makes her appear to be standing, ecstatic to be outside for the one day she can usually manage to get out each week, and another day she spends suffering in pain in bed. The BBC filmed a clip of Jessica and Samuel at the church where they will be married, and she later suffered seizures from the exertion.
Yet, Jessica is thrilled at the improvement she has made in the past three years in her health from the years she spent isolated in a hospital unable to move, eat or speak.
“I feel that it is my duty to stand up – metaphorically – and be counted for and do my bit,” Jessica said. “I’ve had a lot of positive feedback from my story and I felt others should hear it.”

 

An Excerpt from “A Girl Behind Dark Glasses”

Jessica reads a poem her friend wrote about having ME included in “A Girl Behind Dark Glasses.”

One Stupid Dot
Me and M.E
Same letters separated by a dot
One’s who I am, one’s what I’ve got
One’s who I used to be, one’s what I’m not
Oh I’m still me, there’s just a dot in-between
But it’s a dot that can stop you from living a dream
It’s a dot that separates the M from the E
And while it’s sat there it’s hard to be me
The ‘me’ that I was in healthier days
Before the dot came forcing the parting of the ways
I’m nothing as M and empty as E
But side by side again I could be me
That dot has got a lot to explain
How can something so small cause so much pain?
So much devastation, Seems endlessly cruel
It’s just one stupid dot after all
Why does it have to be stuck in the middle?
Causing complex symptoms that read like a riddle?
I have to believe that just as it came
The dot will mysteriously vanish again
Every night before sleeping I hope and I pray
That I’ll wake up as me without a dot in the way
-Mama Chill
 
 
 

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