Jessica Taylor-Bearman

Originally posted on Just Geeking by.

Content warnings:
This book contains scenes of ableism including ableism towards disabled parents, mental health prejudice and stigma, death of a loved one (on page), grief, and reference to death of a loved one (off page).

This book is the memoir of someone with a severe medical condition and therefore contains a lot of scenes at hospitals, and with medical equipment, including needles. This includes scenes in a maternity unit and a neonatal ICU unit. Please note that there is a scene on a maternity unit featuring baby loss of another patient.

Part of this book takes place during the COVID-19 pandemic and contains scenes during lockdown, which may be triggering for some people.

A Girl Beyond Closed Doors by Jessica Taylor-Bearman is the third book Jessica has written detailing her journey from the start of her diagnosis with Myalgic Encephalomyelitis (M.E.). In this final book in the trilogy Jessica takes the reader through more deeply personal and moving moments of her life. As with her other books, Jessica speaks from her heart and has a delightful writing voice that always draws me in.

We’ve followed Jessica from hospitals, to one bed and then living in one room with her partner Samuel. At the end of the last book, A Girl in One Room, Jessica had successfully managed to walk down the aisle for her wedding. In A Girl Beyond Closed Doors Jessica details changes in her life that leads to her and her husband looking to move out of their one room, and into a place of their own. The biggest change being that Jessica is pregnant!

As someone with ME and multiple chronic illnesses, there are a lot of things in life that have felt off limit since my diagnosis. Which is why reading a first-hand account of someone with ME talking about their pregnancy was emotional but invaluable. Jessica was also diagnosed with hypermobile joints during her pregnancy, something I also have, meaning that her experiences were even more meaningful to me.

What I’ve truly appreciated about all of Jessica’s books is that she doesn’t skimp on details, especially when discussing medical appointments and discussions with medical professionals. I already had my eyes opened to the horrible attitudes medical professionals have towards disabled people becoming pregnant while reading We’ve Got This, a collection of essays by disabled parents. But those were personal essays rather than a first-hand account, and Jessica’s candid account offers a perspective that will be enlightening to many.

This is just the tip of the iceberg that is A Girl Beyond Closed Doors, and Jessica delivers so much more in this third book. It is a brilliant end to the trilogy and if you’ve yet to pick up Jessica’s books I highly recommend doing so.

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… (mehr)

A Girl Beyond Closed Doors by Jessica Taylor-Bearman is the third of her ME memoirs, chronicling her life with this enigmatic neuro-immune disorder. Now married to Sam, Jessica is about to embark on the daunting and formerly believed impossible path of motherhood. While it's a dream come true for Jessica and Sam, there's absolutely no doubt that the added stress of a pregnant body will make Jessica's ME act up even more. And then- the COVID years.

I first picked up Jessica's books a few years ago, precisely because she has ME. So do I, and I finally felt seen in this affliction by reading familiar responses to my own. The dysautonomia issues, intractable nausea, heart fluctuations, and blood pressure issues, not to mention the exhaustion, fatigue and excruciating pain. Catching COVID thanks to employer's lax adherence to guidelines (that they never owned up to either) ended up making my ME a full disability. Or as my doctor has it labeled, a second diagnosis of Long COVID.

I had wondered if Jessica had caught COVID, and if so, had she suffered a similar serious downturn in the ME. I'm glad to read that doesn't seem the case, though it is disheartening that her friend got Long COVID. Reading about Felicity’s birth and growth provided a delightful counterpoint to the harsh reality of living with this devastating disorder.

Highly recommended!… (mehr)

Originally posted on Just Geeking by.

I reviewed this book as part of GeekDis 2022 an event discussing disability representation in pop culture from the perspective of the disabled and neurodivergent community.

Content warnings:
This book is the memoir of someone with a severe medical condition and therefore contains a lot of scenes at hospitals, and with medical equipment, including needles. There are scenes of medical negligences, sexual harassment by a medical professional, gaslighting and ableism.

In 2005, Jessica Taylor was an ordinary teenage girl, thinking about her GCSEs and having her first boyfriend. Then she started to get sick, a feeling of exhaustion that never left after a flu bug. She’s told by her doctor that she has ‘post viral chronic fatigue syndrome’ also known as myalgic encephalomyelitis. We’re told all these details from Jessica’s diary “Bug” which she started when she was fifteen years old. Gradually Jessica’s symptoms became worse, with her unable to attend school and having to face the reality that she won’t be able to return when a truancy officer visits to discuss other options. Her health continued to deteriorate until she ended up in hospital.

This is the start of Jessica’s battle with severe ME, which she refers to as the ME monster, an apt name for the condition that takes control of her entire body. She is unable to move, eat or communicate. It’s a reality for many people with severe ME, and as someone with ME I thought I was aware of what people with severe ME faced. How very wrong I was. While I knew the medical side of things, the symptoms, I had no idea of the appalling ableism, dangerous situations and horrific medical negligence that people with severe ME have to deal with.

Using the Bug entries that she wrote through coded messages with the help of her family, Jessica complied her experiences into her memoir A Girl Behind Dark Glasses. The change in Jessica’s voice over the course of her diary entries is particularly moving, showing the effect that the ME monster has had on her. Where diary entries are not available, she adds a commentary, filling in her thoughts from when events happened. The result is a complete account that is a difficult read, but a necessary one.

A Girl Behind Dark Glasses is an excellent read that is filled with hope and love as much as it is struggles. While Jessica has had to go through so much, more than anyone should and most of it not due to her illness, this is a chronicle of her fight and her successes as much as a testament to what she has been through.

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… (mehr)

Originally posted on Just Geeking by.

I reviewed this book as part of GeekDis 2022 an event discussing disability representation in pop culture from the perspective of the disabled and neurodivergent community.

Content warnings:
This book is the memoir of someone with a severe medical condition and therefore contains a lot of scenes at hospitals, and with medical equipment, including needles. There are scenes of medical negligences and ableism.

At the end of A Girl Behind Dark Glasses, Jessica’s goal of leaving the hospital had been reached, although she had been left reeling when doctors had given her the shocking news that she had severe osteoporosis. In A Girl in One Room, Jessica’s uphill battle is still not over. While she is now at home with her family, her severe Myalgic encephalomyelitis (ME) prevents her from being able to move or sit up. This book takes us from the 2010 to 2017 and takes us through Jessica’s journey to take back control from the ME monster with the help of her care team and the support of her family.

It is a slow, meticulous process with multiple setbacks as Jessica works towards goals such as being able to sit up in bed, and sit up in a chair. Gradually moving on to working towards more difficult goals that are not just more important for her long term health, but also for emotional reasons, such as attending her brother’s wedding. You’ll find yourself cheering along, crying when she has a setback and being thankful for the online ME and chronic illness community that supported Jessica as she works towards each goal.

I remember getting to the year in the book when I developed ME and realising how much Jessica had already been through by that point, how I had no idea about ME or any of Jessica’s social media campaigns. I was disabled before I developed ME and active in the online community, and yet was completely oblivious about ME. The reason I mention all this is to point out how little is known about ME within our own community. It’s becoming more well known now through the efforts of advocates like Jessica and Jennifer Brea who created and starred in the film Unrest (which Jessica also took part in and her contribution is included in this book). Even with their work, and the awareness that has come from covid and Long-Covid, ME awareness still has a long way to go.

A Girl in One Room includes the story of Jessica meeting her husband on an online dating site. The awkwardness of her having to send her dad to pick him up from the station in her stead, so he met her dad before even meeting her in person. Jessica’s worries will be relatable to everyone who is disabled, who worries about whether someone will love them for who they are or judge them for illnesses beyond their control. I am a complete sucker for romance, and reading about a real life love story is always beautiful, this is no exception.

Once again Jessica provides an important account of what it is like to live with severe ME, never wavering from the difficult moments. Jessica has another book on the way, a third book to finish off her memoir trilogy, and I’m looking forward to reading it.

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… (mehr)