Three years ago I read and reviewed Jessica Taylor-Bearman’s first book. The book chronicled her adolescence living with acute, severe and bloody terrifying chronic illness. Namely ME. I knew that Jessica had experienced a slow improvement lasting beyond the tentative first steps of the first book and having connected with her since, I was keen to learn how that improvement has progressed. I was also rather curious to learn how she’d met her husband!
My own health has fluctuated a great deal over the last year and I found that half way through reading A girl in one room, I just stopped. My own body had crashed and I was faced with the painful reality that my condition had slipped from improving – moderate ME to, on many days, floating about in severe ME territory, spending much of the day in bed and conserving what strength I had to welcome my kids home from school and ensure that they ate food to stay alive!
So my reading of A Girl In One Room was completed in two parts, almost a year apart because you really do have to be in the right mindspace to read either of Jessica’s books. While I may have at times had cognitive energy to read her follow up memoir, I didn’t have the emotional energy. So much of the early stages of the book outline challenge after challenge for Jessica and her family. Following the abuse and ignorance Jessica experienced during the period of her first book, comes more gaslighting, lack of empathy and limited resources for support from health and social care professionals.
When you personally have lived through similar, albeit less severe, rejection from the health sector, it feels heartbreaking to read Jessica’s story because there won’t be a single ME patient who cannot identify with many of the themes. I wonder if I had to wait to be in a better headspace and improved health to read on because often surviving life with ME means not dwelling on the reality of how very horrific the illness is. When we empathise with someone else’s story, we also hold up a mirror to our own existence. And sometimes we see things that we would prefer not to see. Jessica calls the insidious nature of the illness, the ME monster. Living with ME really is a horror show, it’s a daily wrestle with a living nightmare and Jessica’s starkly honest and open writing exposes the monster for what it is, a cruel and unforgiving beast.
The second part of the book sees Jessica overcome obstacle after obstacle, from her first date, to public speaking, winning awards for her charity work and finally walking up the aisle. Each and every obstacle, while met with perseverance and determination comes with significant repercussions and Jessica’s writing highlights how those of us with ME do not battle with the illness, rather we live strategically doing our best to minimise its tyranny in our lives.
One theme that runs strongly throughout the book is hope. Jessica constantly demonstrates how hope for something better keeps her going in the darker times, she set herself goals, and whether she succeeded or not, she would not give up. This resilience isn’t born out of foolhardiness but years of learning how to live strategically with the ME monster.
I loved reading how Jessica met and developed a relationship with her now husband and being reminded of how vital the internet is for developing and maintaining relationships when, as people with ME, we’re stripped of the ability to access social environments. It’s an timely lesson not to minimise the importance of the online world in meeting our emotional and social needs.
If you read Jessica’s first book, I’d highly recommend this second one. If you haven’t read the first one, I’d suggest making time to read that first, and be aware that both books deal with themes which may trigger emotional responses while reading. These books are an excellent resource for helping people gain an insight into and empathy for those of us with ME, and those with severe ME in particular. After I read Jessica’s first book a lecturer from the university of Sunderland visited me as she wanted to hear my ME story as part of her research. I gave her my copy of Jessica’s first book with the hope it would be shared around the university facility, because it’s those very institutions where we need understanding, compassion and empathy to grow so that academic influence can be cascaded throughout the fields and health and social care.
Books may end on happy notes, but lives go on. The ME monster stalks us at every moment and each day is a new challenge for survival and recognition. We might not be able to fight the ME monster, but we can dwell in solidarity as we find ways of avoiding its advances, together.