12th May was ME/CFS Awareness Day.
While living with a Chronic Illness can have its own challenges, books and movies sometimes act as a respite which help us cope with our illnesses better. Today, we have with us, Arun Dahiya who shares her list of recommended reads on ME/ CFS which have impacted her positively.
1. The state of me by Nasim Marie Jafry
It is a book written by an author who herself has Myalgic Encephalomyelitis. She has written it from a fictional point of view with Helen Fleet as central character. It is a story of a 20-something girl who is going to France in anticipation of an amazing academic career. However, soon she falls sick. She knows something is probably wrong with her but she keeps seeing one doctor from another as no one knows what is going on. She has to return back home and her life is almost limited to a dark room. However, lives of her parents, friends and boyfriend keeps going on. She feels left out sometimes as this mystery illness changes the dynamics of every relationship she has.
It is a poignant, honest memoir. It covers every aspect of chronic illness and how it impacts. It is full of emotions and beautifully teaches you how to live life in the moment.
She, so wishfully sees how other people can walk, toss their head, make spontaneous gestures or run finger unnecessarily through hairs without realising how much energy it takes. This book is about finding companionship in a painfully isolated situation.
2. The sound of a wild snail eating by Elisabeth Tova Bailey
This is one of the best works that describe the life of a person with ME/CFS in a precise and detailed manner. Elisabeth Bailey suddenly falls sick with a viral-like illness after a trip to Switzerland. It turns out she has ME/ CFS. Her life changes drastically as she is now limited to a room, almost cut off from the entire world. During one of the visits, her friend gifts her a snail. Now, she is mesmerized by the new company she has. How bizarre and similar sometimes her life is with a slow-paced snail. Also, she shares a lot of interesting details about the lives of snails, their biology, structure, scientific facts and some quirky poetic lines. She shares in detail how the lives of both( snail and her) keep going on alongside.
She is astonished after falling sick, how carelessly we take everything granted. She, so wishfully sees how other people can walk, toss their head, make spontaneous gestures or run finger unnecessarily through hairs without realising how much energy it takes. This book is about finding companionship in a painfully isolated situation.
“An important antidote to the dogmatic ‘kale and vitamins’ tone of most ‘self-help’ literature.”Alexa Tsoulis-Reay, senior writer, New York magazine
3. Surviving and thriving with an invisible chronic Illness by Ilana Jacqueline
When you are newly diagnosed with a chronic illness, this is one of the books that can help tremendously. Of course there are books specific with particular diseases , therapies medication and diet. However , this book addresses some of the basic and important questions like how to cope with this new change, how to make the most of your appointments, how to explain to family and work, how to cope on bad days , acceptance and living well with a chronic illness. It is fast, easy to understand, from a fellow person with invisible chronic Illness. It is precise and to the point , oriented toward practical solutions. And yes, not at all preachy. It helps to find solace and feel that you aren’t alone.
Have you read any of these books? Do let us know your thoughts on them.
If you have read any other books on coping with chronic illnesses that have impacted your positively? Share with us in comments below and we will feature them in our next recommended reads list.
Arun Dahiya is a teacher, avid reader and a chronic Illness warrior.