Read May 2019. Published 30th May 2019.
Laura Fjellstad, born in Norway, is plagued with medical problems from birth. She is diagnosed very early with hypersensitive allergies to many triggers in her environment, including many different foodstuffs. Her parents are both medical professionals and seem consumed with the need to ensure that their family lives as normal a life as possible, despite Laura's medical issues.
Laura yearns for a sympathetic home life, with parents who would make her feel safe and cherished, but instead she settles into a routine where it seems impossible to make a fuss and simply accepts everything that her many medical visits throw at her without complaint. She becomes used to seeming compliant on the surface, while her emotions are churning underneath the surface.
Laura's one solace is figure skating, which makes her feel strong and free.
Not content with subjecting Laura to the many limitations placed on her due to her allergies, Life has another curve-ball to throw her - after years of unexplained pain, Laura is diagnosed with severe endometriosis - so severe that many of her organs are fused and she requires urgent and extensive surgery to try to mediate the effects of this debilitating condition.
Laura becomes consigned to a life of chronic pain and must try to life as normal a life as she can with the limitations of her condition.
This is an unusual book in that it is written in reverse chronology. When we first meet Laura, she is in her thirties and living in New York. She is divorced and a single parent to a young daughter. Life is hard for Laura, living with chronic pain and exhaustion, while trying to be a good mother to her daughter. This sometimes seems an impossible task, but being a mother carries responsibilities that cannot be ignored. Laura must carry on for the sake of the daughter she thought she might never have.
The book then jumps back in time to describe other events in Laura's life, through her eyes - such as meeting her husband; first coming to New York; her past relationships (with both men and women); and the crushing diagnosis that changes the course of her life - all the way back to her childhood days of freedom on the ice. The text is interspersed with technical descriptions of jumps and spins from figure skating, like some sort of totem.
This book is understandably stark, but not depressing. Although it is sad to end the novel on the thoughts and dreams of the fifteen year old Laura.
Laura comes to realise that she can lead the kind of life she wants is to, although it will certainly not be easy. Her inner strength is unfathomable and although she thinks she may break at many points in this story, she does not. This is a story of incredible success against the odds - of being able to do the kinds of things you thought were denied to you, simply by being brave enough to give it a try.
Living with chronic pain is not a picnic. Parts of this book are necessarily distressing, raw and full of painful emotions. You do not need to be a sufferer of endometriosis to feel a connection with Laura's story. This will resonate with anyone who has suffered from a painful chronic condition or disability, especially the feelings of invisibility and powerlessness.
In Laura's case, she finds her way by doing things on her own, and moving away from her childhood home. There are two very strong reasons why she chooses this - firstly, she cannot deal with the guilt she feels at putting someone she loves through the experience of dealing with her illness (and so leaves her first love Kjetil behind, eventhough she knows he loves her); and secondly, because she needs to make a clean break from her past, and to live somewhere everyone she meets does not associate her with her illness. She finds her strength by relying on herself and throwing away the requirement to remain compliant.
There are lots of questions raised by this book and it is one you will find yourself thinking about a lot, after you have read it - which you must certainly do! It left me thinking a lot about compassion and whether this is something infinite, or whether those close to someone living with a chronic condition can suffer from compassion fatigue - like Laura's family and some of her friends. The sufferer does not chose to suffer, but it seems that sometimes those closest to them feel unable to forgive them for being ill, even though they love each other very much.
Ultimately, this is a powerful and intimate account of finding the your place in the world, despite tremendous adversity. It is about relationships; our connections with people; inner strength; hope; and the rewards gained from living our life the best way you can.
Thank you Karen Havelin and Dead Ink for this moving story.
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