Suffering Beyond Imagination
One Last Goodbye by Kay Gilderdale is a book which I found distressing to read, but one that I would recommend to anyone who is interested to understand something behind the confusing picture that life with severe ME (Myalgic Encephalomyelitis) can present. For decades now the media, in particular, has portrayed the disease as a psychological affliction. This deeply affected the way that the family in this book were treated both by the medical profession and the community with tragic consequences. This book has particular relevance as what is not widely known is that there are approximately 25% who fall into the severe category. Some are housebound and some are bed bound, many live in isolation abandoned by the medical profession.
A Life Lost Before It Began
Lynn was only 14 when she became ill following a BCG injection and a series of viral infections. What followed was 17 years of utter misery in which all of her bodily systems were failing. One night Lynn attempted suicide, and Kay her mother assisted after being repeatedly begged to do so. Until I read this book I simply could not understand how a mother could possibly act in this way, giving up on all hope and respecting her daughter's wishes. Having two daughters myself the thought of losing either of them fills me with utter fear and desolation. However, having read the book, and suffering from moderate to severe ME myself, I began to understand how these events unfolded. I decided that I could not judge her actions, but rather try to comprehend the circumstances. In doing so I began to see the suffering that Lynn endured, and calm descended over me knowing she was free from all the pain, and her mother Kay was left to grieve for ever. It left such a deep image in my mind- one that I will never forget.
I read this book on a 10 hour flight on the way to the Maldives last summer. I sat watching the clouds pass by thinking how lucky I was to be able to make the journey at all, as many times over the last fifteen years I have been bed bound for weeks on end. I am one of the lucky ones as I can rest and gain energy and sometimes gain some control of my destiny through pacing - Lynn was not so lucky.
The book is an easy read in terms of the flow and the words. The first three chapters are lightweight and set the scene describing the family and their way of life. I think this section is important as they were an ordinary family with a happy background. The book then details Lynn's illness which progresses rapidly into a serious case of ME in which she quickly becomes paralysed. and over subsequent years she loses the ability to swallow and had to be tube fed. I think this book is an important read as it details many of the physical symptoms and medical complications that affected Lynn. By the time she died she had adrenal failure as well as severe osteoporosis. Her heart was also failing.
Over the years Lynn was in hospital in excess of fifty times, and by the time she died she had so many medical complications that her quality of life was negligible. In Lynn's eyes she was broken. Kay explained that she said to her "I really can't go on I am too broken. You can't fix me any more. We have to do something." It was not an isolated occasion that desperation set in but it was becoming more intense with every passing day. I really value the way in which Kay documents this as she simply relates events. She isn't looking for anyone to let her off her actions but simply wants the story to be told as it was. It would have been so easy to write a book simply to clear her name and sideline herself from any guilt or involvement.
The night she passes away is sensitively written, and I went from thinking how could she help in such a dreadful act to a degree of acceptance. The tragic end comes after the book so eloquently portrays the suffering and the years of agony that this act releases.
Of course this final act sets in place a chain of events leading to the trial in which Kay is accused of assisted suicide. The way this is portrayed in the book is harrowing as Kay battles guilt and fear as well as grief and desperation.
I have no doubt that this book presents a challenge to anyone who reads it but I don't think Kay is looking for judgements or forgiveness, but simply to air the story which is mirrored in darkened rooms all over the world where sufferers lie in pain. Extreme cases of the disease thankfully are rare but they exist, and they present medical challenges that push boundaries to their limits.
At the inquest it was reported that Lynn had "dorsal root ganglionitis" which are tombs of dead infected cells in her spinal cord. These would have given her so much pain. It's a long way from yuppie flu.
I picked tropical flowers for Lynn on my holiday and I placed them in the ocean and watched as they floated out to sea. I know she is free from all her pain now, but her mum will never find peace for I am sure her nights are far from calm re-visiting events and lost dreams. I thought I would judge her but I didn't. I just know that the way this book is written is all for Lynn and the many who suffer as she did.
Summary: I recommend this book to anyone with an interest in this disease.
This review was previously published on Dooyoo under my user name Machair1.