‘It must have been hell on earth.’ ME Essential review of Kay Gilderdale’s book

August 28, 2011

A tragic, emblematic story – but Kay delivers on a solemn promise

 One Last Goodbye – the Lynn Gilderdale story by Kay Gilderdale [Paperback]. Ebury Press (2011), 328 pages, price £6.99.
Also available direct from the ME Association, tel: 01280 818964.

It must have been hell on earth. The anguish of seeing her beloved daughter fade away to the point where she tried to take her own life. Assisting in that as she felt she had no other choice. Feeling that anything else would be a betrayal.

Then the police prosecution. The wait for what turned out to be a sensational trial at Lewes Crown Court. The acquittal on the main charge, that of attempted murder. Being where no loving mother ever wants to be – at the heart of a huge debate about assisted suicide.

Yet, while all this was going on, Kay Gilderdale made a quiet promise to herself. One day, she would tell daughter Lynn’s story so whoever cared to listen or read would know more about the damage that ME can inflict on the body and the huge shaming truth of society’s indifference.

Kay delivers just that damning indictment in “One Last Goodbye: sometimes only a mother’s love can help end the pain”.

“I have decided to carry on campaigning in Lynn’s name to promote awareness of ME and to raise money for research. Research is the key to understanding this illness and Lynn has already made her own contribution”, she writes in the closing chapter.

After Lynn died at the age of 31, 17 years into an illness which left her paralysed and unable to speak, a pathologist who specialized in ME discovered ‘dorsal root ganglionitis’ – infected nerve roots – and nodules of Nageotte, little tombs of dead cells, in her spinal cord.

“These could have caused her terrible pain and sensory nerve damage. They found similar cells in the body of Sophia Mirza, an ME sufferers who died in 2005 at the age of 32, and I believe in other sufferers.

“She knew the evidence would be there to be found. ‘The answers are within me, Mum,” she used to say to me wistfully. ‘It will be too late for me but it will help others.”

“I hope she was right and that some good will come out out of her death and others will not have to suffer the way she did.”

The book is well-­paced with journalistic and dramatic flourishes. I read it in three sittings and I’m no speed-­reader.

Poignant memories of joyful times and photos from the family albums jostle with stories about the hideous indignities heaped on Lynn by a health service just not designed to provide effective support or respite care. There are exceptions, of course, and one was the blessed Dr Woodgate, the family GP.

The original text of Lynn’s very private farewell letter to her internet friends came as something as a revelation. When I originally saw the text in the papers after it had been read out in court by Kay’s barrister Fiona Horlick, it had been polished up into Queen’s English.

In fact, it was tapped up laboriously by Lynn over many months on a hand-­held device. She couldn’t sit up to type into a proper computer.

“I’m just tired… my body is tired, and my spirit is broken. I’ve had enough – can u understand that? I hope u can, I really, really do”, she wrote.

The book restores that memory. And the tears are welling up again.

This review first appeared in the Summer 2011 issue of the ME Association's quarterly ME Essential magazine. Permission is given for it to be reproduced elsewhere – providing it is used word-for-word and acknowledgement is made of the source.

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