Kevin Weller – Trapped but happy

Kevin Weller was left locked-in after a severe stroke when he was 32 years old. In a short article for the Guardian, told to a journalist by winking to an alphabet board, he briefly explains the fear when he first awoke in ITU, all the greater when he realised that no-one could understand him.

Against the odds and with the support of his family, Kevin went home over 20 years ago. He has a respirator and is fed through a tube. But he clearly communicates in this interview that he is happy, and has every wish to stay alive, looking … Read more...

Bonnie Sherr Klein – Stroke Memoirs

Who better to talk about the possible benefits of “patients’ memoirs”, and in particular, stroke memoirs, than someone who has experienced severe stroke, locked-in syndrome, paralysis, and respiratory failure? Bonnie Sherr Klein reviews Julia Fox Garrison’s account of a stroke, and in the process claims the ground for the survivor’s voice, fighting against the one-size-fits-all approach. “Listen to me. I am the expert about my own body.” This, she says, is the response of so many stroke survivors.

She refers to the profound differences between the USA and Canadian health and rehabilitation systems. She talks of the physical and social … Read more...

Matt Haig – Reasons to Stay Alive

Matt Haig’s book about his experience of depression is the one I would recommend to any younger person with a depressive illness. (Depressive-suicide is the biggest killer of young men in this age-group.) There are a number of reasons for my opinion. It is constructed in a short chapter format, in approachable prose that makes it easy to read, to put down and to pick up again. It uses vivid metaphors and images that communicate a difficult subject clearly. For example, the image of the ‘bank of bad days’ spoke strongly to me – bad days that have been survived … Read more...

Adrian Owen – How science found a way to help coma patients communicate

This article (or podcast) refers to one particular patient encountered by Adrian Owen in his investigations with people in coma. It is a short and very moving account of how clinicians used fMRI to enable a 38 year-old man in deep coma to communicate with the people caring for him. By imagining how to play tennis at particular moments Scott Routley was able to signal (either yes or no according to how the question was framed) by firing up his prefrontal cortex on the fMRI image, even though to neutral observers he seemed to be still deep in his … Read more...

Claire Lomas – Finding My Feet

Claire Lomas is a one-woman whirlwind, and her story is not altogether typical of what happens after spinal cord injury. The book may not be the best written (or edited) of all the accounts reviewed on this website, but it is one of the most authentic. Claire gives us her unadulterated story as she sees it, with no worries about using non-PC language, or squeamishness about bladder and bowel incidents, and no holding back in her criticisms of clinicians encountered along her journey. (I use her comments about the one-size-fits-all approach at the spinal injury unit she attended for discussions … Read more...

Andrea Gillies – Keeper

Andrea Gillies has told the story of how she and her husband watched his mother Nancy’s decline into dementia. It is a moving and upsetting narrative, which cannot fail to arouse in our imaginations the possible scenarios of our own last days, or how we might fare as carers for elderly relatives. Nancy and her disabled husband Morris come from Edinburgh to stay with Andrea and Chris and their three children in a large Victorian house on a remote peninsula in north Scotland. Chris and Andrea ‘thought that if we took her into our home that we would be able … Read more...

Cathy Rentzenbrink – The Last Act of Love

A fate worse than death. And life was never the same again – although there was a strong sense of another alternative life somewhere else. Cathy Renzenbrink tells us that she sometimes imagines the parallel universe where her brother’s accident never happened and he grew up to be a brain surgeon and fathered her nieces and nephews. This riveting book tells how she and her parents (and many others) had to struggle through an impossible situation. Her brother was knocked over by a car, and although the subsequent emergency surgery prevented his death, it (and consequent epileptic fits) left him … Read more...

Daniel Tammet – Born on a Blue Day

What is autism and so-called ‘autistic spectrum disorder’? It is a question that is difficult to ask of many people with autism because of their acute linguistic and communication difficulties. On the other hand, will we get a useful answer by asking atypical individuals with ‘high functioning autism’ like Daniel Tammet, John Elder Robison and Temple Grandin, who are not only independent but able to write books and communicate about their perspective? Are their views representative of this group in society?

Daniel Tammet is on many measures an exceptional individual. He is a savant with exceptional numerical and memory skills. … Read more...

Douglas Ritchie – Stroke: A Diary of Recovery

Although this account was written over 50 years ago, and includes some items that are culturally removed from today’s clinicians (like London buses with open platforms), Douglas Ritchie’s book about his stroke and aphasia still has much to offer. He had a stroke in May 1955, starting a diary in 1956, and beginning to write for this book in March 1957. The book’s first edition ended with a chapter summarising the progress seen at 4 years, but the second edition has an additional chapter, ‘Ten Years After’ written in May 1965.

The original stroke left Ritchie with a right-sided paralysis, … Read more...

Stuart Sutherland – Breakdown

The first (shorter) half of this book is a riveting account of the author’s depressive episode, his anxiety and his manic depression, whereas the second half is a more conventional discussion (from his experience as a psychologist) of the therapies available, including the background, speaking therapies and drugs. Originally written in 1974 (about 3 years after the first episode), the account is supplemented by updates in 1987 and 1997, giving the reader a perspective which was obviously not available to Sutherland when he wrote his first account, while also giving the immediacy of the original version. Sexual jealousy of his … Read more...