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Patient 1: Forgetting and Finding Myself
'Searingly honest and important' RACHEL CLARKEHonest, intelligent and unsentimental, Patient 1 is a startling self-portrait written with wit and vulnerability, and a unique testament to the power of hope in the face of illness.Charlotte Raven had never heard of Huntington's Disease when, in her mid-thirties, she discovered that her father was suffering from the illness. Life for her and her young family would never be the same again.Frank and fearless, this is her memoir of coming to terms with this inherited neurodegenerative disease and its impact on her body, mind and memory. It is at once an act of self-preservation and a kind of with the illness, with the person she once was and with the person she is now. In an afterword, Raven's doctor Ed Wild - one of the country's leading experts in Huntington's - explains how doctors and patients like Charlotte are working together in the hope of one day eliminating this disease altogether.'Insightful, frank and often moving...Raven writes with humour...and no small amount of courage' GuardianShortlisted for the RSL Christopher Bland Prize 2022
206 pages, Kindle Edition
First published November 4, 2021
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About the author
Charlotte Raven
1 bookCharlotte Raven was a British author and journalist. She was named one of the BBC's 100 Women in 2013.
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Displaying 1 - 8 of 8 reviews
November 12, 2022
I always have time for a good medical memoir, but was surprised to find Charlotte Raven (the smart, provocative 90s journalist with the good hair) in this category. I was not aware of her Huntington’s disease diagnosis (the life-limiting neurodegenerative disease) and suspected she was unlikely to turn in a sentimental misery memoir, and she very much did not!
“Patient 1” was a challenging read, in a good way. By her own account, Raven is not an easy person to spend time with. She embraces the memoir form’s licence (requirement, even) for honesty, meaning we are witness to her unflinching, searching laser-focus on herself - as well as a revealing account of what it must be like to orbit a sufferer as a friend or family member.
The book is Raven’s reconciling of who she was - someone with a very fully-formed, distinct identity - with who the disease has made her. To get there, she passes through a gooey, uncertain phase, like caterpillars who dissolve in their chrysalis before re-establishing themselves in a new form. Contrary to the Huntington’s narrative, it seems clear that Raven has retained some important aspects of her identity and, arguably, has acquired a greater ability to empathise (a trait that Huntington’s often erodes) and look outward. She jokes that as a former narcissist, there is a certain irony to the fact that friends and family could sometimes not confidently draw a line between the old self-involved Raven and the disease-afflicted Raven. But one gets the impression that the disease has not only taken from her. I rather like the Raven that concludes this book.
So, although Raven ends the book by stating that, “No one has triumphed over personal adversity. No one has learned a lesson” I got the impression she was being too hard on herself. The book seems evidence of personal growth even as she faces the worst life has to offer. It is worth adding that she has also produced a useful, informative and entertaining book.
An afterword by one of the leading Huntington’s experts offers a moving, interesting picture of the scientific community’s tenacious search for treatments/cures.
“Patient 1” was a challenging read, in a good way. By her own account, Raven is not an easy person to spend time with. She embraces the memoir form’s licence (requirement, even) for honesty, meaning we are witness to her unflinching, searching laser-focus on herself - as well as a revealing account of what it must be like to orbit a sufferer as a friend or family member.
The book is Raven’s reconciling of who she was - someone with a very fully-formed, distinct identity - with who the disease has made her. To get there, she passes through a gooey, uncertain phase, like caterpillars who dissolve in their chrysalis before re-establishing themselves in a new form. Contrary to the Huntington’s narrative, it seems clear that Raven has retained some important aspects of her identity and, arguably, has acquired a greater ability to empathise (a trait that Huntington’s often erodes) and look outward. She jokes that as a former narcissist, there is a certain irony to the fact that friends and family could sometimes not confidently draw a line between the old self-involved Raven and the disease-afflicted Raven. But one gets the impression that the disease has not only taken from her. I rather like the Raven that concludes this book.
So, although Raven ends the book by stating that, “No one has triumphed over personal adversity. No one has learned a lesson” I got the impression she was being too hard on herself. The book seems evidence of personal growth even as she faces the worst life has to offer. It is worth adding that she has also produced a useful, informative and entertaining book.
An afterword by one of the leading Huntington’s experts offers a moving, interesting picture of the scientific community’s tenacious search for treatments/cures.
March 24, 2025
Memoirs are one of my preferred genres.
I 'discovered' Charlotte Raven via her obituary (so very late in the piece) and then read her story.
Subtitled Forgetting and finding myself.
This book delves into her devastating diagnosis of Huntington's disease (HD), a form of dementia., which she inherited from her father.
Charlotte comes across as a difficult personality and quite narcissistic.
An intellectual who helped found a feminist journal/magazine.
Charlotte was a lover of the finer things, including expensive designer fashion, but she had a poor capacity to budget, resorting to getting her father to pay for things. Despite being an avowed feminist she does come across as daddy's little girl.
This book is written by Charlotte Raven with her brother Daniel Raven, who assists to pull the whole thing together.
What struck me is that Charlotte was very disorganised before she was diagnosed with HD. Unable to keep at things in school and then journalism. She had an inherent ability to lose focus and concentration, who knows perhaps she would have been diagnosed with ADHD?
The cover art is very basic and the book cries out for more photos.
Perhaps a more pictorial version of Charlotte will find its way into the public domain one day.
I 'discovered' Charlotte Raven via her obituary (so very late in the piece) and then read her story.
Subtitled Forgetting and finding myself.
This book delves into her devastating diagnosis of Huntington's disease (HD), a form of dementia., which she inherited from her father.
Charlotte comes across as a difficult personality and quite narcissistic.
An intellectual who helped found a feminist journal/magazine.
Charlotte was a lover of the finer things, including expensive designer fashion, but she had a poor capacity to budget, resorting to getting her father to pay for things. Despite being an avowed feminist she does come across as daddy's little girl.
This book is written by Charlotte Raven with her brother Daniel Raven, who assists to pull the whole thing together.
What struck me is that Charlotte was very disorganised before she was diagnosed with HD. Unable to keep at things in school and then journalism. She had an inherent ability to lose focus and concentration, who knows perhaps she would have been diagnosed with ADHD?
The cover art is very basic and the book cries out for more photos.
Perhaps a more pictorial version of Charlotte will find its way into the public domain one day.
June 13, 2022
Recomendo a toda a gente para que fiquem a conhecer a doença de Huntington, o que faz e como debilita quem dela sofre e quem os rodeia num registo bastante fácil de ler e interessante.
Especialmente ler o capítulo final de epílogo onde temos um pequeno resumo da doença feita pelo médico que acompanha a escritora.
Especialmente ler o capítulo final de epílogo onde temos um pequeno resumo da doença feita pelo médico que acompanha a escritora.
November 10, 2021
Tears. Great insight into the horrible disease and good background for my book.
December 31, 2021
A riveting account of an early onset debilitating terminal illness and its impact on her self and her family.
February 20, 2022
An honest memoire on a difficult condition.
June 22, 2022
Incredible account from someone with Huntington's disease. Highly recommend this avenue of learning more about a devastating disease.
August 31, 2024
Disease, existentialism and honesty. Tough but real and always full of spirit.
Update- I still think of this book every second day
Update- I still think of this book every second day
Displaying 1 - 8 of 8 reviews