How do you perceive the world?

Everyone experiences reality in a slightly different way – but unless we describe those experiences in great detail, the differences between them go undetected. Biologist Mia Tomova has described in detail how her visual imagination seems lacking compared to that of others, a condition that is called aphantasia. She is unable to construct images of things in her mind’s eye. It is hard to know what other people see in their mind’s eye, just as it is hard to know if you see the same blues as I see when we look at the sky. Mia is probably correct … Read more...

John Spence – I couldn’t read until I was 34

For John Spence, a soldier, it was easier to come out to his comrades about his homosexuality than it was to tell them that he couldn’t read. That says a lot about the social stigma about illiteracy, and about John’s shame and embarrassment.

This short article gives an inkling of how neurological conditions like Irlen syndrome are under diagnosed and how this can have huge long-term consequences. In someone with Irlen syndrome, misprocessing of visual information causes apparent optical distortions, and letters seem to move on the page when the person tries to read. As a lecturer I was lucky … Read more...

Robin Morgan – No Signs of Struggle

Robin Morgan is a poet, and she happens to have Parkinson’s Disease.

In her poem ‘No Signs of Struggle’ she describes how PD causes many aspects of life to get smaller – posture, gesture, speed of movement, handwriting, even facial expression. She feels it, and she sees it in her clinic companions.

But her poem also expresses a sense of something beautiful: because someone with Parkinson’s Disease needs to concentrate so intently to achieve each and every movement that was previously automatic, and this in turn entails a mindful being in the present which was previously impossible in the daily … Read more...

Barbara Lipska – The Neuroscientist Who Lost Her Mind

Barbara Lipska’s experience presents a problem, and her memoir attempts a partial solution. For how can you remember what it is like to be not yourself? If you are not there to associate events and their emotional import, how can you recollect and describe them?

Lipska became ‘mad’ (her description) as a consequence of metastatic tumours growing in her brain secondary to a melanoma. She exhibited many of the signs of schizophrenia and dementia, conditions she had spent her career as a neuroscientist trying to understand. And yet, during the period she experienced these signs, she lost the very part … Read more...

Abraham Verghese – Soundings

Clinical work often involves intense interactions with patients and their carers, and sometimes this can be very draining. Coming to terms with the nature of care, and negotiating the balance between the demands of home and a clinical calling is a complex process which is not easily described. In every situation, and for every individual, there will be different choices and accommodations. Abraham Verghese gave an unforgettable account of his struggles with these choices in Soundings, his first book, published in 1994.

In America Soundings was published as My Own Country, but a more direct description of its … Read more...

John Launer – How Not to be a Doctor

John Launer is a GP and medical educator. The fifty entertaining and stimulating essays collected in How Not to be a Doctor were all first published in the Postgraduate Medical Journal and the Quarterly Journal of Medicine. They are well worth dipping into.

Launer is a passionate advocate of the importance of patient stories. This means not just careful listening and interpretation of stories for clinical and diagnostic purposes, but also enabling patients to construct stories to make sense of their lives.

There are several essays about important questions for doctors to ask in the consultation process. He gives … Read more...

Lance Armstrong – It’s Not About the Bike: My Journey Back to Life

Perhaps I read Lance Armstrong’s memoir too late. Or perhaps I read it in a position of knowledge. At least for me It’s Not About the Bike will never be tarnished – as it has been for some people I know – by the subsequent drug furore, and the trashing of Armstrong’s reputation. This book remains a very moving memoir of cancer diagnosis, of surgery and chemotherapy, and the struggle to recover some kind of equilibrium afterwards. At the point of diagnosis, knowledge was the very thing that was lacking – any knowledge about the condition Armstrong had, his chances … Read more...

Authenticity

I’ve been reading Lance Armstrong’s memoir, It’s Not About the Bike – the one he wrote before the drug-controversies, before David Walsh and the Sunday Times campaign, before the confession on Oprah, before the Tour de France victories were removed from the record books… It’s the memoir that tells the story of his fight against testicular cancer, and his subsequent return to health and cycling.
And it raises an issue about authenticity. Does it matter if an illness narrative is slightly stage-managed? Does it matter if the events were not quite as they are presented? Or if the lessons for … Read more...

Wendy Mitchell – Somebody I Used To Know

This is a fantastic book. Somebody I used to know might be called a memoir by someone whose memory is deserting her. It is a priceless exploration of a world that might become relevant to any of us. It describes Wendy Mitchell’s life and experiences, with conversations between her old and new selves. It teems with tips on how to live with dementia, from the point of view of someone who is living with dementia. There are moving descriptions of the areas of difficulty, including talks with Wendy’s daughters about care and end-of-life decisions necessary for before they can sign … Read more...