Oliver Sacks’ The Disembodied Lady

Another book I’m reading at the moment is The Man Who Mistook His Wife For A Hat. This is a fascinating account of tales of neurology.

Last night I was reading the tale of a woman who suddenly lost all feeling in her body, losing “proprioception”, so she could only control eg her arms, legs or even posture by looking visually and learning to focus really hard and without all the usual instinctive cues to help. This was devastating, but I was also struck by the initial description of her losing sensation in her limbs, and them going out of control, flailing around widely.

I have a 1 in a million progressive neurological disease, primary cerebral vasculitis, in a form very similar to multiple sclerosis. Feeling my limbs go out of control is a common sensation, going fuzzy, often like bubble wrap, or just very wooden and incredibly stiff. It is also more of a problem now, as my disease progresses more, and I rely even more on my two sticks and wheelchair. The account in the book struck so many similarities for me. I just wish I understood it all more.

I wish I could get more information about this from a neurologist. But I had a bad experience the time I did see a neurologist. I also know many other cerebral vasculitis patients who have had poor care from them, with neurologists often having a tendency to under treat this condition, even if they recognise the disease process. This can even in worst cases lead to death. I also know of multiple other vasculitis patients who have had a bad experience with neurologists at my local hospital. Rheumatologists are often a better bet for patients.

But yes, a fascinating book. And a recommended read.

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Accordion arrangement of Ukraine national anthem

I’ve been working on an arrangement of this lovely tune for my accordion. Recording now up on SoundCloud with a link there to the sheet music PDF on my website. My neurological illness hands weren’t cooperating very well this afternoon but I managed to record it. Lovely tune.

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Thoughts on World Book Day, childhood reading and having done a PhD on reading habits

Today is World Book Day 2022, a celebration of reading in the UK and Ireland, targeted especially at children and young people. It is a day for celebrating the power of reading, but also for showing youngsters how they can access it and benefit from it. And I am a big fan.

I was an enthusiastic childhood reader, with early visits to Melrose public library, and still remember borrowing Enid Blyton books and Tudor history. Then when we moved back to Hawick I devoured first the children’s basement floor of the Hawick public library – a grand Carnegie library with lovely architecture – and then was allowed to borrow from the “grown ups” section. There I devoured masses of Agatha Christie books, science fiction and fantasy, as well as doing research into my family history in the research part of the library. I also borrowed books from primary school and secondary school libraries, and the Wilton church Sunday School small library.

Years on reading is much harder for me, thanks to a progressive neurological disease that struck in 1994 when I was just 22. Soon I could no longer easily manage print for extended periods, even large print was troublesome. But then eBooks came along, which I could adjust to have a quite ginormous font, and I was reading again. I adore reading, and on my Kindle usually have a couple of novels on the go, as well as various non fiction books. All read with a gargantuan font that lets me keep reading. I pick up a lot of bargain eBooks in sales, and also read free ones from Project Gutenberg.

However World Book Day has a special significance for me now because between 2003 and 2010 I completed a part time PhD at Dundee University on Scottish reading habits between circa 1750 and 1820. This was a surprising route to take. I’d studied first computer science at university until my illness struck. Then I retrained as a historian. But I was not in any way a literature student.

I worked part time as a research assistant 2003-4 on Bob Harris’s Scottish Small Towns Project, working on the pilot study in Angus. And among other things this introduced me to the history of reading and book history, as I uncovered the history of cultural activity in Angus in the 18th and early 19th centuries, including the spread of libraries, newspapers and bookshops. I discovered that library borrowing records existed rarely in Scotland (though since then more have turned up, all welcome!) and how researchers like Paul Kaufman had showed these could be analysed. And I was entranced.

At the same time I was completing a taught MPhil degree and pondering if I wanted to try for a history PhD. And I couldn’t get away from wanting to research reading habits more. Bob Harris agreed to supervise me, and I started a self funded PhD, though later won funding from AHRC for the rest of my part-time PhD. My approach was very much social and cultural history rather than literary, as I got to grips researching what Scots were reading and how they fitted this into their lives in the late 18th and early 19th centuries. Magic, though with my own reading problems due to illness/disability I was frequently envious of how “my readers” in the past were managing to access books!

My PhD thesis is online and freely available for all to read. In a nutshell though it showed how reading was growing in Scotland in this period, and how important reading was as an activity throughout the country and at all levels of society. A very positive thumbs up for reading.

So whenever World Book Day comes around I think back to my historic research in this field, while at the same time looking forward to my future reading. I am so lucky I got to complete a PhD on this topic. And so grateful I can still read, albeit with considerable adjustments, and a gargantuan font, thankfully helped hugely by adjustable eBooks.

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