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I’ve been reading a book about a stroke survivor, a neurologist actually. His stroke was really catastrophic, so different what I’ve experienced from my cerebral vasculitis since 1994. But there are so many shared experiences.

For example late on in his rehabilitation he would often get stuck, knowing what he wanted to do, but needing encouragement to do it. So eg sitting on the edge of the bed, but unable to stand up without encouragement. That is so familiar to me. Often I just ask my husband to encourage me to do something, like stand, or move my leg etc. I’ll typically say “I’m stuck. Help!” Often it happens when we get home from an outing, and it’s an almighty mind over matter effort to encourage me to move my legs out of the car, get up, and walk into the house, carefully. I could just vegetate there indefinitely on the spot.

Anyway an interesting book for me. I have had lots of mini strokes, and a bigger one in 2004. But I’ve had no neurology support re understanding what is going on with me, or for recovery or rehabilitation. So I battle on! But I wish I understood more about it.

The book is Surviving Stroke: The Story of a Neurologist and His Family by Helen Kennerley and Udo Kischka.

I was hoping to see some of this year’s online NarraScope interactive fiction conference in July. But I’ve just found out that it’s running on Gather this year, a meeting/conference system based largely on a virtual model of a conference area in the computer, top-down old-style graphics with little person avatars etc. Which all sounds fine and dandy, but I’ve known people struggle with it at large events. And for disability reasons I don’t think I could manage it successfully. It can also work very poorly sometimes on mobile devices, and I would be tuning in from bed. Luckily the talks will be recorded for later viewing, speaker permissions allowing. But I’m not signing up to attend this live. I have voiced my concerns about this software to the organisers, but it would be too late to change their plans now. Interactive fiction has a very large number of disabled users, many of whom might struggle to use Gather, for different reasons eg blind or partially sighted, hand control problems, cognitive issues re processing lots of info etc.

Gather meeting software in action

I’ve my 5th Covid vaccine coming up this week. 5th vaccine because I am eligible for the Spring Booster because I am severely immunosuppressed. Previously I had the usual first two Covid vaccines, then a special bonus 3rd primary because I’m severely immunosuppressed, then my first booster just after Christmas.

It is very likely – well almost certain – I will flare neurologically again after Covid vaccine #5. I have after the previous four Covid vaccines. If so that will probably wipe me out almost totally for another three months, starting about a week after my vaccine this week.

So this is probably my last week of a bit of respite – a bit because I am often waking up late afternoon even in this brief respite phase since the start of April after my symptoms finally eased after my 4th Covid vaccine in December.

I may seem bonkers putting myself through this repeatedly with the vaccines. But they could save my life. My medics and I are agreed that I should keep getting vaccinated. My neurological flares I can recover from, even if it takes three months each time. It is also very likely I will get a 6th Covid vaccine in the autumn …

In no way is this an anti vaccination post. Vaccines save lives, and especially people like me who are severely immunosuppressed. I had a very poor vaccine response to the first two vaccines, but my bonus 3rd one (a special pre booster one needed because I’m severely immunosuppressed) gave me a healthy dose of antibodies, which could save my life. My first booster then extended that protection. Many severely immunosuppressed people have not had such a good response, despite loads of vaccines.

But the Covid vaccines take a terrible toll on me, because my auto immune neurological disease cerebral vasculitis is in my case so unstable. Each time I have a Covid vaccine I have three months of dramatically increased bladder incontinence, crippling headaches, sleeping up to 18 hours a day and phenomenal sedation even when awake, and appalling arm and leg control. It is amazing that I am not raging about this more. In my old consultant’s words I’m just too “phlegmatic”, which I eventually realised was a bit of a compliment!

I can access antiviral treatment if I catch Covid. I can also still access free testing to help me get treatment in time. What would really help though is to have the Evusheld preventative antibody treatment, which is designed to prevent severely immunosuppressed people like me catching Covid in the first place. But the UK government hasn’t bought any Evusheld yet, unlike just about every other comparable country.

Just don’t anyone say to me we are living with Covid, or even worse Covid is over, as a dental hygienist said to me the other week. I am getting through the pandemic, but at a terrible cost in terms of how the vaccines affect me. No way is it over for me, and many other people like me.

I’ve been taking part in an interesting Twitter thread today about problems faced by non affiliated or barely affiliated academics, essentially independent scholars without university support, including financial. It digressed slightly into different funding arrangements for postgraduates. I remembered how during my Dundee history PhD (2003-2010) many Scotland-wide PhD training events were for a long time only open to funded PhD students. I was initially unfunded for my history PhD, but later won AHRC funding. Even then as a part timer I got no stipend, unlike full timers. My PhD supervisor campaigned with others to get AHRC to provide stipends to part timers. This happened in time for me to benefit before the end of my PhD. As a part timer I was also initially ineligible for the Disabled Students Allowance, which at that time could only go to full timers. Fortunately that changed too. To be fair this is a long time ago, and much has changed. But still.

I could also go off on one about the poor support for me as a computer science PhD student from EPSRC when I fell long term ill. But that’s another story …

Living with Covid

Much of the current political discourse, especially in England, is about how Covid isn’t a problem any more, something we can live with. This is accompanied by removal of testing, so people will have Covid but not know. Likewise mask wearing isn’t being enforced, and many people stopped long ago. Note wearing a mask primarily protects others, not you, including the clinically extremely vulnerable you aren’t aware of just by looking at them. And this is all supposedly ok.

I’m one of those at greatest risk from Covid, being severely immunosuppressed for life, due to treatment controlling my incurable neurological disease and keeping me alive. I have been told very clearly by my medics that Covid could kill me and I must avoid catching it.

The first two Covid vaccines left me with very little protection against the vaccine. I am very lucky to have finally after my 3rd primary vaccine (an extra bonus vaccine given to the severely immunosuppressed in the UK) developed a good number of antibodies. But Covid could still potentially kill me, and I still need to avoid it.

I have been stuck in the house for two years, partly due to the risks out there, partly as my neurological disease rages. Both during the official shielding periods when I was advised by the NHS to shield, and after. The inequalities of so-called “living with Covid” are immense. It isn’t safe for me to go into a dining environment or coffee shop, or a general shop, or anywhere where people may be unmasked. Nor can I easily meet family or friends.

Yet even vaccines that may save my life have a high price. My unstable life threatening neurological disease has flared after all four past Covid vaccines. It takes me three months each time to recover. I have just about recovered from the December jab 4. I have jab 5 (Spring Booster) due any time now, which will almost certainly cause me to flare for another three months. But my medics and I are all agreed I need these vaccines.

It is no wonder I am so bitter at politicians and some of the public blithely dismissing Covid as a threat. If you haven’t lived in the shoes of someone extremely vulnerable, especially severely immunosuppressed, you can’t grasp what we’re facing, and why the risks are so high for us, especially now. In the last few weeks I have known many friends and clinically extremely vulnerable catch Covid. One friend with zero antibodies from four vaccines is fighting it now. The dangers to us are huge, but according to many politicians and the public it is just fine.

This post was prompted by a blog post from fellow academic Martin Paul Eve. He has even lower protection from the vaccines than me, and describes the situation he finds himself in eloquently.

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.

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.

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.

I’ve played the accordion for 45 years, since age 4. But I haven’t been able to play it so much for the last 27 years, since my progressive neurological disease struck at age 22. But I do still play as I can, and it still gives me much pleasure. I’ve blogged here before about how I recently started arranging music for the accordion, using computer sheet music notation software.

One of the drawbacks of only playing intermittently is that it can be difficult to practice pieces enough, or to improve technique. But this year I want to make a conscious effort to work on my technique, using some of the Palmer-Hughes series of accordion tuition books. This is a series of books that gradually teaches accordion technique, increasing in difficulty as the series progresses. At the moment I am at roughly book 5 playing level in the Palmer-Hughes series. However there are skills developed in book 4 that I need to improve, and I hope to move ultimately on to book 6. So my plan is to carefully and systematically work through books 4, 5 and 6, allowing sufficient time for each tune/exercise, and repeating often enough to improve and consolidate my playing technique. When I got copies of the Palmer-Hughes books 4, 5 and 6 I was pleased to see that the tunes used for exercises are nicely arranged and fun to play, so this should be an enjoyable experience, as well as a useful exercise.

Photo of Palmer-Hughes Accordion Course books 4, 5 and 6

I’ve also bought a metronome, a wind-up mechanical one, very traditional in design, but unusually compact. I have a tendency in my playing to play erratically, playing easier parts faster and harder parts slower! The metronome should help me find a more regular tempo, not just in my music exercises, but also in my own arrangements.

The other recent purchase that will help a lot is a more compact second accordion that I bought over the Christmas period. This 48-bass German model is extremely lightweight, and will be easier for me to play sometimes when I’m weaker. It doesn’t have as wide a range of notes as my Italian 72-bass accordion that I’ve had since 1981. In particular it can’t play B chords or treble notes lower than bottom B. So it is a compromise. But it can play most of my tunes, including most of the exercises in the Palmer-Hughes books 4, 5 and 6 I am focusing on next.

So yes, fun times ahead, and hopefully some improvements in technique, which should also feed into my wider playing.

Photo of blue 45-bass Weltmeister piano accordion
Cover of book being reviewed

I’ve enjoyed gamebooks for many decades. These are a form of fiction where the story offers the reader choices, allowing branching narratives, which you choose by turning to a different numbered section. This form of interactive fiction has a long history, dating back to the early decades of the twentieth century. However it took off in popularity in the 1970s and 1980s, with series such as the US Choose Your Own Adventure books and the UK Fighting Fantasy series.

So it was a delight for me to spend some Christmas money on a fairly recently published gamebook set in the world of the television series Midsomer Murders. This is a UK series that has been airing for decades, featuring police investigating murders in a series of cosy, rural village settings, often with particularly imaginative and setting appropriate methods of death.

In this book you are a detective investigating a crime, which you gradually uncover as you work your way through the story, deciding how to follow up clues, and how to approach questioning members of the public. The writing is strong, getting on with things, and cramming a remarkable amount of content into 219 main sections. I didn’t feel at all short changed, and was immersed in the mysteries I was uncovering. The local characters you encounter are deftly described. And, pleasingly, the various methods of murder include some that are utterly bizarre, and yet so fitting, in true Midsomer Murders style.

On the downside for replay purposes the story and core plot of the crimes in it are fixed, and won’t change on rereads. But there are many varied elements, only some of which you would uncover on each read through. So replays can be fun, exploring changes to the choices made, and pursuing different lines of enquiry.

Even surviving the gamebook can be an achievement for you playing as the police officer investigating, with many opportunities for you to fall victim to the criminal or criminals involved. The book has 30 different endings, to varying degrees of success. In addition there is a really neat section at the back of the book where each ending is given a more objective assessment of success or not. These assessments are grouped together, and it is almost impossible not to peek at some of the others, which isn’t so much spoilery as motivational, making you want to replay the book and experience other endings.

Overall the gamebook is a fun and original take on the cosy whodunnit world of Midsomer Murders, and I would recommend it to any fans of the TV series, or indeed gamebook fans looking for something a bit different.

Could You Survive Midsomer? is written by Simon Brew and published by Cassell. The book is an attractively designed hardback, 304 pages long, and includes a number of illustrations, nicely drawn additions to the story in the text.