Reading a book about a stroke survivor and recognising so many things

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.

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Recording a talk about a Dandie Dinmont Terrier breeder ancestor

I was asked a couple of years ago if I’d speak at an event in the Scottish Borders about my ancestor who was a pioneering breeder of Dandie Dinmont Terrier dogs. The event was going to include a walk around Kelso, seeing some of the places associated with my ancestor.

Sadly due to the Covid pandemic the 2020 event was postponed. And then by the time of the 2021 event it was (1) still too risky for immunosuppressed me to attend, and (2) not feasible anyway because of how much my progressive neurological disease had worsened.

Amazingly the event went ahead, despite the ongoing pandemic situation. Events covered three days, at the Haining near Selkirk, Abbotsford near Melrose (little Dandie Dinmont dogs racing!), and Oxnam and Kelso.

I’d recorded a talk about my ancestor and this was part of today’s Kelso events. I put together the slides in PowerPoint on my iPad, working on keeping it tightly focused, while having interesting illustrations. I found it really interesting combining the family history with the breed history. I’ve given a lot of academic talks, but never one quite like this before! Then I recorded it on my Mac laptop using a lapel mic, which worked really well. Luckily I was able to record the 12 minute talk in one go, which was fortunate given how weak I am now.

Here is the YouTube version of the talk. Subtitles are available if required.

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Language learning with a memory affecting neurological disease

I recently resumed learning Scots Gaelic and Russian. I’ve been studying the former intermittently since 1990. Russian is a more recent project. Both are self study, using text books. And both have to fit around my fluctuating health.

I was very good at French at school, and picked up dozens of computer programming languages before my progressive neurological disease struck at age 22. Among many other symptoms it significantly affects my memory, and increasingly so, far more than would be expected in someone my age.

Memorising vocabulary and grammar rules is very hard for me, though Gaelic seems to “click” better in this respect. I don’t find conversational learning approaches work well for me – I forget things too quickly, and am happier learning the written language and grammar. It’s also why Duolingo and me aren’t the best match. I need to be able to refer back visually to words and grammar to remember them. A grammar-based approach also fits well with my goal of learning to read, above all, the two languages. Not to speak them so much.

Russian is more of a challenge, unsurprisingly, given its dramatically different alphabet, making words very unfamiliar visually. There’s definitely more of a hurdle to overcome. Again I’m finding the grammar approach works best for me, though it does get hard very quickly! But I do make the best progress with this.

The biggest challenge practically with the Russian learning in particular is I need to sustain the momentum of my learning, and keep it moving forwards in a cumulative way. That gives me the best hope of dealing with my language memory problems. But it isn’t something I’ve been able to do for over a year, as my neurological disease was badly out of control throughout 2020. I’m doing better now though, after a belated adjustment of my daily drug doses.

So fingers crossed! I have my tuition books ready, and hope to make sustained forward progress. I’m definitely still more confident about the Gaelic than the Russian. But I can see forward progress in the latter too, and it’s fun.

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Recalling some early successes in a progressive disease

I was commmenting on a vasculitis support group post a little while ago, and it reminded me of some of the early symptoms I had from my brain form of vasculitis that did respond well to treatment. I fell ill in autumn 1994, and wasn’t diagnosed properly till late 1997. So I couldn’t start life saving treatment for years. Fortunately when I did start that treatment some symptoms responded well to it. For example I had significant visual and hearing symptoms early on, caused by problems in my brain, not in the eyes or ear. I was battling with slowed-down tunnel vision, and constantly seeing black spiders and wavy lines. Strip lighting gave me headaches. I also constantly saw smoke and often thought our Cupar flat was on fire! With hearing I was very overwhelmed with any noise, and would get extremely tired listening, and need everything quiet. Using the phone was extremely difficult, and also chatting in any room with other conversations around, even quiet ones. Fortunately once I started strong chemo and immunosuppression treatment the hearing and vision problems improved, though never went away entirely, but became more manageable. Sadly other symptoms didn’t respond so well, and my disease has been slowly progressive. But it’s nice to recall some things that did improve.

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Ten years since PhD viva

March 31st 2020 will mark exactly ten years since my successful history PhD viva. I thought it might be nice to reflect on how the subsequent years have gone, and where things stand now for me, in academic terms.

I live with a severely disabling neurological disease, which struck in 1994 when I was just 22. It’s gradually progressive, and prevents me from working in any paid capacity in academia or elsewhere, and limits what I can do. The last decade saw me continue to battle a major relapse in my disease, including needing high dose chemotherapy infusions in hospital throughout summer 2012. Fortunately this treatment helped stabilise my condition, although it is still progressive.

Nevertheless I have continued to be active as an academic, publishing new peer reviewed journal papers and book chapters, and presenting conference papers and participating in other ways.

In the early stages post PhD my primary focus was on publishing work from my PhD thesis. Increasingly I have moved onto new research and new topics, and have a number of interesting new research projects underway.

An unexpected more recent change of tack saw me switch from my usual eighteenth century interests to jump back into the seventeenth century. My pre-PhD MPhil (taught PG Masters) dissertation studied a rich set of seventeenth century Scottish local court records, and I felt strongly that these merited publication as well as my later PhD research. In addition I discovered a poem about the court in 1682 – written then too! I have an annotated transcript and accompanying essay about the poem due to be published soon. This might sound straightforward, but the seventeenth century context is far outside my comfort zone as a historian. Yet I have derived much pleasure working in it, and learning the historiographical ropes. Encouragingly I also think there could be more publishable outputs possible from this MPhil dissertation research.

I have also combined my historical interests with indie computer game development, specifically traditional text adventure games, or interactive fiction as they are more commonly known nowadays. Two games have been entered into competitions, one about Border Reivers in 1490s Liddesdale, the other an occult treasure hunt in 1590s Scotland based on a true story in my family history. I plan to write more in future. It’s a creative hobby that gives me much pleasure.

Another area I would like to explore more is digital humanities. I’ve always used large scale computer techniques in my historical research, probably inevitable given my previous background as an academic computer scientist. Yet I would like to do more, for example building online portals to some of the databases and resources I have built in my research, and using spatial analysis and visualisation to further explore Scottish book history and urban history.

One thing that has declined over the last decade is my participation in academic conferences. This has had a strong correlation with my neurological disease progression, and the increasing practical challenges of attending conferences given these circumstances. However I do still occasionally speak at conferences, or attend. I was due to speak at a conference in May, but then Coronavirus happened. Hopefully the event is just postponed, rather than cancelled.

Something else that has declined over the last decade is how frequently I have been able to attend Dundee University history research seminars for the university’s history academic staff and postgraduates in particular. There are various reasons for this, but my progressive disease is definitely a major factor. I was delighted recently when I managed to attend a history seminar, the first in a very long time. Many familiar faces to see and catch up with, as well as new folks to meet. Yet even largely home based I don’t feel completely cut off as an academic historian. Twitter is a particular boon, connecting me with fellow academics and historical researchers with shared interests, all over the world. I also have a good number of lecturer friends I can call on for advice if need be. Ever since my PhD I have had an honorary research fellowship in history at Dundee University, which has also been a huge help, and is very much appreciated, giving me ready access to electronic journals and other resources, so vital to allow me to continue to keep up with research in my academic fields.

I don’t know what the next few years are going to bring. But for now I look ahead with optimism, and hope to continue to build on the good progress I have made as an academic historian in the last ten years.

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Missing the freedom of walking

One thing I really miss with my neurological illness is being able to walk around a place and explore. I used to love wandering around St Andrews as an undergraduate, and Hawick and other Borders towns when I was even younger. When the illness started in 1994, when I was just 22, it didn’t stop me walking right away, though there were issues. Walking difficulties have increased over time, especially after my major relapse in 2004.

I now always use two sticks out and about, and can hardly walk any distance. Often I have to use my wheelchair. I have had a Blue Badge since 2001 for good reason. It does mean that when we go on overseas trips I am extremely restricted. I have to sleep most days anyway, but even on other days I need the help of taxis or similar to get any distance away from the hotel. In Venice I had a huge struggle walking to the nearest water bus stop. And when I go back to Hawick I can’t explore as I’d like to. On trips my husband becomes my roving eyes, exploring a city on foot, with digital camera in hand, on the days I have to sleep. That helps me “see” a bit more of a place. But there’s still a great sense of loss. And I know I will never recover this. My disease is progressive.

It’s particularly frustrating for me as an urban historian. So much of my academic research in the last 20 years has been on towns, and town development, especially in the seventeenth, eighteenth and nineteenth centuries. Luckily even with my disability I can make progress with a lot of documentary records – including digitised ones that I can access at home – and old maps and town plans. But there’s no real substitute for exploring a town on foot on the ground.

So yes, it’s sad, but I’m still able to explore my interests intellectually and academically. And life is still rewarding. Albeit not very mobile!

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Reconsidering attending academic conferences for disability reasons

I’ve blogged before about the considerable difficulties I have attending academic conferences now, due to a neurological illness.

I’ve persevered for years with access problems and excessive fatigue meaning that I can only attend often a day at most, or have to do a day at the conference, then a day of solid rest, then another day back at the conference, and so on. But even though my disease is doing better at the moment, I’m now seriously considering whether it will be practical for me to attend academic conferences from now on. This is despite the pleasure that I can get from attending a conference, and the academic stimulation, and benefits of networking etc.

To be fair a lot of conference organisers have been enormously helpful in helping me attend. In particular many have allowed my husband to attend free as my carer, to help me get around, with or without my wheelchair, fetch food etc. But equally I’ve had huge problems. A particularly notorious example was at the SHARP 2016 book history conference at the Bibliotheque Nationale in Paris. Despite assurances in advance, and my confirming repeatedly to organisers which talks I wanted to go to in my wheelchair, the conference organisers scheduled one of my desired panels up a flight of stairs with no lift. A simple human error, yes, but one that caused me considerable difficulties on my sole day at this conference.

Attending international conferences like the Paris one puts particular strains on me. I need to sleep for much of my time there, on alternate days at the very least, so I’m limited in how much I can attend any event. My husband is needed there to help me attend. I don’t have financial support from a university, so we foot the double travel costs ourselves as well as registration fees (my husband usually gets in for free, but I often have to pay a full multi-day conference registration fee, even if only attending on a single day). More worryingly many academic conferences are in university buildings which vary markedly in their accessibility, and, as the Paris example shows, organiser assurances about accessibility aren’t always reliable. And so often it’s just simply not worth the hassle to me.

I don’t want to rule out attending conferences completely, but I think it’s going to be increasingly unlikely that I’ll attend international ones in particular. I had hoped, for example, to attend the SHARP book history conference in Amsterdam in 2020, but for various reasons, largely out of my control, I’m doubtful of doing that now.

But I do still intend to travel overseas. I have travel plans for later this year, but the focus increasingly will be on fun and enjoyment, under my control as much as possible, rather than trying to do something that’s increasingly impractical for me, difficult to manage, and reaps insufficient rewards.

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Celebrating 50 years of the Open University

Wow the Open University is 50 years old today!

This snuck up on me! Fifty years ago, today, the Open University received its Royal Charter. I’m a huge fan, and thought I’d reflect a little on the extra chances the OU gave me. The OU is a much venerated UK university, that set out from the start to support part-time distance learning at home, giving people a chance who might otherwise be unable to study at university level.

The OU gave me a second chance after I dropped out of my science PhD, after falling seriously ill with a MS-like illness at just 22. Once I was finally diagnosed properly and started life saving chemotherapy treatment it made me nauseous and vomit for up to 8 hours every day, every single day, for years. I had to try something to take my mind off it, so started studying part-time with the Open University. The OU support staff thought I was too disabled to study with them by this time, but I tried. When I went to St Andrews University in 1990 I had wanted to study two subjects: Scottish history and computer science. But I could only do one, and was qualified for the latter, so stuck with that. But history – and especially Scottish history – was unfinished business for me. Now was my chance!

My first course in 1998 saw me jump straight in to second year history, and a course on Culture and Belief in Europe 1450-1600. Renaissance history basically. I loved it! It was phenomenally hard. I’d skipped the foundation year that teaches you to write academic essays, and analyse historical sources, and do art history and literature. So I didn’t make things easy for myself. Didn’t get the best course result, because of these circumstances. But oh it was brilliant. It also made me fall in love with Venice, and I went there later that year for the first time.

The next year I studied a course on family and community history. Yes that was good for me, a lifelong genealogist! I was able to use my family history stories in the essays for it. So, for example, I wrote an essay looking at my 3xg-granddad John Usher Somner running a rather posh boarding house in West End Edinburgh in 1871. At the other extreme I analysed the poor relief records for a 4xg-granddad John Hall, in 1860s Hawick, From my husband’s family I did a mini project looking at the extent of interbreeding (yes there was a lot!) in two Suffolk parishes where his ancestors lived. And for my final big end of year project I analysed Coldingham baptismal witnesses.

By this point I was well on my way to a history degree, and with credit transfer from my Computer Science BSc(Hons) I had extra points to shorten the amount I needed to study. But I took a big swerve in my final year, veering towards classical studies, with two courses. The first looked at the Roman Empire, particularly regarding power and identity. That was fascinating. Archaeology, mixed with written sources, visual images of gravestones and stuff, from all over the Roman Empire. I loved that. At the same time I studied a course on Homer’s Iliad and Odyssey, which combined the literary works with the archaeology of Troy. Which I had a family connection with. That 3xg-granddad John Usher Somner was a nephew by marriage of Charles Maclaren, first editor of The Scotsman newspaper, who first pinpointed Hisarlik as the likely location of Troy.

Throughout my OU studies I studied from home, using course materials – published books, course books written by the course team, handouts, etc. – sent to me in regular chunky postal packages. This was supplemented by face to face tutorials, but for much of the 3 years I was too ill to attend those, even the ones nearby in Dundee (I lived in Cupar at this time). I was also too deaf at this time from my neurological disease, so couldn’t chat to a tutor by phone. So I was extremely isolated. But the course materials were almost all superb. The course books, written by the course teams, particularly wowed me. These were written collaboratively, to a very high standard. And were much better quality, in overall terms, than many science lectures I’d attended as an undergraduate student at St Andrews. In addition I had contact with other students through the FirstClass online computer networking system, which made me feel less isolated, and helped build up a community. 20-odd years on, long after the demise of FirstClass, I’m still in touch with OU friends I made then. The OU supported disabled students brilliantly, long before the Disabled Students Allowance started, and long before many other universities made any kind of provision.

I studied with the OU between 1998 and 2000, and by the end of my classical studies courses I had enough credits to earn a BA(Hons), joint history and classical studies. This then provided the foundation on which I studied further at Dundee, doing a taught MPhil and a PhD, both part-time, both in history (mainly Scottish). My OU degree was very well regarded by the lecturers at Dundee, and they particularly valued how it showed independent learning.

In more recent years funding changes by the UK government have slashed revenue to the Open University, and reduced the financial support for part-timers to extremely low levels. This is especially the case in England, where it is very unaffordable now to study with the OU, especially if, like I was, you already have a first degree. But I was retraining, in a totally different subject area, so needed a second chance. And many people are keen to study lifelong. The OU is at great risk now, but I will always be grateful to it for the support it gave me. And it’s an institution that should be very proud.

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Signs of improving reading ability

I’ve blogged here before about my reading problems, from the neurological illness (cerebral vasculitis, very MS-like) I’ve lived with since 1994. From quite early on in my illness I was struggling more and more with print. Even large print books were a struggle. Luckily ebooks helped, when they appeared, but I still struggled with academic books, including throughout my history PhD. Which, ironically, was on historic reading habits.

Well I’m pleased to report that there are signs that my reading of print books may be recovering a little bit, or at least improving. In the last few months I’ve managed to read two non-fiction books (one academic, the other pretty in-depth), in print form. Very slowly, no more than a chapter at a time, and often less than that. And often quite extended periods before I can read any more. But even this is something I couldn’t possibly have tackled in many previous years.

There’s still no way I could tackle reading a long novel or similar in print, including in large print format. But if I can manage to catch up on some of my backlog of academic non-fiction books, albeit slowly, that would be brilliant. It would also help me move some of my planned academic history research projects forward.

My cerebral vasculitis is in a much more stable state at the moment, and the improved reading would fit along with that. But it couldn’t be assumed to happen, especially after so long. It may be that my brain is rewiring a little bit. There are probably limits to how much better it would get, given everything. Anyway it’s all very encouraging.

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Chemotherapy and auto immune diseases

Was just commenting on a post in the Vasculitis UK Facebook group today, and reminded of the devastating daily nausea I had for years from Azathioprine. I started taking this drug in 1998 to control my life threatening neurological auto immune disease cerebral vasculitis. Basically the drug controlled the inflammation in the blood vessels in my brain, and kept me alive. Azathioprine is a very old chemotherapy drug, though not just used for cancer, but also auto immune diseases like mine. It’s quite mild, but it can cause the horrible side effects. I would feel sick within 90 minutes of taking the pills, and it lasted for up to 8 hours a day. Every day, for most of a decade. That’s what I lived with from 1998 onwards. Every single day. For some people the sickness goes away. Not me. I stuck with it because I suspected – rightly as it turned out – that all the cytotoxic drugs (including the main alternative drugs I could be switched to, and ended up trying later anyway) would make me hurl. Eventually, after another drug had been added to the mix in 2006, and I said I just can’t cope with this sickness from both, the medics put me on twice daily anti nausea drugs for life. That transformed my life. I wish I’d been on them sooner. Years later I had high dose chemotherapy infusions in hospital, which made me even sicker. But they only lasted a few months. Azathioprine went on for years. So yup, chemo and auto immune disease can be a stinker. And not just the obvious high dose infusions.

P.S. A point that I should add is that auto immune chemo patients don’t get the same support that cancer chemo patients do. We’re not given the same anti nausea drugs. Also no similar arrangements re free hospital parking for infusion days. But it can be just as tough. And a treatment that can go on for vastly longer.

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