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Posts Tagged ‘neurological disease’

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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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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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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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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I want to post about a consequence of the Brexit result that many people won’t have thought of: the impact on treatment and support for rare diseases. Since 1994, since the age of 22, I have lived with cerebral vasculitis, a 1 in a million diagnosis, which causes day-to-day symptoms similar to multiple sclerosis, but with the added bonus that it could kill me in a flash. Other forms of vasculitis are less rare, but all are rare. Vasculitis = inflammation in the blood vessels. In my case in my brain. Vasculitis is very under-supported by health services worldwide, causing huge difficulties and delays in diagnosis and treatment, which often leads to death. In the UK cuts to funding have impacted on cross-border referrals for vasculitis patients in Wales, seeking to go to centres of excellence in England, to get diagnosis and/or better treatment and support. And likewise for Scottish patients. Equally many patients in England have a considerable financial outlay, for life, for prescriptions of steroids and chemotherapy drugs that keep them alive. For life. No they don’t get these for free. Charities like Vasculitis UK are working to improve things, but it is a very hard job. Much of their funding and research comes from Europe, both in terms of money, but also working with colleagues elsewhere, to uncover new treatments, and improve support for patients. It is very unclear how this is going to be affected. My friends who are actively involved in Vasculitis UK are very worried. Before any Brexit-er tells me it will be ok, there will be a way, that it isn’t directly EU, or that the UK will replace the funding: no, we don’t know what will happen. And for such a rare diagnosis it is hard enough to get support as it is. The relationship with Europe for vasculitis research and funding is important. And right now the people who are working to save lives are very very scared. This makes me sad 😦 And scared myself.

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As the month nearly comes to a close I’m winding up my AcWriMo activities. And as always around this time I thought I’d look back on how things went.

At the start of the month I had three goals outlined, all involving academic journal papers in various stages of development.

Two of these goals were fully or better accomplished. One was revising an accepted paper, which I turned around in the first week and emailed to the relevant editor. Another was starting to convert a conference paper from spoken talk with PowerPoint slides to a written version suitable for an academic journal paper. I set out only intending to start this process, the first draft of converting the spoken text to words, with much further development and enhancement required later. But as things turned out I went far beyond this, developing many sections of the paper more fully, and having it much closer to possible submission to a suitable academic journal.

The remaining goal was to finish developing an already mostly written academic paper, ready to send to a colleague to read through and give suggestions before I develop it further prior to submitting to a journal editor. This was the only goal not fully completed, although I managed to overcome a major impasse, working out a new strategy for approaching one of the main case studies in the paper, which I then largely wrote up. There are many sections still to be finished off and polished, and it’s not ready for that read through yet. But it is well advanced, and I should be able to get it ready to email off by Christmas, with hopefully the aim of submitting it to an academic journal paper sometime early in 2015.

All this was achieved against the backlog of struggling for much of the month with my neurological illness, more so than usual. There were several weeks when I could barely manage an hour of writing total. And then there were better weeks when I might manage 2-3 hours total if lucky, again done in 1 hour bursts.

The main strategy I found for keeping going when well enough was to think in terms of which goals I would target in specific weeks. So I had in mind key activities for the first week, and the second week, and so on. This broke down what might still have been quite a daunting task – three quite ambitious goals for the whole month for someone so very ill with so limited time – into more manageable chunks. And if I put in the time, even in isolated one hour chunks here and there, I could make slow but steady progress. Breaking it down into week by week goals also helped to keep the momentum going, and that I had to get on with things, lest time slip by and be lost. But I did have to rest when too ill.

Academic writing month can be a wonderful focused time, but for me the best thing about it is the good habits it can help to develop, which can be applied throughout the year. So the importance of making achievable goals and to-do lists, breaking down larger tasks into manageable chunks, and keeping going, even in small bursts, to make progress in spite of time and other limitations.

So I’m very glad I took part again. I look forward to taking part in 2015!

 

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Just before the old year ends and a new one begins I thought I’d do a recap on how things have gone for me in the last year, particularly academically.

My honorary research fellowship was renewed again. This is from History in the School of Humanities at the University of Dundee. After I finished my PhD in 2010 I asked if I could get an honorary fellowship, to help me continue to access vital resources like electronic journals, which are typically only available to current staff and students of universities subscribing to them. This is particularly important as more and more university libraries switch from subscribing to print copies to e-journals, which, generally, are restricted in who can use them. I’m a life member of one local university library, and have another one nearby, but neither opens up their e-journals to people who aren’t staff or students. So this was important to allow me to keep up to speed with current research and new developments. And the fellowship has been renewed every year since. It’s also nice that when I give a conference paper or publish a new academic journal paper it provides some kudos to the department which has supported me so well.

Over the year I’ve submitted more journal papers. I learned early in January that another paper had been accepted. It’s derived from part of my PhD thesis, with new additional material, and will be published in Library & Information History in 2014. Another prize-winning paper is due to be published at some point in the Journal of the Edinburgh Bibliographical Society. And I was asked to do my first academic book review, for the Journal of Scottish Historical Studies, and it was published in November 2013. Other papers are with editors, or at various stages of development. And I was pleased to see two of my past academic papers became freely available online, under open access rules.

I took part in four academic conferences this year. The first was a conference for archivists, where I gave a talk about my experiences as a disabled user of archives. This was held locally, in a hotel in Dundee, so was easy for me to get to, but I was very weak from the neurological disease that day, and it was something of a struggle. But I wanted to present this important view, and was glad to make it. I blogged about both my time there, and the topic I was talking about.

In the summer I attended one day of a conference about the Middle Ages in the Modern World. This was at St Andrews, my former university, actually very near to where I was once a science undergraduate and postgraduate student. This was much fun. Again my husband was with me on the day, to help me manage everything in my wheelchair, and I blogged about my time there.

The third conference was that of the Economic and Social History Society of Scotland. Their autumn conference, in September, was held in Inverness, and focused on the topic of Rural Scotland. I gave a talk about my postgraduate Masters dissertation research examining Melrose regality court records (local court records for Melrose and the surrounding area) in the late 17th century. I am currently looking to publish this as an academic paper, and got very good feedback and had a very rewarding time there.

The fourth conference was held in late October to celebrate the work of my PhD supervisor who died a month earlier. It had been planned long before he died, and was a conference of mixed emotions, but ultimately positive.

I also had another flying visit to the Edinburgh International Book Festival in August. Not academic at all, but a wonderful celebration of books and reading, and I was very glad to be able to go again.

In November I took part in Academic Writing Month again. My goals were more modest this time: resubmit a revised journal paper (done), and submit a paper to the SHARP (Society for the History of Authorship, Reading and Publishing) 2014 conference in Antwerp (also done). Whether my paper for SHARP is accepted or not I will be there. I’m also planning on going in 2014 to a book history conference at St Andrews in the summer, and will be flying down to London to attend the Worldcon World sci-fi/fantasy/etc. convention at the Docklands.

Another major interest of mine is genealogy. I run a Cavers one-name study, researching all families with this surname, particularly before 1900. Developments on this in 2013 included me starting a new Y-DNA study to use DNA to look for connections between different Cavers lines. I also gave a talk about my Cavers one-name study at a Guild of One-Name Studies regional meeting at Perth. A version of this is online, with PowerPoint slides and my audio delivery.

I also run two one-place studies, where I research two parishes in the past. Both of these have a particular focus, for practical reasons, before 1820. The two parishes are Coldingham in Berwickshire, and Melrose in Roxburghshire, both Scottish Borders parishes with family connections for me. I continue to transcribe and develop online resources for these studies, and in 2013 this included adding a person index of about 9000 names for Melrose court participants between 1657 and 1676. Likewise for Coldingham I put online a list of 19th century prisoners from the parish.

I’m a roleplayer, and play Call of Cthulhu online at Play@YSDC. This works well for my neurological disease, meaning I can play as and when I’m able to. It also means I get to play with people around the world. In 2013 I started a new game in our ongoing campaign of Doctor Who / Call of Cthulhu crossover games. And I also started a game set on the Bass Rock, hopefully the first of many games (if our characters survive!) set in Scotland. Sadly I also dropped out of a game for the very first time – it was proving too unreliable in terms of keeping going, with long periods of inactivity by the keeper which I couldn’t keep up with – but I hope that won’t happen again for a long time.

Continuing the roleplaying theme I’ve been writing more of a series of crossover history/roleplaying articles, which I plan to compile into a book, probably in digital format. This is slow-going, but I hope to make more progress in 2014. Likewise I have been continuing to develop my very long-standing interactive fiction (text adventure) work in progress – a whodunnit set in Hermitage Castle in the Scottish Borders, about 500 years ago. Again another thing to work on in 2014.

My neurological disease continues to be a problem, but is being a bit better behaved at the moment, and may have gone into remission or need less daily chemotherapy and steroids to control it. I’m still left with the legacy of brain damage from the past, and wide-ranging disability that this causes. But I hope for a bit of a break from too toxic a cocktail of daily drugs. And maybe I will be able to get more done in 2014 than I have for a number of years. It may be just a temporary respite, but I want to make the most of it.

Anyway I’m looking forward to 2014 in an optimistic manner. Hopefully it will be as productive and rewarding as 2013 was.

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