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Posts Tagged ‘disability’

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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As we near the end of 2017 I thought I’d reflect on the books I’ve been reading over the last year. Note this is the books I’ve been reading for fun, usually on my Kindle. I have a to-read pile for academic books of quite scary proportions – well several piles! Academic books are trickier for me to read, due to my brain damage, because I usually can’t adjust the font etc. I also tend not to get on well with PDF-based ebooks. But I read ebooks avidly for fun, and got through a fair number this year. 89 finished so far, and there may be more yet.

My list of books completed in 2017 is online at Goodreads. I set myself, just for fun, the goal of completing 50 books this year, and have surpassed it. Particularly good again given my MS-like illness, which wipes me out for much of the time, and makes reading extremely difficult.

Looking through the list of books completed in 2017 a number of trends jump out. For example I really like fantasy and horror books. I’m not a big scifi fan, preferring fantasy, sword and sorcery, magic etc. So, for example, I’ve been continuing my read through (and reread in many cases) of all the 41 Terry Pratchett Discworld novels. I completed six more Discworld books this year, numbers 32-37 in the sequence, interspersing them with other reading material. I started reading book #38 last night.

Another series that I’ve been reading throughout the year, and will carry on doing so into 2018, is Neil Gaiman’s Sandman series of comics / graphic novels. I’ve read these before, and love them, and am rereading them on my iPad in Comixology’s guided panel view. There are 10 collected graphic novel volumes in the main Sandman series, and I read numbers 1-6 this year, and am part way through number 7. Again enjoying immensely.

Other comics that I read this year included those shortlisted for the Hugo scifi awards. As a member of the 2017 Worldcon (actually attending it, in Helsinki) I got a voter’s packet of many of the Hugo shortlisted works. And that included the comics up for the award. So I read loads of these. Many of the works, such as Saga, were parts of ongoing series, but I enjoyed them nevertheless, and have thus found more comics that I want to read in future. I also read most of the Hugo-shortlisted novelettes and novellas.

The Worldcon in Helsinki was held in August 2017, and not long after that I read several horror books in the run-up to Halloween. The first was Graeme Macrae Burnet’s Booker-shortlisted His Bloody Project, more crime than horror, but could easily fit into the latter genre too. I followed this with an annual favourite reread: Roger Zelazny’s A Night in the Lonesome October. I recommend this book to any fans of horror, weird fiction etc. Especially in the days before Halloween. It is rather designed to be read daily throughout October, though I always gobble it up more quickly. Other horror works read in October include Robin Jarvis’s The Whitby Witches, and Ray Bradbury’s The Halloween Tree. October was definitely a good month of reading for me.

Although as noted above I’m not a big fan of scifi I did read several Doctor Who books throughout the year. For me Doctor Who is less a scifi series than a storytelling engine with time travelling aspects. I also read famed scifi writer Michael Moorcock’s The Jewel in the Skull, though this is very much a fantasy novel of his, rather than the scifi that some may associate him more with.

Something new for me this year was reading a number of play scripts. I haven’t done this since I was at school, wading through Shakespeare etc. Thanks to attending a nationwide cinema screening of a live performance of Rosencrantz and Guildenstern are Dead I read the script of this play afterwards. To my surprise, finding play scripts vastly easier to read than most print books – lots of space on the page, not too much crammed text to wade through – this was followed by Liz Lochhead’s Mary Queen of Scots got her head chopped off, which I saw on stage in St Andrews in the 1990s, and Rona Munro’s trilogy The James Plays about Scottish Stewart kings James I, II and III. I have my eye on David Greig’s Dunsinane play next – definitely getting a theme here for historical Scottish ones!

Quite a few of the books I read this year were bought for me as birthday or Christmas presents, usually in ebook form for my Kindle, where I read with a gigantic font and huge line spacing – more in appearance like a Ladybird book for a 5 year old child. Such present titles read included The Moon Stallion, which I saw on the television long, long ago, and Frost Hollow Hall, another Young Adult book with a historical bent and several supernatural elements to it.

I’d like to mention the books that were my favourites this year, all of which I rated as 5-star in Goodreads. In reading order they are as follows:

  • A Hat Full of Sky by Terry Pratchett
  • The Crystal Cave by Mary Stewart, the first in her Merlin trilogy
  • The Weirdstone of Brisingamen by Alan Garner
  • The Swish of the Curtain by Pamela Brown
  • Dandelion Wine by Ray Bradbury, a love-letter to small town America and childhood in the 1920s
  • Mary Queen of Scots got her head chopped off by Liz Lochhead
  • Ms Marvel vol 5 “Super Famous” graphic novel
  • Saga vol 6 graphic novel
  • Comet in Moominland by Tove Jansson – read in the run-up to our trip to Finland
  • Peril at End House by Agatha Christie – one of my favourite Hercule Poirot stories
  • Rotherweird by Andrew Caldecott
  • Tommy v Cancer: One man’s battle against the Big C by Tommy Donbavand
  • The Moon Stallion by Brian Hayles
  • The James Plays by Rona Munro
  • The Fellowship of the Ring (Lord of the Rings part 1) by JRR Tolkien
  • A Night in the Lonesome October by Roger Zelazny
  • The Lie Tree by Frances Hardinge
  • Doctor Who Yearbook 1993
  • The Express Diaries by Nick Marsh
  • Frost Hollow Hall by Emma Carroll

To be fair many of these top-rated titles were rereads for me, including my absolute favourite Lord of the Rings. But I also found some new favourites to reread in the future, including the already-mentioned The Moon Stallion and Frost Hollow Hall, and Ray Bradbury’s Dandelion Wine.

So that’s my look back at a year of reading. It’s been fun! I look forward to reading more in 2018.

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20 years ago I was undergoing a battery of tests to try to establish which neurological disease I had. I’d fallen ill 3 years earlier, aged just 22, and was initially misdiagnosed with ME. My symptoms changed over the next few years, and looked increasingly like MS. A MRI brain scan showed multiple lesions, suggesting some form of inflammatory disease process. More tests were needed to find out what.

I had those tests on November 5th 1997, 20 years ago this weekend coming up. Scans of organs of the body, visual evoked potential test, a lumbar puncture, and many blood tests. I remember driving home to the sound and smell of fireworks. The new diagnosis came a few weeks later: cerebral vasculitis, inflammation of blood vessels of the brain, cutting off the oxygen, causing brain damage, and symptoms similar to MS.

For a long time the future looked bleak, especially after a relapse in 2004. Vasculitis is an incurable disease, but with luck – and appropriate treatment – it can go into remission. Treatment is often lifelong steroids and immunosuppression, to reduce the inflammation in the blood vessels. I’ve had a very tough time over the years, though have been more stable since I demanded high dose chemotherapy infusions in hospital throughout summer 2012. Those turned things around.

So I’m now managing on a lower cocktail of daily immunosuppression drugs. But I’m still getting worse. I recently renewed my Blue Badge and my mobility was significantly worse than when I’d last renewed 3 years ago. And I’m very disabled in other ways, including sleeping up to 18 hours a day due to the brain inflammation. I can’t work with this, and am very lucky to be alive.

But I’m happy! And still here. So thankful for that. But it’s frustrating having this condition, that I will never be rid of. It’s also difficult for people to understand what’s wrong. Even though I use mobility aids – usually 2 sticks, if not my wheelchair – most of my problems are inside, invisible.

For more on my vasculitis story see my page on the Vasculitis UK charity website.

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Followers of this blog may know that I completed a history PhD. But perhaps many won’t know that I did this while battling a severely disabling neurological illness. And even less known is how badly this affects my reading. Ironic since I was researching historic reading habits for my PhD.

Reading has been a problem for me since the late 1990s. I struggle with ordinary print, finding it swims constantly, and I can’t read it for long at all. Even managing to read a single page can be too much. So there’s no way I can read for a long time, or any extended book like a novel. The only print I can read now is either diving in to specific sections (very short sections!) of an academic book, or reading graphic novels (comics),

When I was retraining as a historian my postgraduate Masters degree had hefty reading lists for each week’s lecture and round-table discussion. Obviously I couldn’t read all those. So I’d try to see which books were most relevant, and narrow down what was needed. Really brutally, to specific sections, or abstracting drastically. Most of the reading list wasn’t discussed each week anyway, so I coped. And my lecturers, including my PhD supervisors, little knew how badly my reading was affected. Even now I battle to read academic books, and rarely can. Academic journal papers also pose a significant challenge. Note many of these humanities academic books are not available in e-format, especially older ones.

But though I could work around things to a large extent in my academic life I couldn’t avoid the problems the reading difficulties caused for my recreational reading. For much of the late 1990s and 2000s I stopped reading for fun completely. It was devastating, for an eager reader like me. I tried audiobooks, for a while having a very bulky tape player on loan from a national listening library, and receiving bulky tapes in the post. But this didn’t work well, because of my memory problems, which meant that I constantly need to go back to reread sections, to remember plot and/or characters. Easy in print, or ebook; much more impractical in an audiobook, especially a manual tape player.

What turned things around for me was ebooks, firstly on my iPod touch, and then in Kindle format. I adjust the font and spacing to be huge – more like a Ladybird book size, for little children. And then I find I can read, and read, and read. Still in fairly short bursts, and I still contend with major memory problems affecting my reading. But I was reading again, for fun. Woot!

That was several years ago, and my reading enjoyment continues. As an ebook reader for a long time my local library didn’t provide any ebooks, and I couldn’t read their print format books, even large print. More recently they added ebooks, but an extremely limited selection, with little that I wanted to read. Vastly less than the range of books provided in print format to the library’s users.

So I usually have to buy ebooks. Often I’ll pick up bargains, e.g. in Amazon’s special Kindle sales for 99p. Or relatives will buy me ebooks for my birthday or Christmas. Often I pay full price for an ebook, for something I really want. But it is quite an expensive habit, since I can’t borrow free books from the library.

On the plus side many out of copyright ebooks are freely available through Project Gutenberg, and can be downloaded to load onto e-reading devices like Kindles, iPads etc. I’m currently working my way through Charles Dickens, and have also read and reread all the Sherlock Holmes books. But I’m more likely to read new books, even if I must be careful how I buy them.

But I am reading! So it is more than worth it. Each year I set myself a reading challenge in Goodreads, where I record the books I’m reading. Given there can be extended periods (weeks or even months) where I’m too ill to read at all I’m modest in my challenges. But this year, based on past successes, I set myself the goal of finishing 50 books in 2017. So far the running total is 67. For example this October has been full of spooky reads. I’ve just started Ray Bradbury’s The Halloween Tree, which I’ve never read.

I know many people are anti ebooks. That’s their choice. But my story isn’t unique. I’ve heard of other people with similar medical conditions – e.g. multiple sclerosis, ME or stroke survivors – who also struggle with print, but with ebooks can adjust the font and spacing so they can read. I think this aspect of ebooks and reading is little understood and little recognised, but for me it’s been life-changing, and remarkably positive.

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Before I retrained as a historian I was a computer science undergraduate and postgraduate student at St Andrews. I only left that after developing a MS-like illness, aged just 22. I couldn’t carry on with the full-time PhD. I doubt with the brain damage I could even have completed it part-time.

It was very difficult, leaving that PhD. It took me years to come to terms with it. But I’ve kept in touch with people, and have good friends there. My husband completed his PhD there, a few years after I left, so we have retained strong ties with St Andrews Computer Science, even if it’s been difficult for me.

I was approached a few days ago by one of my St Andrews PhD supervisory team to write a profile for the CS alumni page. I’m guessing a call went out to the staff to try to get more profiles from past students. I didn’t expect to be asked, given the circumstances in which I left. But I think it was a positive thing.

Writing the profile brought back lovely memories, especially of my undergraduate days. It’s now been posted on the website. Click the “read more” link to see more of it, including my favourite undergraduate modules, and other memories.

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Inspired by a very thorough piece in the Guardian newspaper today by Kate Sang I wanted to reflect a bit on my own problems attending academic conferences.

Decades ago I was a young and healthy academic, about to start a computer science PhD. I could attend conferences in their full form: going to all sessions, all days, including meals and socialising.

Shortly after that I fell ill, at just age 22, with a neurological illness very similar to multiple sclerosis. It took some years for me to be diagnosed with cerebral vasculitis, but by then I’d had to drop out of that science PhD. Fortunately I retrained part-time as a historian, picking up three more degrees, including PhD. My disease is incurable, progressive in my case, and is treated lifelong with chemotherapy drugs and steroids to reduce brain inflammation and slow damage.

I can’t work in a paid form due to my illness. It is severely disabling. I sleep for much of the time, sometimes up to 18 hours a day, every day, due to the brain damage and inflammation. And even when awake I am often very confused and can only work for short periods. Near the end of my history PhD I could only work for five hours total a week, in one hour chunks maximum, spread over many days. But I finished the PhD. And I am now active as an academic. I publish academic journal papers, undertake new research projects, and speak at conferences and attend as an audience member. I have an honorary research fellowship from my university, though costs of attending events etc. are paid by myself.

Whereas 25 years ago I could attend a conference in its entirety, now I have to pick at most one or two days, with a day of rest in between. I will also usually have to be modest in my expectations re the number of panels to attend.

Firstly there are the practical issues of getting to the conference. I’m typically travelling with a wheelchair, which usually makes connections by train etc. difficult. Normally if I am flying to a venue it is far easier to get a taxi – albeit costly – from the airport to the hotel. But this only works if it’s within reasonable and affordable travelling distance. A few years ago I was invited to speak at a book history conference in Germany, which would have been very good for my research interests and academic networking. But the venue was far away from the airport I’d be using, and a taxi trip would be quite impractical in journey time and cost terms. Nor could I rely on being able to access trains. So reluctantly I declined the invitation. Fortunately I was asked years later if I would like to contribute a piece to the conference’s collection of essays. I submitted my piece, and the book is due to be published in a month.

Even on the spot physical accessibility is a major concern. I normally now use two sticks, but when at a lengthy academic event I need to use my manual wheelchair – with husband along to help push – to manage to last the day. And getting into and around academic venues can be highly problematic.

One thing I should praise is I’ve found conference organisers usually very helpful in helping my husband attend as my carer. He shouldn’t have to pay, since he is just there to push me around and help me navigate obstacles like doors etc. He is also an academic, but in a very different field from me. So he’s not there to listen to the talks. Most conferences allow him to attend for free. That is enormously helpful, and not something I expected. We still have double travelling costs, but not paying double conference fees does ease the cost for us to a certain extent.

Though against that positive experience very few academic conferences offer daily registration fees. At least in my field – humanities – you typically have to pay for the full conference or nothing. And with me often only attending half or even a third of the conference this makes them particularly costly for the time and benefit that I’m going to get in return from the event. Sometimes I do get a reduced attendance fee though. I am particularly grateful to a recent conference organiser, who given how little I was going to be there, let me attend for free. And my husband as well of course. Thank you Drew!

Once there, if a venue has stairs to reach talks I cannot possibly attend. Sometimes organisers move rooms, which I am very grateful for when it happens. But it’s not just about the room where the talks take place, but also about getting into a toilet, and getting to meals. I have severe bladder incontinence from my brain damage, which in particular causes huge problems with urgency and frequency. I need to go to the toilet a *lot*. Having a wheelchair toilet beside the room is good, but if I have to go constantly during the talks – as has happened – it can be very awkward.

One conference that I regularly attend relocated to a ground floor room, with a toilet beside it, which is good. But the meals including lunch were elsewhere in the building, and I would not be able to get there, without major difficulty. It was far easier for me to stay trapped in the room during the lengthy lunch break, while my husband fetched food for me. This cut down the vital networking with fellow academics I could do, though thankfully some historian contacts specifically sought me out at these times, and had lengthy chats with me in the room on my own. Likewise the book stands of academic books to buy at this conference were upstairs. No way could I get there. So again husband was dispatched, with iPad, to take photos for me to browse, and also to bring any specific titles of interest down to me to look at. In this instance the Brill publishing rep actually came downstairs to take the order from me directly. He was keen to help, but it was still frustrating for me not to be able to browse through all the books in person.

Sometimes I attend conferences with multiple streams of talks on at once, in many rooms, even a dozen and more in one case. For these conferences I will always try to let the organisers know in advance which specific panels I want to attend, to make sure I can reach them ok on the day, and rooms can be swapped in advance if need be. But that only works if the messages are passed on correctly at the other end. At the SHARP 2016 book history conference in Paris, at the Bibliotheque Nationale, I’d checked all the talks in advance, and was assured by the organisers that I would be able to reach them. When I got there on the day I found a panel I very much wanted to go to was up many stairs, in a building without a lift …

But perhaps the worst aspect for conferences for me as a disabled academic is how intensive they are, and how crammed the days are. Often they start at 9am or even 8am, and continue until 6pm or 7pm, with a packed set of talks running throughout those periods. Very tiring in brain concentration terms, and much stamina needed to get through. I understand organisers are trying to fit as much in as possible for attendees. But it is exhausting, even for fit and healthy academics, who can find it wearing. For me it’s impossible to attend even a full day of this. So sometimes I’ll have to choose morning or afternoon, or if I am lucky afternoon and evening. Or I need to try to factor in some sort of rest time, which is difficult in a venue that I don’t know well, crammed with conference goers. I remember at an Ada Lovelace event in Oxford a few years ago that I went back into the main lecture theatre – then deserted – during lunch, to have a bit of a rest, and quiet time to myself, while everyone else socialised out in the lunch area. That quiet time refreshed me enough mentally to allow me to stay for some more talks in the afternoon.

I know that it’s unusual for someone to be as bad as me health-wise and still want to attend academic conferences. But the problems that I have described aren’t unique to me, and some of them – especially issues of fatigue and mobility issues – will be shared by other academics. Not all of these academics will be so obviously disabled. I remember that when one conference I mentioned above was moved to a ground floor venue this turned out to benefit quite a few other attendees, who would not have said anything before. So more accessible venues can benefit a wider academic population.

In practical terms I’m not sure how much longer I can keep attending academic conferences. And if I do it will have to always be done in a modest way, within my limitations. With travel costs, and logistical challenges, there is a trade off between costs and benefit. I will have to continue to decide if it is worth it for me. But for now it is. I just hope not to run into too many practical challenges in future conferences …

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I’ve been spending much time in the last week in the 17th century, transcribing a lengthy poem about a corrupt court judge at Melrose in the 1680s. Doing that reminded me of the talk I gave in September 2013, at the conference of the Economic and Social History Society of Scotland, held in Inverness. I thought it would be nice if I put the PowerPoint slides from that online, so have done that – link here. It was a 20-minute talk, as is usual for academic conferences, so I was limited in how much I could say. But I covered a lot in the time allowed.

My talk was titled “Glimpses into a time of turmoil: examining the regality court records of Melrose, Roxburghshire, 1657-1706”, and was based on the dissertation for my taught MPhil degree at Dundee. I studied the voluminous local court records for Melrose regality, and had a fantastic time. I have ancestral connections in Melrose, going back to this period, and lived there myself for part of my childhood. And as a disabled student it was a perfect project: the records are largely transcribed already, so I could work on them at home, as able to.

In the process of the research I built up a gigantic database of court cases, pursuers and defenders. The index of people’s names recorded is online already, as part of my Melrose one-place study. There were probably only about 2500 people living within the court’s jurisdiction at this time, making the vast numbers of people recorded as using the court quite astonishing.

The slides don’t record everything I said in the Inverness talk though. For example there’s a detailed slide of the many debts murder accused John Halliwall weaver in Gattonside left in 1673 after escaping prison before his trial. I explained more about Halliwall’s story verbally on the day, not on the slides. He escaped on horseback, after a court officer let him out of jail to help him sell ale!

I’ve also spoken about the 17th century court records to the local historical society in Melrose, many years ago, in a well attended talk in the town.

There are so many other stories I want to share about the Melrose community from these records. For example a g… uncle of mine was judge of the court from 1657 to 1665. Well he was, until he was charged with “striking and hurteing of Robert Mott, servitor to John Bowar, portioner of Eildoune”. His own court fined him £10, and he lost his job. But that, and more, is for another day!

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