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Archive for the ‘disability’ Category

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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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

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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.

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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.

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

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

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

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

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

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Photo of part of Dundee University campus including an Oor Wullie statue

Autumn 2021 will mark exactly two decades since I started as a postgraduate history student at Dundee University. I thought it would be nice to reflect back on my experiences then. Not least because it was a life-changing step for me.

Originally I was a science student at St Andrews University, and started an EPSRC-funded computer science PhD in 1994. But at the same time I started to develop a progressive neurological disease, aged just 22, which would mean that I had to drop out of the science PhD.

After then I fought for proper diagnosis and treatment, which I got in 1997. The treatment which started then – and has continued – was for many years extremely gruelling chemotherapy, leaving me feeling nauseous and vomiting for much of the time. To take my mind off that I started studying part-time with the Open University. From 1998-2000 I studied history and classical studies, picking up a BA(Hons), helped by credit transfer from my first degree, letting me effectively jump straight into second year. But what to do next?

The Open University offered a taught postgraduate Masters, but one I couldn’t study more quickly than over three more years. Given my life-threatening disease I wanted to get on with things quicker. At the same time full-time study was totally out of the question, given how ill and increasingly disabled I was becoming. This ruled out postgraduate taught history study with St Andrews University, who in 2000 (and shockingly still in 2021) only offered full-time study options.

Fortunately Dundee University – another local university for me (we lived in Cupar at the time) – offered a part-time or full-time taught MPhil degree that could be studied part-time over two years. This course was timetabled to support part-time students, being based around Wednesday afternoon taught seminars for the first year, helpfully followed on the same day by the weekly departmental history research seminars attended by staff and postgraduate students. Over the summer months full-time Dundee history MPhil students would work on their research projects and dissertations, while part-timers were allowed the next year. The overall subject matter of the Dundee history MPhil was Cultural and Urban Histories 1650-1850, using the idea of the city or town as a “laboratory” to explore cultural and other themes. A particular emphasis was placed on Dundee as an example, but other Scottish towns and cities were covered, as well as places in England, mainland Europe, and North America. Good stuff.

The course – and particularly its teaching lead Charles McKean – was a warm and welcoming experience. Also intellectually stimulating, introducing me to the field of urban history, which I found fascinating. For the assessed essays and mini projects I would often draw upon examples from my own family history or local history from the Scottish Borders, my home area. For my year-long dissertation I worked on 17th century Melrose local court records, which involved my ancestors, even a g..uncle judge. I worked from voluminous already transcribed records, building a huge computer database of thousands of court cases, and wrote an analysis of these for my dissertation.

Part way through my MPhil I started working – again very part-time – as a research assistant on Bob Harris’s new Scottish small towns project. My contract was for a year, doing the research locally in Angus and in Edinburgh for the pilot study. Sadly my neurological disease relapsed hugely just after that year, so I couldn’t continue working on the project in its main phase. But the experience deepened my appreciation for urban history, introduced me properly to the fascinating period of change 1750-1820, and also led me to the topic reading history I would research for a part-time history PhD, again at Dundee University.

I’ve blogged before about my experiences as a history PhD student, so won’t cover all the details again. Suffice to say the Dundee history department continued to be a nurturing and stimulating environment to conduct postgraduate research in. My supervisors Bob Harris and then Charles McKean were phenomenally supportive, and as a disabled student – indeed one who was becoming increasingly housebound and disabled as time went on – I felt the university was extremely helpful, making adjustments throughout my PhD and vital practical measures for the viva. Winning AHRC funding part way through my part-time history PhD also helped hugely. By the end I was studying for no more than 5 hours total a week, just way too ill. But I completed the PhD within the 6 years allowed part-time. No extensions were needed, and just a 5-month official medical break, which helped hugely when I was going through a major health crisis and couldn’t study at all for that period and needed total time out.

Although I couldn’t work in academia after my PhD – just way too ill and increasingly disabled – the Dundee history postgraduate study established me confidently as an independent academic. I’ve since had numerous published journal papers and book chapters, and continue working on new research projects. For practical reasons I focus very much on research and writing that I can work on at home, but the wide-ranging training I got at Dundee, and especially in the taught MPhil course, gave me the skills and confidence to continue to flourish as an academic, in both familiar and less so subject areas. I am also very grateful to have been awarded an Honorary Research Fellowship in History by Dundee University in the years since my PhD, which facilitates my academic research, especially in terms of publishing new papers.

My gratitude to Dundee University and particularly its history department is immense. Thank you so much for giving me a fresh chance.

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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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I’ve been playing tabletop Call of Cthulhu roleplaying (RPG) games for 13 years. Played in my case by web forum postings, meaning I can post when I’m able to, and play with people all around the world. The online asynchronous forum method of playing has been very practical for me with my neurological illness which would rule out face to face gaming or anything requiring longer periods of attention at a time. In the main games I’ve played we work through adventures and scenarios that combine Doctor Who with Lovecraftian horror. Tabletop roleplaying is a sort of communal improvisation / shared storytelling / puzzle solving experience. Each character takes on a different character, and acts out that role, responding to the situations posed to them by the Keeper who runs the game. It’s a somewhat difficult process to describe, but a fun pastime, and a dynamic form of storytelling and game playing. Past scenarios in our linked campaign have included battling ghouls in the 1930s British Museum, aliens on future Pluto, encountering fishy folk in 1980s Dunwich in Suffolk, exploring late republican Rome, and now the latest installment set in Blitz-hit wartime London.

I love playing these games, and have got a lot of pleasure out of them. Our Keeper, who runs the games, has written and designed some excellent scenarios which are great fun to play through. The game is a combination of description, player decisions and chance. The latter is usually handled with dice rolls, normally digital in our case, and we have had some shocking luck along the way. Which can upend plots spectacularly, but makes the game unpredictable and exciting to play.

My character is a schoolteacher from 1950s Scotland, and one of the original characters in the series of linked Doctor Who games. She’s a companion of the Time Lord character, and so travelled to all these times and places. It’s amazing that she survived some of the things she ran into, not least given how bad her dice rolls have often been, but it’s been a marvellous journey.

Sadly it is soon coming to an end, although exactly how I will leave is not yet finalised. I have significant dementia like problems from my progressive neurological disease primary cerebral vasculitis, and these have worsened over the last few years, even while the disease has been more stable in other ways. I simply can’t keep up with game plots any more, not having a clue what has happened before plot-wise, either recently, or further back. I forget things constantly day to day, even hour to hour, and frequently minute to minute. It poses enough of a challenge when trying to follow plots in books, never mind trying to follow the plot in a long-running RPG game. I’ve tried to keep on playing, knowing that I am one of the few original players left in the game now, but it’s simply not viable.

So yes, sad to leave, but many happy memories, at least those I can just about recall. All the games are currently still online for me to reread, and enjoy again, marvelling at everything I’ve forgotten since.

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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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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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