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Posts Tagged ‘disability’

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

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

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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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I was invited to speak at the Scottish History Society AGM today. Which normally would be face to face in Edinburgh, but this year – of course – is online, by Zoom. I was speaking about a forthcoming publication I have with them – transcript plus accompanying essay – about a poem recording events at the local court in Melrose in 1682. A poem written back then.

It went very well. I’ve been so extremely ill with my progressive neurological disease lately, and am still recovering from that flare in symptoms, that I was worried I wouldn’t be strong enough, especially if I’d had little sleep beforehand. When my brain shuts down it’s quick and sudden, with initially slurred speech then rapid confusion. And that could have struck at any point through my 20-minute slot (10/15-minute talk, plus time for questions after).

But I made it through. The audience enjoyed the talk, and are looking forward to reading the full piece when it is published. I was able to field the many interesting questions and discussion. The other talks were stimulating and interesting, and I was able to participate in their Q&As too. And best of all I felt engaged in and part of the academic community in a way I haven’t for ages.

Meanwhile though back to sleep more …

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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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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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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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