Epilepsy Awareness Day

Today, as well as being day xxx of the global Coronovirus Pandemic, is Epilepsy Awareness Day. Epilepsy awareness has come into my life in a pretty significant way over the last couple of years.

A bit of context – at around 6 months old, last year, our daughter Orla started having seizures and was diagnosed with a rare form of epilepsy called West Syndrome. In short, Wests can be REALLY BAD. We will forever be indebted to the UKIST charity, as without their website we probably would not have recognised the type of seizures that Orla was having and she would not have got treatment so quickly. Wests is so rare that a number of medical professionals did not recognise her seizures and it was only because we were equipped with this knowledge that we were able or argue for the urgency of Orla’s need.

Epilepsy Awareness, you see, is vital.

To our cautious relief, after two gruelling courses of steroids, numerous MRIs and EEGs, and other medication Orla has been seizure free for six months. She faces a number of challenges but the epilepsy was being held at bay…

… until Saturday, now 17 months old, in the midst of Covid-19, Orla started with a different form of seizure, every two hours, day and night. Twelve seizures per day.

As the brilliant epilepsy nurse said to me over the phone, “There probably isn’t a worse time for this to be happening”. Gulp.

However, we were given a face-to-face emergency appointment with her consultant yesterday. She’s amazing, our consultant. Incredibly clever AND kind.

The seizures that she is having now seem to be focal seizures, so not the same kind of epilepsy as before. She has been prescribed two types of medication to try, as well as having an emergency EEG this morning to try to find out more. Nowhere had the meds in stock yesterday so hoping they have them ready for today.

Again, thanks for being kind, people. I know everyone’s got their own personal issues they’re going through at the moment.

And I’m sure it doesn’t need saying but please stay at home in order to free up the NHS to provide all of its essential services in these exceptionally difficult times.

[Orla pictured yesterday.]

Update: Sadly Orla’s EEG results showed signs of the return of West’s Syndrome. She’s started another course of steroids today, meaning she is immunosupressed and therefore vulnerable to Coronavirus. We are all now self isolating for at least 12 weeks.

 

Positive Negatives (Part 1)

Just prior to his death from pancreatic cancer in August 2017, whist still in possession of just enough manual dexterity to manoeuvre small objects in his hands, my father in law loaded a black and white film into his 35mm camera for the final time and shot a roll of photographs of (and possibly for) my daughter, who was three at the time.

Some time after he died I took the roll to be developed, returning to the lab a couple of days later to find that he had sadly loaded the camera incorrectly and the reel of film remained unexposed. Disappointed, and consoled by the sympathetic sales assistant who at least didn’t charge me for the development, I nevertheless pledged to learn how to operate this camera – a classic Canon AE-1 SLR – and take a roll of photos of my daughter, in his memory.

A couple of years somehow passed and I finally found time to load up the camera to tentatively take some photos. My daughter, the original beloved subject, now almost five years old, was accompanied by my second daughter, born the year after my father in law’s death. This time, sending off my own (colour) film to be developed, I noted the excitement involved in awaiting processed photos and their accompanying negatives, a feeling of anticipation recognisable from my childhood but lost since the advent of instant digital photography.

My photos returned, a little out of focus and underexposed, but mercifully not blank. These pictures, at least for me, served as a small memento honouring my father in law’s intention, but also as a record of my two children now fixed in time on 35mm negative, in their materiality somehow distinct from the kind of daily digital photographs contained as data on my phone and shared liberally with family via email and on social media.

I noted that the quality of the image, composed of grain rather than pin sharp pixels, possessed a certain rich, evocative aura. The colours were rendered beautifully, in a way that initially, for me, evoked something of the past. Of course this association with the past only really arises because film photography, as a practice, is itself associated with history, superseded more recently for many by the ubiquity and convenience of digital.

Rather than being archaic, however, film generates particular visual renderings of the world that digital does not – unless through intentional post-processing. Through these photos I felt I had returned not only to a way of representing the world that I thought I had lost but also, somehow, had reconnected to a world in and of itself that I had forgotten ever existed.

Until the advent of digital we viewed the world, on paper and screen, through renderings made using light hitting physical film, rather than light and sensor technology. Our world’s transition from colour to black and white, with the birth of colour film, was perhaps less subtle and more blatant. But how, I wonder, has a transition from film to digital shifted how we perceive the world around us?

I can’t hope to fully answer this here, but it is a question that I now carry with me, as a result of this first (of many) reintroductions to film.

 

New project

I am working on a new research project, looking at meanings made around graffiti – more details here…

'live, love, graff...'

74229CEC-3478-47A1-9ED4-FE8F8834D43E [artist unknown] ‘Slow Graffiti’ is the website for a research project that intends to explore the socio-cultural meanings made around graffiti, created and located in one city. Whilst a range of studies examine graffiti as an (anti-) social cultural practice (Ross, 2016; Avramidis & Tsilimpounidi, 2016), there is limited work using new literacies (Street, 1997) as a lens for exploring streetart’s contribution to a city’s ‘textual landscape’ (Carrington, 2005). I position graffiti writing as a multimodal (Kress, 2009) literacy practice, situated within in a particular local and cultural context. Whilst recent work has encouraged taking a multimodal perpective on graffiti (Edwards-Vandenhoek, 2016) this has only been on the basis of the analysis of still photographic images, and therefore I intend to extend this approach to involve the voices and insights of other participants. Work which takes a new literacies approach to graffiti is sparse, the exceptions being DaSilva-Iddings, McCafferty, &…

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UKLA 2019 – abstract

'live, love, graff...'

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I will be presenting an overview and early findings from the project at this year’s UKLA conference in Sheffield:

‘Live, love, graff’: Making Meanings around Sheffield Streetart’

This presentation will explore the socio-cultural meanings made around graffiti, primarily created and located in the city of Sheffield. Whilst a range of studies examine graffiti as an (anti-) social cultural practice, there is limited work using new literacies as a lens for exploring streetart’s contribution to a city’s multimodal textual landscape. As such, I position graffiti writing as a literacy practice, situated within in a particular local and cultural context. I conceptualise graffiti as an assemblage, situated within a network of wider practices, generated both by those who create and view the work.  Here, I consider multiple perspectives on three individual pieces of graffiti, located in Sheffield. I consider the meanings made around these pieces, in relation to the space in which…

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Hearing

In the gaps between teaching and marking I’ve been working to finish an article on listening. Or, more specifically, on the value of considering sound, together with drawing, as a means of understanding the social world of children. I’ve talked about this as a combined sonic / visual approach to analysis. I might even get chance to send it to a journal soon…

At the same time we have discovered that our baby daughter, Orla, is profoundly deaf. She got the diagnosis at just five weeks old, after ‘failing’ the initial hearing test on her first day in the world. One of my first responses was to learn some sign language, specifically the phrase ‘I love you’. I have found myself using it a lot.

After a string of diagnosis meetings at the hospital we have already had her fitted up for some tiny hearing aids, which she will try after Christmas. We have chosen the sparkly earmolds option as I think Orla’s older sister, Ava, will like them.

Speaking to a doctor about the possibility of a cochlear implant we are taken aback when he suggests that ‘she would be unlikely to meet her potential without one’

Well, I guess that depends how you define potential, doesn’t it?’ I counter, in the most frustrated voice I can muster.

Well, academic, social and getting jobs,’ he clarifies, either not getting my point or dismissing it outright.

Sigh…

Busy Business

Been really busy recently, too much to take full account of. So just a few things that come to mind.

Last week I presented at the 8th ESRC Research Methods Festival in Bath, as part of a symposium on Comics. This was organised by the brilliant Lydia Wysocki and also featured Jorge Catala-Carrasco, Lucy Tiplady and Sarah McNicol.

My slides are here:

I went straight from Bath to Cardiff for the UK Literacy Association International Conference where I presented, again, on comics.

In this more expansive presentation I drew on both my own doctoral study and also the comics used in the Gaming Horizons project as part of our scenarios deliverable. I considered the role of drawing in our lives from childhood and beyond, and questioned the concept of the ‘iconic’ image in representing cultural diversity.

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Also at UKLA I was honoured to receive the Student Research Award for my thesis. I got another fancy glass object to go with my one from last year...

I was also invited to present on my thesis to give an overview of the work to anyone who hasn’t already been subjected to me talking about the thing. My presentation from that is here.