Three Little Words / #MEawareness

It’s ME Awareness day. I’ve had ME/CFS for over twenty years to a mild-moderate degree, since I had Glandular Fever in 1993. I’ve had better years when I’ve almost felt normal, but it’s always been lurking. I’m only as well as I am because I’ve been lucky enough to be able (just) to pay for tests and treatments unavailable on the NHS (I have regular B12 and Magnesium injections from a private GMC-registered doctor of environmental medicine.) Others are not that lucky and the NHS still does not provide adequate treatment for this illness.

This blog is about attitudes and what to say – I’ve put up with some rancid comments over the years, not least when I wrote for Guardian Comment is free under the pseudonym Jayne Austin about ME and welfare benefits. Last night, I made a very quick and messy little comic to celebrate ME Awareness day, and to suggest how easy it can be to say the right thing (with a nod to Schulz, Peppermint Patty and possibly a few others – what can I say – it just came out!) TLW_web1_PaulaKnight TLW_web2

FFI: http://www.meassociation.org.uk/      http://www.actionforme.org.uk/

And if you fancy it – here’s where I get a few things off my chest: I’ve felt at times that rather than bother to educate themselves about the illness and how they could help, some people have been all too quick to judge. I feel that some of the stigma instilled by right-wing media in the 1980s is still imprinted in the ether: ‘Malingerers’ Disease’; ‘Yuppy Flue’; ‘Workshy’ albeit no longer in those words. These papers are still printing back-peddling articles with titles such as ‘ME is real after all!’ We know! The World Health Organisation (WHO) have recognised it as a physical and neurological illness since 1969.

Here are some things that people have said over the years with regards to the illness, with the answers I wish I’d had ready but didn’t, due to feeling dismissed, angry or hurt. I should probably grow a backbone and respond at the time, really, but distance brings reason and it’s hard to think straight when you’ve just been stung. This is not to say that others haven’t been supportive, too, of course, but raising awareness means confronting some of the ignorance. I realise that some of these words come from misunderstanding rather than malice – all the more reason to raise awareness.

[My voice = bold]

I’ve been diagnosed with ME.*Tut* You haven’t got that – I have a friend who has ME and she can’t get out of bed! It’s really serious! ME is a fluctuating illness, and comes in degrees. Sometimes all I can do is lie down, too, but you don’t see me at those times. 

But you don’t look ill! You can’t see this illness. Some people with cancer don’t look ill, or even feel ill, but you don’t query their illness with regard to their looks. I feel you are trying to catch me out for a crime I haven’t committed.

I remember back then – you were so boring and didn’t come out or drink much! Poor you, it was a bundle of laughs for me too. 

Oh but you’re always ill, Paula. Sorry to be such a bore – what a terrible chore for you. ‘Chronic’ means ‘recurring’ or ‘persisting’. 

Everyone gets tired though! Right. But they are not tired all the time; they are tired after doing a normal day’s work, at bedtime – not just from walking up the stairs. And tiredness is only one of the symptoms, but I guess you’re not interested in hearing about them – you are interested in dismissing me rather than hearing me.

I know Paula is just a hypochondriac (in sympathy, to my husband). Thinking you are ill when you are not ill, and obsessing over illness, isn’t the same thing as seeking answers and possible treatments that might help a multi-faceted illness for which there is no cure.

Maybe you’re just not ready to get well yet? I know your sentiment comes from a good place, but I can’t simply decide to get well any more than someone with MS, or any other illness, for that matter. I’m not a magician. Also, I’d happily trade an organ for full health again – that’s how ready I am – although I’m not even allowed to donate blood let alone an organ.

Maybe if you try to do a bit more exercise your tolerance would increase? We call it Post-Exertional Malaise in the trade. Overdoing exercise can exacerbate symptoms in people with ME – see hereIn fact, in extreme circumstances, people have died from being forced into treatments that include Graded Exercise Therapy (GET).

Go on – have a drink – it’ll do you good! You know you want to. Yes I do want to – there’s nothing I’d love more than to tie one on with you right now, really! But No, it will set me back. I can’t sleep after drinking alcohol, and it can be harder for people with ME to process toxins. It might take me days to recover from even a relatively small amount. But I can be witty, friendly and good company without alcohol. Is that OK? And I’m a cheap pub companion, when I make it out.

I can’t get a dog yet because I can’t guarantee being able to walk it twice a day. I bet you could if you tried! No. Pushing myself unduly can exacerbate my illness. I know this from having done so. Please give me some credit for knowing my own health better than you do. It’s OK to push myself occasionally but not long-term.

Why don’t you play the violin any more? What a waste! Same reason as last time you asked – because I can’t hold it up for long enough due to muscle pain.

GP, 1994: You have Post-Viral Fatigue Syndrome

GP, 1995: You’re just unlucky!

GP, 1995: There is nothing we can offer you other than another sick note!

GP, 2007: Yes, maybe you should have some tests – it does seem to be persisting!

And on websites that shall remain nameless, I’ve been referred to as a ‘hypochondriac’ and someone with a ‘mysterious illness’.

Please help to spread awareness about ME and share this blog and cartoon – thanks!

Heredity

Here is a comic on the theme of heredity that I did a couple of years ago. It is part of my collection, X Utero (A Cluster of Comics) available from my shop, at Orbital Comics and Foyles in London.

It was a way to process the knowledge that, not having had children and not having siblings, family traits will die out with me. Quite an egotistical thing to be concerned with, really, but one that people who haven’t had children occasionally think about – possibly because they are glad or sad that they won’t be passing on their DNA! Rather than being too concerned about my own DNA coming to rest, I was more sad about the prospect of family photos becoming obsolete – so I made a comic with them for anyone who ‘cares to take a look’. It might have worked a little better if I’d been able to find a photo of my dad as a child wearing glasses!

And, this week, Andy Oliver has reviewed this comic along with my other comic of a graphic medicine flavour, Spooky Womb, in his Small Pressganged column on the comics news site Broken Frontier. You can read what he has to say here.

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Graphic novel progress

Here’s a timeline and brief diary for my graphic novel, The Facts of Life, to date. It’s been a case of ‘comics interruptus’ so far for all sorts of reasons, but it’s gathering speed now and I’m ‘in the zone’:

2006: After reading Persepolis by Marjane Satrapi, I realise that it’s possible to be a middle-aged woman writing memoir using the medium of comics. Can I play, too? Seeds of idea for a autobiographical graphic novel germinate. Start an alphabetical card file of memories. I begin to sketch memories and draw my first comic strip How a Baby is Made. Tentatively show one or two amenable friends who emit positive noises and suggest I go for it. I go to a comics convention for the first time but feel that neither myself nor my story fits somehow, and leave discouraged. (It would be a long time until I discover the the indie self-publishing scene).

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2007:  I enter How a Baby is Made to the first Observer Graphic Short Story prize – but it’s not really a short story. Join Deviant Art as ‘Missnibs’ and post strip there – but I’m not yet au fait with social networking and don’t get very far.

How a Baby is Made 1

How a Baby is Made 1

2007/8: Submit idea to a new comics publisher – initial interest and very encouraging but nothing solid. My proposal is still a little under-cooked. And so am I.

2008-10: Hiatus – all will become clear in book! Discover Laydeez do Comics.

2010: Timeline of memoir ends so ready to start writing – theme of story has changed somewhat due to life events! I go to Laydeez do Comics for the first time and feel more encouraged that there might be a readership for my story. I start to transfer the card file entries to colour-coded post-its, which stay on the wall for over two years until the glue goes crispy and they start to drop off. I use these headings to start writing scenes in words. Join Twitter as a proofreader (my other work) but end up using it to meet comics people instead, thus discovering Graphic Medicine. Further enthused. Sadly, I don’t attend the very first Graphic Medicine conference because I mistakenly think it’s for academics and medics only.

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2011: Get going! Background research and much reading. Enter 17 pages to Myriad Editions’ inaugural First Graphic Novel Competition. It’s good to have a goal. Air project in public for the first time at Laydeez do Comics in May (where I hear about the competition). Attend Arvon Foundation Graphic Novels course where I receive some welcome feedback and meet more lovely comics people – in full flow of quenching thirst from the overflowing cup of comics camaraderie at this point. In November I speak about my project at Comics Forum in Leeds at the Graphic Medicine day. It’s the first time I’ve spoken at an academic conference and it seems to be well received, although I’m extremely nervous. I’ve finally met ‘my people’, professionally speaking, this year! Trawl through old photos.p1_2010_gray

2012: Good news – reach shortlist of Myriad competition! It’s the first time I’ve got so far in any professional competition. Keep in touch with Myriad as project progresses. More research, reading, and story-boarding in between paid freelance work. Make my first self-published comic, Spooky Womb, to dip toe into water. I take it to autumn Comiket and it sells well. My first children’s books as author are published this year, too. A year of firsts.

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2013: More good news! Sign contract with Myriad Editions. Then follows another unfortunate 8-month hiatus. In summer, I speak at the 4th Comics and Medicine Conference in Brighton, which buoys me. Unearth old teenage diaries and letters. Start working on book again towards the end of the year, when I finish the artwork for my prologue.

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2014: Finish first draft of storyboards. Feeding of recycle bin with superfluous splurge. Successful application to Arts Council England for funding to complete my book. Re-read letter to make sure! They definitely said yes. Have a go at making a handwritten font for the lettering – aka a week of faffing resulting in alphabet spaghetti rather than beautiful lo-fi fontage plus sore knuckles from all the gnawing. Begin to make working drawings from the storyboards, which I transfer to Bristol Board for painting and inking. Fonts can wait until patience is restored.

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Onwards: Part three to jiggle,190ish pages of artwork and lettering to draw and complete, and the cover to design. Now working on it for six days a week stopping at eight o’clock most nights. I don’t get out much. I hope friends and family can bear with me for the confinement over the coming year. BBC Radios 4 and 6 are my friends now, plus garden snails and local cats at lunchtimes.

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Graphic Medicine podcast

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Photo by Ian Williams.

Last year, I presented my work at Ethics Under Cover: Comics, Medicine and Society (4th International Conference on Comics and Medicine). I spoke on a panel named ‘Who’s Story is it?’ alongside Peaco Todd, Linda Raphael and Mita Mahato. Here is a link to the podcast (mine is second on the recording): Graphic Medicine Podcast: Brighton Panel 4A

My talk was titled ‘In or Out: Considering the impact on others of writing and sharing graphic memoir’. I spoke about my work in progress in relation to the responsibility for secondary characters’ stories in memoir (those who have not asked to be in a book), especially where medical details are involved. I also spoke about my other comics about fertility, miscarriage and childlessness and the response to sharing that personal work on social networking sites between 2011 and 2013.

The conference provided a generous portion of brain food, and I heartily recommend creators with medical/ health themes to their work to attend, or propose a paper to, future conferences. Also, do check out the Graphic Medicine Podcast archive where you will find interviews and talks by many talented comics creators and academics whose work reflects the ‘interaction between the medium of comics and the discourse of healthcare.’ (Graphic Medicine website quote).

This panel took place first thing on a Sunday morning, so I’m sure those delegates who were still wisely tucked up in bed will welcome the chance to hear it. Although I’m still not sure how anyone ever sleeps in Brighton with those tireless over-enthusiastic seagulls.

Fun Fun Funding

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I’m happy to announce that in March of this year, Arts Council England awarded me a grant (Grants for the Arts) to support the completion stage of my graphic memoir, The Facts of Life, which will be published by Myriad Editions.

The grant will provide funding for the artwork stage of my book: It will cover materials I need to carry out the final artwork, a mentor for the duration (Hannah Berry), frames for an exhibition, and attendance at some comics events after the book is published. It also means that I can now set aside other freelance work and focus solely on the book for the next year. I feel very grateful, and fortunate to be doing this work.

Today is the start of my grant period – in celebration of this, here is an almost-complete page (it needs some more seagulls in panel three!) My sketchbooks from the last ten years are coming in handy now – the people on the beach are lifted from them – some from sketches I did on the very beach that this page depicts! Two-hundred-and-twenty more pages to go:

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Thanks to the following people for their statements of support for my application, sage nuggets of advice, and support in kind: Corinne Pearlman, Hannah Berry, Bryan TalbotDavid Gaffney, Matthew Roche, Katy GreenRavi Thornton, Nicola Streeten; and John Austin.

 

Happysad memory comic

These pages are from a longer comic I made about my late father-in-law, Pete. I made it towards the end of 2011 when he left hospital to return home to be with his family in his final days after a long illness. The title refers to something later in the comic, but I won’t be sharing those pages yet (if ever) because it’s probably too soon.

These first pages are about my favourite memory of Pete. I’m not sure if I’ll ever finish the comic, but, at a difficult time, it felt cathartic to draw and it was my way of coping. Perhaps that’s enough and I’ll never feel the need to finish it. I wanted to share this, though, as my way of celebrating his life and what was an essential part of his character – humour. We laughed about this occasion for years afterwards and I prefer to remember this sort of thing rather than his illness.

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PC2

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Panel two, page two, might worked better at a page turn – if I ever do finish it, I shall rectify that!

Comics from Brighton and Bristol to the Lakes!

A long-overdue catch-up post:

Upcoming comics events

Next weekend, I’ll be tabling at Bristol Comic and Zine Fair, organised by the lovely folk from Bearpit Zines. There are 40 exhibitors – some from Bristol; some from beyond – it promises to be a fantastic day. I’m especially excited to see that Gareth Brookes will be there with his graphic novel The Black Project out from Myriad Editions (my publisher-to-be). I’ll certainly be buying a copy. Gareth was the winner of Myriad’s First Graphic Novel competition in which I was shortlisted with The Facts of Life.

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Then, on 18th October, I’m off to the inaugural Lakes International Comic Art Festival where I’ll have a table in the Comics Clock Tower sharing with Ian Williams (Graphic Medicine man). On the Saturday night I’m taking part in Quick Strips – Myriad Authors and Friends, where it is suggested that we will be ‘revealing all’. I’m hoping that this means a 6-minute presentation of work in progress! It will be my first time as a guest at a comics festival.

I’ll be taking Spooky Womb, X Utero, and a newly repackaged non-limited edition version of A Fray, along with some pages in progress from my book. If you can’t make it to these events, my latest comic X Utero is available in Blackwell’s at Wellcome bookshop and Orbital Comics. Or you can buy them direct from me.

Ethics Under Cover – Graphic Medicine conference

In July, I went to Brighton to present at Ethics Under Cover, Comics Medicine and Society (Graphic Medicine) on the panel Whose story is it? with Mita Mahato, Peaco Todd and Linda Raphael. I talked about the ethical considerations of secondary characters when writing memoir – especially if their stories also contain medical details. I felt that it went well personally (I sold all my comics) and our panel was well received. Podcasts from the conference are regularly uploaded here. It was lovely to catch up with old and new Graphic Medicine comics friends and spend time eating samosas(c/o Mita) on Brighton beach.

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In other news

As a result of contacts made at the Brighton conference, I was approached with an offer of some paid comics work, which I did over the summer. I can’t say much about it yet for confidentiality reasons, but I was happy to have been able to use my artistic skills in a way that might be useful to others in a healthcare setting.

I’ve also just received a contract for a new children’s picture book text (as author only). I wrote it earlier in the year and Bright Literary Agency have been representing it since May – so I’m please to have had this interest so soon.

I expect that’s just about enough for now – phew – worralorralinks!