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!

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.

The Phoenix Project: Surviving Cancer

Last year, I was commissioned to create a comic as part of The Phoenix Project: Surviving Cancer, a research project based between the Royal Hallamshire Hospital and the University of Sheffield. Five other comics artists familiar with Graphic Medicine contributed work, including Mita Mahato and Andrew Godfrey – although we didn’t immediately know who else was involved. They can all be seen here.

The project began by looking at issues surrounding cancer, sexuality and relationships. The project team interviewed cancer survivors, asking them about their experiences. Excerpts from these interviews were then given to artists recruited from the graphic medicine community. We showed the resulting images back to the participants and assessed how they addressed their concerns. This work is vital because completing treatment is not the end of a cancer patient’s story: many are traumatised and vulnerable to further medical complications and a host of other concerns. Little is done to address these issues because cancer research focuses on treatment and prevention. These powerful, provocative and moving images have helped survivors come to terms with how cancer has effected their relationships and sex lives. There are many other issues that patients need support with. The Phoenix Project aims to use visual and digital means to address them by developing an holistic package of care, available to all.

(from The Phoenix Project website)

Here is the first page of my response to the brief. The rest can be seen here. PaulaKnight_Phoenix_Normal_p1

The interviews were provided to us as written transcripts, which I personally found challenging to interpret without meeting the people myself. I wonder how much was lost in translation or how much, as an artist, I could have gained in understanding and empathy had I been present at the interviews. Logistically, and for confidentiality reasons, this probably wouldn’t have been possible.

I hope I’ve grasped the right end of the stick with regards to characterisation, for example. I feel that without meeting the people, perhaps there is too much room to subconsciously project self into the interpretation. And, is this a bad thing or a good thing? I might have detected hints of humour in the dialogue of my chosen patient, because that is how I often deal with difficulty myself, and then projected that onto the unseen patient. Indeed, that might also be why I chose to concentrate on that particular patient for the work.

With that in mind, I must point out that I’ve never swung from a chandelier in my life – not for sexual purposes nor to transport myself from one side of a room to another. I doubt the patient has either; it’s meant to make a point – and to provide a little humour and irony when situated with the title ‘Normal?’. And, humour can help with affiliation according to Elizabeth El Refaie, author of Autobiographical Comics: Life Writing in Pictures.

My own project is autobiographical with a medical theme, so it was interesting to concurrently tackle biographical work with a medical theme – especially with regards to the confidentiality issue since my story also includes others’ medical narratives.

We have yet to be informed of the patients’ responses to the work, and I am quite nervous, but intrigued, about the prospect of this.

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.

PC1

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.

bristolzinefair_v2.png (600×848)

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.

mytalk_Comicsmedicine4_brighton _UniSussex.

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!

New comic: X Utero

Just back from the printers – my full-colour 20-page collection of 10 short comics created between 2011 and 2013 (many of which I’ve shared here). The themes are reproductive status, language used around miscarriage, heredity etc. Some are very personal but some seem to have proved relevant to others who’ve had similar experiences (judging by responses I’ve had since I began sharing them).

Availability: It’s for sale here at my comics shop. I’ll be taking it to Ethics Under Cover: Comics, Medicine & Society (4th International Conference on Comics and Medicine) where I’ll also be presenting work in progress at 9am on 7th July. It will also soon be available from Wellcome Bookshop on the Graphic Medicine bookshelf. Wellcome will have a table selling their Graphic Medicine titles at the Narrative Medicine Conference, June 19-21st, and X Utero will be included. I’ve just found out that Linda Humphreys MSc, will mention some of my images in her presentation at the same conference. She used some of my comics in her reflective writing class for Genetic Counselling students at Griffith University, Queensland, Australia.

This comic is probably the last on this particular subject matter I’ll share until my book is finished. And, I’m afraid the title and cover of X Utero comprise a shameless play on the band Nirvana’s final album In Utero. It seemed fitting!

My next printed thing is likely to be Motorways – more of a sketchbook collection and not an anthropomorphised uterus in sight!

‘Do you have children?’

Last week I attended a meeting by Gateway Women, an organisation run by Jody Day for women who are ‘childless by circumstance’ – be that infertility, chronic illness, or by marriage etc (there are many and varied reasons). It was full of interesting, vibrant women, none of whom appeared to live up to the pejorative stereotype of ‘crazy cat lady’. Well, blow me down with a feather!

One of the hot topics at this particular meeting was what to say in social situations when asked: ‘Have you got kids?’ This question can be very difficult for some women to hear, let alone answer. All women are asked this at some point in their lives; we live in a pro-natal society that, if you haven’t reproduced, demands to know why not. Never mind whether you wish to answer such an emotive question.

Here are some storyboards I drew on the subject in 2011, and which I presented at the Graphic Medicine Comics Forum day: Visualising the Stigma of Illness in Leeds, November 2011. I talked about the stigma surrounding miscarriage and resulting childlessness. You can hear the podcast of my talk here. These pages comprise a generic and condensed version of events. Thanks to Deb Joffe for modelling!

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I feel that many people who do have kids hope to hear ‘yes’ in reply and are ill-prepared for a ‘no’. In my experience, they tend to: carry on their line of inquiry; make assumptions; and offer unsolicited advice. There’s a fine line between genuine interest and intrusiveness – and I’ve experienced both. But I acknowledge that it’s awkward for both parties. I no longer ask people that question and have now developed antennae that help me to read between the lines. I don’t mind being asked as much as I used to, because I feel better prepared (I’ve had plenty of practice). It’s not only childless women who struggle with this: I know mothers who wish people would take more of an interest in the non-mothering side of their lives too – they don’t want to be defined by their reproductive status alone. And men are not immune either.

I’ll expand on this when it comes to artwork, and I’ll save my reasons for foregoing adoption for the book*. I’ll also be addressing my own thoughts on remedies for sticking those severed panels back together, but in the meantime there are some good suggestions on the blog No Children, What now? I hope that, in future, both parents and non-parents will settle into a mutually respectful way to handle this hot potato without anyone getting burnt.

*The Facts of Life (working title) is due to be published by Myriad Editions in 2015.