Things neurologists don’t expect to hear during a consultation, example #327:
“I’ve made a comic book about having MS, and you appear as a character on the first page! Can I send you a copy?”
But that is exactly what I said to Prof K last time we met. And here is that first page:
I know he doesn’t really look anything like that. I don’t have an enormous Mohican either. And more importantly, I want to emphasise that nobody in the BartsMS team – or anywhere in the NHS – has spoken to me in that kind of offhand manner. Especially at the moment of hearing that life-changing diagnosis. But no matter how sensitively news like that is delivered, on some level what you hear feels like the words spoken in the above image.
The idea of making a comic about my experience of MS didn’t come out of the blue. I teach illustration at art school, and I’ve been making comics for years, but never in this sort of confessional, autobiographical mode. And this might come as a surprise, but using comics to tell stories about experiences of illness and healthcare is not a new thing either. Over the past decade or so, “graphic medicine” has been a growing field of the medical humanities. The term was coined by physician and cartoonist Dr Ian Williams to serve, in his words, “as a handy term to denote the role that comics can play in the study and delivery of healthcare”. Ian suggests that graphic medicine can play a valuable role in the following areas:
Reflecting or changing cultural perceptions of medicine
Relating the subjective patient/carer/provider experience
Enabling discussion of difficult subjects
Helping other sufferers or carers
And that’s definitely been my experience of it, especially “enabling discussion of difficult subjects”. I’ve always enjoyed experimenting with different styles in my artwork, and the comic I sent Prof K contains two stories, each drawn and told in a different way. The image above is based on the work of Mark Beyer. His funny but relentlessly bleak stories paint a picture of a cruel and surreal universe, and I wanted to try to pick up on that emotional mood in telling a story about how it feels to learn that you have a chronic degenerative disease. The second story uses the “underground comix” style of Ivan Brunetti. These sorts of comics are often deliberately transgressive and full of in-your-face toilet humour. When you’ve got MS you have… how shall we put it… a more complex relationship with toilets than most people have. I used this style to tell a story of one such incident:
Spoiler: it wasn’t fine.
What happened that day was actually one of the most humiliating experiences of my life. The comic goes on to depict, in excruciating detail, the process of beginning my first day on a new job by having to dash straight into the toilets and deal with the mess caused by suffering a bowel accident on the way there. Emotionally, it was pretty difficult to put all that stuff down, but overall the process felt empowering. Like saying to my MS, “whatever you do to me, I’ll still be myself, and I’ll find a way to laugh at you”.
I think in some small way this project has helped other sufferers or carers too. One time after giving a talk about this project a man in the audience explained that his sister had MS and they’d been working together on a film about it but had struggled to find a way of talking about the most confronting symptoms. His face lit up when he said “you’ve shown us a way of dealing with the shittiest parts of this disease!”
That last image isn’t from the comic, it’s a poster I made for a conference my work hosted last month. It talks about how making comics has helped me to cope with MS, and how that work has even brought me some professional recognition. One thing that’s not mentioned there, but is actually one of the best results to come from all this, is that Prof K requested a copy of the comic for a neurogastroenterologist colleague of his, with the intention that he use it as pre-course reading in teaching and training sessions. It’s lovely to have the interest of my academic colleagues, but the idea that this work might be of use in training doctors is rewarding on a different level. This is the other main benefit of graphic medicine: telling our stories is empowering for patients, but reading those stories can also help those who care for us to get a deeper understanding of the lived experience of illness.
Telling your own story can be hard, but it’s really satisfying. It doesn’t make my increasing reliance on a walking stick, or the increasing frequency of numbness in my right hand (my drawing hand!) any less upsetting, but it helps to maintain a sense of resilience and agency in the face of those things.
If anyone reading this is doing any kind of creative work or storytelling about MS I’d love to hear about it. In the poster I talk about privilege, and how my existing position as an academic made it easier for me to find a platform and audience for my own project. Maybe I can help other people find platforms for their voices too. I’d like to think so.
John Miers is lecturer in illustration at Kingston School of Art. His first comic about living with multiple sclerosis, So I Guess My Body Pretty Much Hates Me Now, was completed as part of a postdoctoral “researcher in the archives” residency at London College of Communication. It is now held in the Wellcome collection library and was voted “best one-shot” in the 2020 Broken Frontier awards. View more of his work here. Previews of SIGMBPMHMN are available here and here.
Comment ProfK: I’m delighted John accepted my invitation to write for the Blog. He also joined the Trial Steering Committee for “AttackMS” about which an update is overdue. Watch this space, as they say…