Among the exhibits at Skin Lab, part of the ‘Skin’ exhibition at Wellcome Collection, is ‘Against Nature’, a series of portraits produced by artist Gemma Anderson and Melissa Smith, a patient with epidermolysis bullosa (EB) – a genetic skin disorder that causes the skin and internal body-linings to blister with the slightest physical contact.
Introduced by the clinicians running a trial for a new EB treatment, Gemma and Melissa met on a number of occasions to discuss Melissa’s experiences, resulting in a series of intricate drawings and an audio interview. These provide a poignant and personal insight into the daily life and treatment experiences of a person with EB. They also explore a host of metaphors and analogies, such as the parallels that exist between the deterioration of the skin and the decomposition process of plants and other organic forms, and finding beauty in decay.
Here, Melissa recounts how she got involved with the project and what it taught her about her condition, and herself. In a companion post on the Wellcome Trust blog, Melissa discusses the innovative new fibroblast treatment described in the exhibition.
When the Wellcome Trust first contacted me about this exhibition, I was intrigued. The new EB treatment that had attracted their attention had been a new experience for me in itself. In a lifetime of having dressings and creams on my skin, injecting cells into the skin had been a great leap forward in the treatment of EB, although to the outside world it may seem like only a tentative step in the right direction.
From that new encounter now came the chance of another: being drawn by an artist. I had been interviewed for TV, magazines and newspapers before, but that was all so structured and practised that every interview felt the same. It was too interesting and unique an offer for me to pass over, and so I agreed to get involved.
I did feel some apprehension; EB is so visual, so destructive and often disgusting, that I wasn’t wholly sure that I could face those issues head on. But I knew there was only one way to find out.
It took quite a long time for Gemma and I to meet, due to EB playing its usual tricks by putting me in hospital, or leaving me housebound. I finally made it to Gemma’s studio in April, and instantly felt at ease. I think I had been expecting an eccentric, middle-aged archetypal artist (you’d think I would know better than pigeonhole people!), but I found a lovely, friendly young woman, with whom I shared a lot of interests.
We talked about EB: how it affects me and how I treat it on a daily basis, what the injections felt like and how they had worked. We also talked about my interests, and I realised then how personal the drawings would be to me.
I told Gemma that I’ve never identified with the image of EB sufferers being as delicate as butterflies’ wings, as it’s far too saccharine for me. I feel it glosses over what EB does to those who have it.
When we discussed my favourite book: Against Nature by J.K. Huysmans, everything fell into place. My love for his description of hothouse flowers – which, even with their wounded, scarred appearance, retain a sense of exotic beauty and wonder – fitted with Gemma’s interests and artworks perfectly. I felt that Gemma understood my interests better than anyone else had before, and my worries about facing up to the visual aspects of EB dissipated.
Sitting for the drawings was very restful, and whilst Gemma drew my face and upper body, classical music on the radio helped to switch off my fidgetiness. I thought that I would feel self-conscious, but I actually felt very relaxed. And when Gemma drew my hands, she lead me to look at them in a different way; to stop seeing them as deformities, and instead see all of the intricacies of their skin and shape. I could see them in a horticultural light, reflected in the Anthuriums.
Though I had related to the hothouse flower imagery I had found in Against Nature, it wasn’t until Gemma began to draw me that I could really believe in it, especially when she likened my wounds and blisters to flowers blossoming and opening up.
The process of sitting was much less formal than I had expected, and thus much more enjoyable. We could chat and get to know each over the sessions, which, for me at least, added to the drawings; what I saw in them and what I felt when I looked at them. Even the audio interview was different and new; I didn’t have a camera in my face or a stern journalist asking the same old questions before putting words in my mouth. We sipped our tea, calmed our giggles, and then recorded what felt more like a friendly chat than an interview.
I greatly appreciated Gemma asking me to tell the story about a night out with my friends, because it’s a reminder that you really can live with EB, even though it might be difficult at times. As a friend of mine said, “I don’t live with EB, it lives with me”.
‘Against Nature’ felt like the perfect title for this project; I adore the book, because it gave me a greater understanding of my life, and gave me a new way of looking at my skin, which transferred into Gemma’s drawings. I’ve also had comments throughout my life that imply that I, and my skin, aren’t natural, that genetic defects are ‘against nature’. But it is also perfect because this treatment, and any other medical intervention, is ‘against nature’. I believe that Gemma’s work shows how beautiful and complex being ‘against nature’ can be.