Marion Michell on illness and creativity

In the last week of August 2016, BBC Radio 4's Woman's Hour broadcast a series of interviews, conducted by reporter Melissa Viney, with women who have used their creativity to help them through illness. As part of this series, SELMESG member Marion Michell spoke eloquently about the limitations ME has imposed on her, but also about how her situation has shaped the materials and the ideas she works with.

You can listen to her interview, broadcast on Thursday August 25th 2016, on the BBC iPlayer. It lasts just over 7 minutes. If you follow the link you can the scroll down to "Creativity and Illness: Marion's Story".

The BBC have kindly given us permission to publish the link and transcript on our website but ask us to point out that the transcript is ours and that they are not responsible for any errors it may contain.

I wanted to crochet a pair of girl's legs; I found that I could crochet lying down; crocheting was something I hadn't done since, I think, fourth or fifth grade and at the time I did not like it at all and I had not thought I would ever want to use it again; but I had a crochet hook and I had some wool and I thought I'd try it; and I couldn't knit because when you knit you hold the two needles in quite complicated ways and you hold the weight of what you are knitting on the needles; whereas with crocheting you have one stitch on the crochet hook and everything else lies on your belly - if you work like I do - so I didn't have the weight in my hands; and I thought I only remembered one stitch, but I taught myself crocheting - that was a huge breakthrough for me but also strange in a way because I did not consider it art; I had a few years of struggling with myself thinking "Yeah, I'm aching but it doesn't really count" - I had this quite snobbish view of what it meant to be an artist and what kind of media were allowed - at best I thought of crocheting as a craft; over the years I've changed my mind! The good thing was that things really took off from there because I found that I could crochet 5 minutes here, 10 minutes there, and it's also lovely because you see something growing - gives you a sense of progress and of achievement which is of immense importance when you can't work.

I really I gained in self-confidence through the acceptance of of my work into exhibitions and especially the amazing prospect of having something in a biennial, which I would have loved to get to myself, but obviously that wasn't possible - but my work represented me in the world and my work travelled into the word.

Right outside my window when I lie in the certain position on the living room floor I can look up through the window and I can only see the sky and I watch the clouds rushing, some birds swooping or something. When I lie on the sofa I can see the tip of the lilac tree which will be in bloom in a month or so, I can watch the birds, or I can watch the shadow-play on the wall. Sometimes my eyes don't work and I must say I have become much more aware of sounds because I don't last long into the afternoon and I end up curled up on bed and I will lie with eyes closed curled up on bed; I may listen to the birds, I may just listen to the silence. I sometimes feel when nothing works anymore in the body and I can only breathe and listen, always the last thing I can do, the last thing I can do is listen to something.

Well, last year, when things got really, really bad and I lost function in my hands I started writing more. I need to be creative in some way and I started a blog which I called "supinesublime" because I needed something to sustain me in, I think, what was the most difficult period after the first two years when I fell ill, because I could hardly speak at all, I could not see much, I could not watch television, things were stark and I decided I would write and I would find the most eloquent, beautiful, concise ways of describing this strange, invisible, silent life of mine - and of many, many others who may be even worse off than I am. So I would spend a whole day thinking about one sentence, lying curled up on bed, eyes closed, and all that, and I would speak that sentence in my mind only and reshape it and reshape it until I thought it was a good one and then I would to move on to the next sentence. And that was like a thread - not a crochet or wool thread this time but a thread of words that told me and the world that I was alive, and that I had something to say and something to give.

This is from the 16th of September 2015:

"I'm a squeezer of moments, a wrestler of worth and meaning from lucid periods that are never long enough. As soon as I have the tiniest ounce of energy I want things luminous!

"This is not a lament or an exercise in melancholy or a hero's tale, but an attempt to insert myself into the world, worm myself and all those other invisible ones into your consciousness with my words, my craft, my artistry. And while I'm at it I might as well try to turn a bit of straw into gold…"

I think the art has helped me survive; it's given me luminous phases; it's made my world much, much bigger; it's given me a purpose; it's given sense to my life - past and present; I think it may also give me a future; it's connected me into the world in different ways; I've got more contact with other artists now, with people who are ill, with people were well. For me it's a kind of light; I'm not a religious person and I wouldn't know what it means to be spiritual or something, but I think the art making may connect into that - and it brings light to my life, and maybe to some others as well.

© Marion Michell
Catherine Hale talks about the impact of long-term illness on friendships and your own sense of sef-worth.

On 23 January 2016, on Radio 4's Woman's Hour, reporter Melissa Viney interviewed three women about the difficulties of maintaining friendships in long-term illness, one of whom was SELMESG member Catherine Hale.

The link to the episode of Woman's Hour is The feature is about 34 minutes into the programme, and Catherine's contribution runs from about 36 to 39 minutes. A transcript of her interview is below.

We are grateful to the BBC for permission to publish the link and the transcript on our website, but they ask us to point out that the transcript is our own and that they cannot be responsible for any errors it contains.

I'm Catherine Hale, I'm forty, nearly forty-five now, I've had ME since I was 18. The whole of my 20s and early 30s I was almost permanently house-bound nearly all the time, so that meant that I dropped out of all the kind of spheres of life that normal twenty year olds do - work, social life, college, travelling, you name it, I couldn't do any of those things. The hardest thing, I found, was not being able to make new friends in the way that you normally do, and when you can't make new friends, it means you become more and more dependent on those few friends that remain from the past. It's so painful to be reminded of everything that they're doing that you can't do and to be reminded about how much more you need them than they need you and I think that can put such a strain on the friendship.

[What do you think being ill has taught you about how society at large views illness]

I suppose society has quite a limited understanding of illness as something that is, that should be a temporary thing - you know, everyone has experienced some kind of temporary childhood illness in their life, measles or whatever it was, or flu, and that's about as far as most people's concept of illness stretches. You know when somebody has an illness that's expected to recover, they get bounds of sympathy and flowers and special treatment; but when that illness then continues and doesn't recover, I think people find that incredibly difficult to deal with, it's almost like you're breaking some kind of social convention; illness is ok, you're relieved of your normal responsibilities in life on the basis that this is a temporary state of affairs but when that doesn't get resolved then I think people really struggle. I think it's a common experience that all the sympathy and all the special attention kind of dies away.

I think there's a very painful sense of loss of your imprint in the world when you're ill for a very long time, you almost feel like you don't belong in the outside world anymore and I think that feels really painful and that you don't have a role in life outside of maybe the four walls of your home and I think it's really really difficult to keep up your sense of self-worth when that public side of you kind of shrivels away to nothing it's really really difficult to hold onto the feeling that you are someone with just as much worth as anybody else.

© Catherine Hale