Today I will be going with my book group to see this event, which is part of the Small Wonder festival at Charleston. I have just looked at the site and seen that one of the contributors, M. J. Hyland, will not after all be there. I am disappointed. This morning I read her very good piece in Granta magazine where she talks about her experience of M.S. - of how she felt impelled to keep the illness a secret and how, until now, she has not written anything about M.S. I was struck by the relationship she has with her very wretched and dysfunctional family, for whom she feels a profound sadness. She says,
"I can't be near them, can't belong to them. I worry for them, dream about them, but I can't talk to them. They frighten me."
She says that "having MS felt tantamount to losing, and felt too close to being like them; a failure and a victim."
Hence her response, which was to keep it a secret.
What she says resonates; not because it echoes my particular way of coping with a chronic disease (though there have been periods I attempted to keep the fact of my M.E. a secret) but because I have known for a long time that people are frightened by illness and disease and feel much the same way about people with ME as M.J. Hyland feels about her family. The fact that most of us are not (yet - the time may come, given enough research) able to Win The War against it, that it just goes on and is something to be negotiated and endured, does not help.
What a catastrophe, then, it must have been to join the ranks of the 'failures' and 'victims'. How I would like to have heard her speak about it. But I am pleased to be going. A.L. Kennedy will be one of the contributors. A friend will be driving. I like visiting Charleston, even though it is rarely a comfortable experience (today we will be in a barn, must wrap up warm).