So I went with my nicely completed forms, had the interview and all looks set fair. I’ll be teaching what I love but not doing too much of it, and as it’s for a university I’ll have the perk of being able to use the lovely library. It won’t be till September, so my gap year stays intact. And I never mentioned the letters M.E. And no one will have guessed. It’s not relevant, wouldn’t have fitted into the ‘disabilities’ section of the form (there will be obstacles to negotiate but I am used to this) and is in any case very bad PR, I always tell myself.
On the whole, it is not something I put up as a subject for discussion. I’ll mention it as one might mention a wooden leg, as something that might have to be taken into consideration in some circumstances. There is something about long-term illness and bereavement (here, at any rate) that embarrasses people. Better to cross the road and pretend not to have seen you rather than say – whatever it is they think should be said to someone bereaved. It also frightens people. A number of people have wondered if you could catch it (forgive me, I seem to be in italic mood today). Well, this is a question but once the illness is established, no chance. One then has to field the Good Advice, the but-isn’t-there anything-you-can-do, disbelief, hostility (oh yes, sometimes) and ultimately lack of comprehension. The fact that people don’t understand is something we have to learn to live with. Of course they don’t, none of us understand about others, the best we can offer and hope for is some imaginative empathy along the way.
So why am I here talking about it and why is it up there on my profile, especially when the last thing I want is for people to say, oh Signs, she’s the one with ME? It isn’t who I am but it has informed the way I live and the way I look at things. I take my time because I have to. I look at small things because I have to. I am not looking for the silver lining – the illness is a bastard, it is against all things creative. But I am creative and the way I have worked with it and around it is creative. I no longer expect to live the life I might have had. I live this one: in an age where people expect to do more and more without thinking about it, I have to think about everything I do If all I can do on a given day is walk to the end of the road to post a letter then I had better be awake and notice things. I have had to learn. It is good for poetry. I am a single-tasker. I am not a woman who “juggles her life.” I am time-rich. Granted, much of this time is not “useful” – that is why I can’t do a great deal of anything. But because there are spaces in my life I have time to send cards, speak to friends and look out of the window at the snow melting on the poplar trees. Though I hate the illness, I have grown to love the spaces.
Chronic illness/disability is another country. I didn’t choose it, but I know my way around and behave in the way that is best suited to it, sometimes not but it’s my choice. I send postcards: here is a picture; this is how it is;