Wednesday, January 24, 2007

another country

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;

12 comments:

cusp said...

I've only recently begun to read your blog but I am really enjoying your posts. You're very wise ---- sage is a better word, I think.

As someone who has probably had M.E. for 30+ years but only been diagnosed for 7, I recognise many of the lessons and strategies you've learnt and employ. I've spent a lifetime trying to get by and manage without knowing I was really ill and not walking with a figment of my imagination.

I'm a visual artist and still can't find that space where I can be creative because I still try to juggle -- having two young children I have to --- but your musings give me hope and courage that one day I will find the way to come back to my creativity.

I hope you enjoy the job at Uni. and send good thoughts for the future.

Reading the Signs said...

cusp - thank you, your comments are very much appreciated. When I began this blog I knew that writing about M.E. would be part of it because it's an element of the process I work with. It's encouraging to know that what I've said has been received positively - and by someone who also lives with this. I know how it is to have young children. Good wishes to you - hope, courage and joy on the way.

Ms Melancholy said...

Please keep sharing this stuff. It is important for all of us, chronic illness or not. I love your take on the world. Oliver James is currently writing on the difference between 'doing' and 'being'. You seem to have it sussed.

Reading the Signs said...

dear ms m I appreciate your warm words and will keep doing as you suggest. I perhaps sound more sussed than I am - will look out for Oliver James (a book?), I liked his Observer pieces.

nmj said...

Hey Signs, I like your blog, an ME blog that weaves the illness with lots of other stuff, where there is the reality of living with the devil, and an absence of self-pity.

I read Ms M's comment and at first read Jamie Oliver for Oliver James! How's that for a scrambled brain . . .

Reading the Signs said...

cheers, nmj - I did exactly the same, and had a flash picture of Jamie Oliver, spatula in hand, telling us all like it is. Spooky.

That's so pants said...

Signs - you are an inspiration. Wonderful, enlightening post.

Ms Melancholy said...

It's called Affluence. An analysis of so called 'advanced' capitalism, consumerism and how it screws us all up. Haven't read it yet but it's on my list.

Ms Melancholy said...

Try again! I think it's called Affluenza.

Reading the Signs said...

ms pants - you're a brick and I am the more encouraged, thank you.

ms m - I like the look of it and will get a copy when it's ready.

Maggie said...

Came to your blog from nmj's. Delighted to find it. I'm just coming up to my 15th anniversary with ME (early March).

Reading the Signs said...

hello maggie - so you're another soldier. thanks for looking in -