Saturday 2 March 2013

Ten years on

Last Monday was the 10th anniversary of my developing CFS.

It was a curious day.  Leading up to it I was very aware of it looming ahead of me, and yet whenever I tried to think about what the day meant to me I couldn't: my mind shied away from the topic.

I sincerely believe that I have a remarkably good quality of life, despite my illness.  In may ways, I'm pleased to be ten years down the track.  Those early days were so scary and baffling; these days I'm mostly dealing with the familiar.

And yet I do so wish life was different.

I grieve for the lost possibilities - especially for the children I most likely will never have.  I'm sick of hurting all the time, of rarely having the mental energy to have a decent conversation, of having to push through mud every move I make, of failing to understand so much of what I hear.  I'm sick of having to be so disciplined.  I'm sick of feeling exhausted all the time. I miss human company and generally being out and about in the world.  I so wish I had a body and a mind that worked.

And I wish it was more OK to say these things.

I recently listened to a radio programme about the new Disability Studies course being offered at Otago University.  As the lecturer talked about negative stereotypes people have about disability, I came to think that she was conflating two quite different things: statements/acts that suggest people with disabilities are of little value and statements/acts that suggest that life with a disability is harder than life without one.  For example, she thought it was bad that people had sent sympathy cards to the parents of a baby born with Downs Syndrome.  But what is wrong with coming alongside parents in their grief at the loss of the kind of future they'd imagined for their child?  That child is likely to have a much more difficult path through life than their peers - both because of their disability and because of society's attitude to it - and I wish it was more acceptable to say so!

Sadly, in the church people with disabilities experience another kind of pressure that again makes it hard for us to acknowledge how hard our lives are.   The church doesn't enjoin us to feel good about our disabilities but it does exert considerable pressure on us to endure them cheerfully - to be like Cousin Helen in the What Katy Did books, rather than like Katy herself in the early months after her accident.

So, on this anniversary, I wanted to tell some of the bits of my story I don't often tell: the bits about how hard it is, rather than the bits about how, on balance, it's OK.  I guess the fact that I'm posting this nearly a week after the actual anniversary tells part of that story, too,  It's hard having a head that takes more than a week to put ideas together coherently, and fingers that struggle to type, even when I am using my mouse-typing programme...

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