Sunday, September 04, 2005

Oh lord, it's hard to be humble

I was still feeling pretty low when I got up this morning. I had a night full of nonsense dreams. Then I got round to doing something I meant to do a few days ago and now I’ve gone all mushy.

I belong to a support group for people with my condition. I don’t get a great deal out of it to be honest, but I like to keep my finger on the pulse. The one scheme I am involved with is the “Buddy Scheme” whereby people who are able have a one-way pen-friend correspondences with those who are severely affected and unable to write. I did this in my late teens with a girl who has become good friends with me and I wanted to do it again.

Somehow I wound up with two “Buddies” by accident. One sends me short letters every now and then, but another I have been writing to since around Easter time without having heard a thing. It is quite difficult to write to someone, virtually every week, who you know nearly nothing about. You wonder whether your letters are even being read and if they are, whether you might have been paired with someone who really doesn’t like what you’ve got to say.

Then this week I got a tape in the post and this morning I got round to listening to it.

My friend Amelia recorded this tape one sentence at a time and there’s only about four or five minutes worth. She describes how, when I first started writing she was in a very bad way. After four weeks in hospital she came home and was stuck in a darkened room, having to wear earplugs all the time, unable to speak or anything. So, she says, feeling like she was making a friend at this time meant a great deal to her.

Now she’s doing better, as she can actually speak. This week she managed to stand up for the first time and felt seven foot tall. She says that I shouldn’t worry about how long the book takes me.

I hate to say this about a fellow disabled person, but by God; the lady is an inspiration! And it’s especially humbling since throughout most of the tape she’s thanking me for everything I have done. What did I do? I ramble on in letters to her as I ramble on everywhere else. Still, I don’t feel so useless this morning, except for the fact that earlier I was feeling really crap about my life when really it’s not nearly so bad as it might be.


Nicola said...

i think in this instance, it's fine. the way you describe what she did is remarkable, whatever your political/ideological belief. anyone who says they don't think that's true is lying for the sake of what we all know is a very tedious argument!

specially when she has the same condition as you , it helps you put it straight in your head, into context as well i guess?? there much be so much 'unknowness'

also for her, must've been hard to interact in that period - and still so now - so to have someone not only talking to her but someone who can better empathise (correct me if i'm wrong but don't you lot in particular have a hard time getting the nature of your situation through people's skulls?) can only be a good thing.

i hope you're ok and your friend feels more comftable soon


The Goldfish said...

Thanks Nic. Yeah, it is sometimes very hard to get the situation across - especially for someone very severely affected. I guess it is a bit like CP in this respect; with CP have a vast spectrum between someone with little more than "a gammy leg" and someone who needs help feeding and communicating. Unfortunately folks tend to imagine that the person they met or saw on the telly with CP is representative of the lot of you.

Many people are shocked about my poor mobility so they're just not going to understand when a person with my condition needs hospitalisation, drip-feeding and help going to the loo. And of course, even where there is no doubt in someone's mind about the physicality of a condition, there's still a tendency to think a person must be giving into it somewhat if they're so much worse off than a 'typical' case.