Friday, June 16, 2006

Did I disappear?

I think I went away and forgot I have a blog. I think I went away and so-called forgot I have a so-called blog. Of sorts, called, so.

Crap. Dunno what to say about stuff at the moment. Crap. Just crap. It's all crap.

Something big has happened at work that I am not going to go into for the sake of others, privacy, etc. It's just too big. But I'm gonna talk about the D-word. Disability. That word Jeremy Beadle said he didn't like on our podcast. And this week I'm agreeing with him. It's shit. It's a horrible label, it warps what and who you are (because it's such a loaded word, even though it shouldn't be - revisionists unite, etc).

But when something big happens, when you or someone you know has a setback, something that seriously affects their life and lifestyle, well there's nothing good about it, nothing to celebrate, nothing interesting, nothing but hard hard knocks, too much to think about, a mindfuck challenge of extraordinary portions (yes I said 'challenge' cos sometimes it's applicable and not meant patronisingly) ... life can just be fucking hard when medical matters catch up with you and there's NOTHING YOU CAN DO about it.

The D word thing. What can I say.

Yes it's spawned an interesting and worthwhile sub culture and counter culture. No denying it's important and good. But lets not lose sight of why it was spawned in the first place ... not because we love having things wrong with our bodies ... but because, when we eventually get our heads round our lives, know who we are, and feel we want to strike out and hit the world ... it's then that we seek strengths, we want pride, we want dignity, we want respect and equality. But getting to that point isn't something you can achieve with ease, it's not something that all people can understand because events are just too damn harsh and life limiting oftentimes, it's a road not to be sneered at or sniffed at. But with time, support, perspective ... things move on. They do. I've been there several times. And you don't recognise you're moving forward until you look back five years later.

When I became blind ... my erly memories are of shame. I was ashamed of who I was. I was only 13 but I didn't want anyone to see the new me. Thinking back 22 years to that point in my history, I feel anger mostly. Anger that I allowed myself to feel that way and anger that I had no counselling to give me an alternative view. But I did meet others at the time who were blind and stronger than me. I found it astonishingly enlightening ... and it was only then that doors started to slowly creak open. In the meantime ... small comforts.

And talking of such, I'm going to make a cup of tea.


Lady Bracknell said...

I agree entirely. The events which lead to us being all out and proud and criptastic are indescribably awful at the time.

As you say, years down the line, once you've got your head round it and adapted to the changes, there's a tendency to downplay the initial crisis, if for no other reason than that it's self-defeating to dwell on the negatives.

But the initial crisis really does make you feel as though your life is effectively over. And, if anything, it's harder to witness someone you care about going through something like this than it would be to have to go through it yourself.

Bad things happen to good people, and it makes you want to shout and throw things.

Kinda makes you understand why the normies feel so sorry for us...

The Editor MBE

marmiteboy said...

I agree entirely with your sentiments Damon. Sometimes it is shit. And when you acquire a disability it is such a life changing event it is so very hard to come to terms with. Sometimes we can all be a bit worthy and dogmatic about disability. Our politisization sometimes doesn't let us see the whole picture. I remember commenting on Ouch about Frank Gardener and his wish to be 'able bodied' again. I criticised him. I was wrong.

Such a life changing event does need getting used to. I know some people take it on the chin and get on with things but I believe they are few and far between.

As Lady B says when shity things happen to people we care about it does bring us up short. I hope whatever has happened at work has a postive outcome.

Katie said...

I agree as well, as sometimes we all can feel bad about who we are, and it takes ages and we never know who we are inside until we grow up.

Life can be tough, but we have to remember that we are special in our own way and even though we may have our impairments, we are individuals who get on with life.

I sense that you are a person that has had lots of hurt and the shame has not contributed to how you are feeling now.

I've helped quite a lot of people by talking over their problems with them and heard all their hurt and pain and it's a worthwhile thing to just talk over peroblems with someone who you trust.

It can be hurtful, talking, but that's the best remedy to sort out all your worries.

Hope you feel better by what I have said here, and don't feel down, because we all feel down sometimes, but think of the good things that you enjoy in life, and they will outweigh the bad things.

Good luck my friend.

Melbamae said...

You are so right Damon. It's one thing to look back at ones life thirty years after disability first occurred...see how much one accomplished, how far they've come how well they've adjusted...and then, fucking life throws another curve. One has become "settled" "adjusted" and used to one set of circumstances, finds love, lives life.....and then medical conditions can come creeping in with bloody devastating consequences. Not just for the person affected but for those who love them as well. It must be dreadful to be in the position of having to constantly re-adjust the goal post. When one watches the one one loves lose the tiniest bit of ability day in and day out, watching their vibrant and full of life partner or friend lose bits of themselves to disease or chronic conditions, it just sucks. No amount of disability awareness really sets it to rights.

As one who is slowly witnessing the love of her life lose one ability after another I can say with definite blows.

BloggingMone said...

I have read your post and all of the comments several times and was a bit hesitant to post a comment myself, because I do not share your experience. I have seen others going through the experience of aquiring a disability, but still it is second hand experience, if at all. But there is one thing, I would like to comment on. You said that when you became blind you felt ashamed. A lot of disabled people say that during their childhood they felt, they were a "medical problem" for their parents. The one of all children, which is putting a burden on them, because no matter how young they were, they somehow felt their parents did not know how to cope and did not know anything about the future of their child, except for medical advice given by doctors they have consulted. That feelings, however, changed dramatically, when they met grown ups with the same disability. They all felt it was - as you said - an astonsihingly enlightning experience. The one thing I don't understand is why this always happens too late, often out of mere coincidence and almost always leaves out completely parents, friends and relatives. It would also be a tremendous experience for "normies", and an opportunity to change their behaviour from feeling sorry to understanding. Even if the other is shouting and throwing things. Don't get me wrong, I am not saying that disabled people have to go through a lot of bad experience just to educate us normies. and I am not saying anything like "oh, you're disabled, well...take it easy!" I can witness every day, that sometimes it isn't. And even though I meet people with all kinds of disabilities, I do not necessarily want to be in their boots. But if I should ever be one of that "one out of seven" Lady Bracknell mentioned in one of their posts, I feel I am better prepared than anybody else. Something I am very grateful for. Sorry for the long comment!

Gimpy Mumpy said...

Hmmm....I'm tempted to post this one as "anonymous" but that seems a bit of a cop out so here goes it:

I became disabled three years ago, with the ups and downs and broken promises of surgery and treatments only to end up much worse after all of the medical interventions. For two years though my condition had leveled off a bit. A slow fall down the hill rather than a dramatic fall. I had convinced myself that I was completely comfortable and happy with my disability. I felt that I was completely ready for anything. And I was, until I had to talk with my doctor about a decline with nerve damage effecting bowel and bladder function. I was so calm, so cool, so collected. Right up until the point where I broke down sobbing that I 'didn't want to end up in diapers!' Where did that come from? My deepest fears, the bits I've been too afraid to face. I think that large dramatic incidents can be easier to deal with than these incidious, slow break-downs of our physical selves. And the added guilt and shame of blurting out that tearful admission to my doctor was so much worse for it. She never expected it from me. I've been through so much already. I'm supposed to be the strong one.

Sorry to ramble, I do hope the best for you and the situation at work. Remember it's ok to feel angry or upset. It's part of what makes us human :)

Katie said...

Gimpy Mumpy is right there, we all can get angry or upset sometimes, and it's a fact of life. You have do things that you enjoy to help you calm down and talking to someone about your fears, experiences and feelings is the best way of coping with how you are feeling.

Once again, good luck Damon.