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Acceptence

Profound thinking happening again and I really hope other people stop, look, read and digest what I’m saying and start thinking the same way because this time, I think, what I’m trying to say really matters and really matters to us all.

I might not be saying it well but it comes from the heart.

So, here goes, here are my thoughts.

I have received some very bad news. The sort of news that hits you hard, takes your breath away and that you are uncertain how to deal with. I have learnt that one of my oldest friends died very recently and, despite the fact we had been talking about meeting up for a meal or a show for ages, it was always something we were going to do next week or next month or the next time he was in town but, that time never happened, we never got that chance. We were always too busy.

Then we both got sicker so we, were left with the chatting on the phone and messages on Facebook instead. Not the same as a face to face chat but better than nothing I suppose. At least we could spend hours gossiping, which we did,  but even so….

Then he got even sicker, which I knew about because he phoned me from his hospital bed, but we were still planning on meeting up when he had recovered. Because he was going to recover, wasn’t he? I’m not because my impairment is incurable but his wasn’t was it? But it wasn’t.

Just over a week ago, I received a phone call from his sister to tell me that sadly, he’d died a couple of weeks previously.

It was too late.

Now we’ll never get the chance to meet up properly ever again and I so regret that.

That meal we were going to have, that show we were going to see together, that happy reunion we were going to have will never happen now. We’d had plenty of chances over the years but we’d always left it because we were too busy and there was plenty of time. But busy doing what? Not doing the thing that should have mattered most, being friends and taking time for each other and sharing our lives with the people that matter, that’s for sure.

On the day I got that call I’d actually been checking to see if he’d posted on social media as he hadn’t rung for a couple of days and I was vaguely worried as I did know how sick he’d been. I knew he had a new mobile but I didn’t have the number and I’d thought about ringing the hospital and asking for him but, as I didn’t know which ward he was on it would have been unlikely they would have put me through and, as I’m not family, they probably wouldn’t have told me anything anyway. 

It’s not the first time this has happened to me either but, for some reason, this time seems to be particularly hard. Maybe because, unlike with the other people in my life who have died, he was younger than me – still in his forties whilst I’m in my fifties now. Maybe because we had been chatting on the phone only a couple of days before he died and ending our conversation with the well-worn phrase, ‘Chat soon. Sleep well.’ Maybe because, although we’d both known he was sick, neither of us had realised just how sick he was. Maybe because we’d always thought there could be a time for us to do our thing. Together. But that time never came and that’s so sad.

I didn’t even get the chance to go to his funeral to say my last goodbye because, by the time I got the phone call from his family telling me of his death, it had already happened and I’d missed it. Not that I think that I should have had special treatment, I was, after all, just a friend but it would have been nice to know. Not that I’d have been likely to have been able to make it due to my impairment but it would have been nice to have had the opportunity.

I think I’m going to become a lot more of a ‘live for today’ sort of person. I never want to find I’ve lost my final chance with anyone because I never want to miss out on a last chat with a friend or relative again – it hurts too much and, for the last time, goodbye my friend, sleep well.

And the whole Doctor Who thing progresses.

As I said in my previous blog, now we have a female Doctor, in the future I would rather like to see a disabled actor play the Doctor.

I think this would be good.

But, this has led to a long and involved discussion, on my favourite Social Media platform, ‘Facebook’, with several disabled people about the normalisation of disability. There’s a group, including me, who are saying that disability and disabled people should be celebrated and included and seen as just part of the vast panoply of human existence that is life and then there’s another group, people who are also disabled in some way, who are saying that being disabled is definitely bad and that an impairment or disability means that something is wrong. They are saying that, if they had the opportunity to become part of the non-disabled world then they would jump at the chance and grab it with both hands. They are saying that they would like to get ‘better’. For me, the question is better than what. Better as opposed to worse? Worse than what?

Well, for a kick off, I don’t see being disabled as meaning that there is something wrong with me at all. I just see it as meaning I am different and, as a result, I don’t want to get ‘better’ in myself at all. I want to see the world get better. I want to see society get better. I want to see attitudes towards disability and what disability means get better, but, I am someone who has become disabled, I was not born this way. Maybe my views would be different if I’d always had my impairment. I am someone who has travelled from the non-disabled world into the disabled community so I’m part of the group that can see it from both sides of the fence.

I was 24 when I was diagnosed with my MS. For me, my disability is not an impairment or something that is wrong with me, rather, it’s a failure by society to be able to cater for me and my needs and ior people like me. My MS is an illness that I contracted from who knows where which means that I have now lost the ability to stand and walk and look after myself on my own and has left me stuck in a bed most of the time and using a wheelchair to get around when I’m up instead of using my legs. It means I have carers coming in daily to get me up and wash me and dress me and feed me and cater for my needs and put me back in bed in the evening. It is a part of me but it does not define me. On the inside I am still the same me I’ve always been, I’m just me with MS as opposed to me without MS. The real me, the internal me that is ME, has not changed. I didn’t walk into my GP’s surgery the day I got my diagnosis as one person and come out as a completely different person. I came out as the same person, just as a person who now had MS and was therefore labelled as being disabled. That was all that changed. My label. The essential me was still the same.

The thing is though, is that the essential me has had to change over the years thanks to that diagnosis. I have had to learn to stand my ground and do my own thing my way and to fight for what I now believe to be right. I have had to learn to fight to be part of a world that was once believed was mine by right. I have had to learn to fight to be part of a world which, in some way, doesn’t seem to want me to be a full member of it any more. I have had to learn how to fight the urge to apologise for being me and having needs that are different and seen to be, in some way, as abnormal.

One of the questions disabled people get asked all the time is whether or not we’d like to be ‘cured’. Now this is something that must, in my opinion, has to be different depending on whether or not you were born disabled or if you became disabled later on. It also must depend on whether or not you experience pain as an upshot of your impairment. If you ask me, I don’t think I would like to be cured. I’m perfectly happy as I am. I’m not really in any pain, I just can’t walk or stand or look after myself any more. And, if the world was set up differently then that wouldn’t matter at all.

I don’t think I want to go back to how I was in my pre MS days because I like the me I am now a whole load better than the me I was before. I have met people since I became disabled that I’d never have met otherwise, done things I’d never have done, been involved with things I could never have been involved with, learnt things about life I would never have learnt about without that diagnosis. Before my MS came aong I was shy and quiet and a bit afraid of sticking my neck out and voicing an opinion but the disabled me with MS is confident, loud, not afraid to say what I think, able to hold my own in an argument and I think it’s the fight I have had to have with life due to my MS that has helped make me this way.

I’m not saying that my life as a non-disabled person would have been any better or any worse than my life as a disabled person but it would definitely have been different. Would that have been a good different or a bad different? Well there’s the question. I don’t know. All I know is that, one way or the other, it would just have been different and I’m not sure if that is a different I would want it to be.