How it is.

I ‘belong’ to a Facebook Group for people with SCI – Spinal Cord Injuries.

I guess that really it’s a support group, as well as a source of information from those who’ve had this shockingly bad disability for longer than yourself.

Today people wrote in about  their perception of the prevailing attitudes of the ‘normal ‘ population to those in the group, that other people are ‘nosey about their injury’ , and even ‘want to take the piss’.

 

What’s obvious to me, is that there’s a lot of anger out there, from people with SCI’s.

My injury was my own fault , I have no one else to blame.
If I did, perhaps I’d be angry too.

I’ve not met anyone in the last 2 years who I’d say was ‘nosey’ or ‘wanted to take the piss’. I wonder if that’s really how it is, or just how some  imagine it to be.

SCI is awful, and not like the ‘other’ reasons people end up in chairs, though MS and MND, and many other conditions are all awful too.

We are all going to ‘cope’ in different ways, and that’s up to the individual.
For me, it’s not by being angry at other people. It’s bad enough as it is , without that conflict.

I wrote  :

“I’m surprised to read what people have written on this topic.

Before my injury I was a big, strong guy. I was always the first to offer to help a lady carry her heavy suitcase, or pram with baby, up stairs.

I was never glared at, or abused for offering to help make life easier for another person.

In my job, I’d regularly meet people in chairs, and make a point of asking why they had one.
I don’t recall ever having an offended response.

I don’t like being paraplegic , I don’t like my wheelchair , and welcome people knowing that it hasn’t always been this way for me, that I was almost killed in a crash 2 years ago, and that that same crash has left me paralysed, and that I really don’t like it.

It’s not ‘normal’ to be in a chair.. And it’s natural for people to wonder why.
If you see someone with their arm in a sling, don’t you ask how they hurt their arm? Isn’t that a perfectly normal question?
So why ignore the wheelchair question?
Don’t we ask each other how we were injured? Can’t other people that are walking , ask us?

Being in a chair is crap.
Being in a chair and angry is worse.
Raging against ‘normal’ people is not the way forward.
Rejecting polite help is not the way forward. If someone asks me if I need help, I’ll generally say yes, and thank them.

I’m far more surprised if people watch you struggle and don’t help. I want to say sometimes ‘ can’t you see it’s hard for me, why haven’t you asked if you can help’.
I know people want to help, but often they don’t because they fear an angry rebuke.
That’s crazy.. It would never occur to me to do anything other than smile, if someone offers help. If I choose that I don’t need the help, then I can say, and still say thank you.

Being angry and hostile is wrong, and gives chair users a bad image.

I tell my mates that they should offer to help me, and anyone else in a chair.
I really hope that they don’t ever encounter anybody in this conversation who might undo my advice to them, by being offensive to someone trying to help.”

 

I don’t know if my own approach is ‘right’ or ‘wrong’.   Who am I to say ?

I do look in the mirror sometimes ( when it’s unavoidable ) and feel heartbroken that this happened to me, that I can say.

For the last 12 hours my bladder seems to have lost all control, so just leaks pee. There’s limited point in dressing, only to make a mess of my clothes, so I’m just in my chair, with a towel over me, to soak up any leaks.

It’s not glamorous, this stuff, and could very easily unhinge me.

I constantly have to seek the ‘bigger picture’ and justify my own worth to myself, but it’s not easy.

 

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