Had a bit of a problem lately with blatant disability prejudice. Unfortunately, it's been from it's from some who really should know better. They should know better because I'm not one to be understanding to those who've known me for years.
Which is why my friends of many years know who I am, what I am, how blunt I can be, and how unapologetic I can be be. What you see is what you get. I realise that sounds awful, but it isn't. It works. It's a bit like winning the lottery in reverse. You quickly find out who your friends are.
How do you expect a multiple stroke survivor to look? Or act? Perhaps paralysis down one side? Yep, have that, to a degree. For some of us, with a lot of hard work, it can be gradually overcome.
Drooping mouth? Yup. Though its never been a big problem. I tend to dribble, and drop my food on my lap because my coordination is rubbish. I have a square cup, bone china, because it's easier to drink from a corner. I have a little trouble swallowing, so when I do eat (I never feel hungry), family won't let me eat alone.
Walking difficulties? Hell yes. I need support. Could I use a crutch or walking stick? Waste of space. I don't mind wobbling around for a little while. I do have them tho'
Think about it. If one side of your body doesn't behave, in my case, the right side, then the walking stick, to support ones right leg, needs to be supported by ones right hand. Which is cool for a short while, in my case.
I won't go on about the incontinence.
But here's the Biggie. Can stroke affect your intellect? Sometimes, yes. It's a hard one, because only those who know you, know if you are any different than the way you were before. You may not know yourself that you are any different, or to what degree. But you should be aware of the possibility.
I'll leave it there for now :) But I'll tell you the hardest part. Being 'different'.
5 comments:
It's difficult sometimes to talk about disability and respond in a way that doesn't patronise you. So I'll just say what I think instead (which has often got me into hot water in the dim and distant past - not so much now.) Disability frightens me. People with disability frighten me and especially where mental health is concerned. I don't know if 'frighten' is the right word, perhaps wary because I don't how I would cope. Can I communicate? Will I say something inappropriate? Will I patronise? My point Wheelie (I think) is that I wholly agree with you that actually, what lays behind the physical? A person. A human being. I learned a lot from my grandfather who had a mild dementia before he died and I sort of cope better now than I ever did. I suppose I have matured somewhat and readily accept people's disability now, but it took me many years to get over that... reluctance, the reluctance to engage for fear of my own inadequacies - not the other person's disability. Thank you for sharing these thoughts in an honest and open way. You tell it as it is my friend - I thank you for it.
Bear and I agree with you.
Even now, the label disabled makes ME uncomfortable.
But I get a sharp reminder when I become beneath notice. Now that, really winds me up, despite my best efforts. I'll probably blog about that eventually.
Someone who is uncomfortable at least acknowledges one's presence. I get irate when someone is stood in front of me and discusses me as though I'm not there. Or hands Bear a bill for something they've bought, unasked, in front of me.
And I handle the finances. Damn good at it I am.
All in all, unimportant in themselves - but, well, y'know :(
Drew, I can relate to nearly all of what you're saying here. If you go through some of my posts I say so often, I'm still me on the inside, just in a very different packet! But even people who've known me for years just don't get it and then it hurts like hell...
Stay strong...my love to you. xx
I guess I'm just getting frustrated - I do sometimes Elizabeth :(
That's ok. Give yourself permission to be frustrated...you have every right to those moments. As with me, a few short minutes changed your life for ever and nothing can change that or give you back what you had. But also celebrate and embrace the gifts that you've been given through your stroke; insights and experiences that other people just don't have and the wonderful, amazing people that you've been brought into contact with.It is through those experiences that you - and I - are given the privilege of influencing future perspectives on disability and the effects of stroke.
RLS' reaction of being afraid of disability is common - it is human nature to be afraid of what we don't understand - and it is through folk like you and I breaking down barriers that that understanding will come. Its a bit like digging a pipeline with a teaspoon at times, but it will happen. I'm convinced that that our blogs are important tools in showing the way forward...x
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