Wednesday, 28 July 2010

A whinge seems overdue!

With my speech now completely unintelligible, I really don't like meeting people. This applies not only to strangers but even some people I know who I don't see very often. I have mentioned before about being treated like an idiot when you are in a wheelchair and can't speak, but I am not referring to that here. There is no criticism here. The issue here is mine. I dislike what I have become. We all know that MND only has physical effects but much of what defines you is physical and it is certainly 99 percent of how other people perceive you initially. Most people are put into an uncomfortable position when meeting a disabled person, they don't know what to say either verbally or with body language. They are no longer in their comfort zone. I was exactly the same. Every disabled person must be aware of it and most will probably do as I did and diffuse any awkwardness by acknowledging their disability, even joking about it. Thereafter most people are able to relax and will interact normally. The problem I now have is that those techniques are no longer possible, well certainly not as an instant response. If I have my communication computer with me and I have an opportunity to type some witty dialogue then maybe I can start to get them to see just a glimse of the former Steve Evans. But in most situations I can only do my lopsided smile and grunt. And how can you expect them to respond to that?

My recent experience of meeting F1 driver Jenson Button was a particularly frustrating example. Having come over to me specifically and saying hello, my response would have quite understandably have left him with the impression that I had been brought along for a day out of the care home, having been dressed in my 'special racing car' shirt because "you might meet that man off the telly, you know, that one that drives the fast brmm brmms, you like him don't you ". I am trying to make a joke of it now but I have to say it was acutely embarassing and frustrating in equal measure.

Even for people that knew me pre MND I think it is difficult for them to convince themselves that inside the wasted body that they see slumped in a wheelchair, behind the gaunt face of a virtual mute who struggles not to drool, there is me.

There are only a few people that still talk to me like they used to. This isn't a criticism of those who don't and can't. I just hate the fact that I am becoming a stranger to people I know.


Deirdre said...

There is not much to say except how crap is this for you? Have to say I think you look pretty good in the photos Steve, if you don't mind my saying so, and although I have not had the pleasure of knowing 'the former Steve Evans', I'm really pleased I've met the present one. Jenson Button was the lucky one to meet you.

Anonymous said...

What can I say to this except that having known you since literally the day you were born you will always be "Steven" to me. I know that when we come to see you next week it will be frustrating for us all that we can't talk as we would once have done, but you are still Steven and to me always will be. Love Christine

Graham said...

Hi Mate
Still reading the blog, still listening to you, even if it is not in person
It was good to talk in person in April, we still know you are there, the "old Steve" is still present, especially when you comment on my language.
Anyway Steve is Steve, no change for those of us that have known for for a year or two
Take Care mate
Hope to catch up soon

Anonymous said...

Well thank goodness for your blog and the effort you take to write it. There you are, every time I read it - intelligent, passionate and very much YOU. Anna P

rachelridley said...

Steve. I can only imagine how frustrating and down right shit it must feel. Your personality, insight and humour shine through in this blog and, knowing how much effort it takes to write, we appreciate every post. Small consolation but Steve Evans (both former and current) very much still talking through here. xxxx

Anonymous said...

Steve, the frustration must be unbearable for you at times and I don't feel I can add anything to these well put comments regarding your wit & personality in this blog. We know that although your body has changed, Steve is the same and that you are still 'you' in there; we just wish that we were better able to interact with you face to face as well.
Hope to interact again soon.....
Phil x

Anonymous said...

Hi Steve,
Greetings from Portugal, I am still reading your blogs and you sound very much like the little "Shit" you akways were, in the nicest possible way. Your thoughts written here are in exactly the same way as your spoken words were so under the skin you are the same Steve!!
Take care mate I know how difficult you must be finding most things, you are in my thoughts and I send you all my love. Gary

Anonymous said...

Hi Steve, reading your blog is a very insightful experience. You are absolutely right that none of us can really know what it is like to be trapped in a body that doesn't work but you definately give us much food for thought. Really sorry that you are feeling so trapped, I wish I could wave a magic wand and give you back your voice. You do shine through your blog and I hope it is therapeutic for you to keep on writing. Hope to see you again before too long and keep writing. lots of love Rachel B xxx

Anonymous said...

Hi Steve,
It never crossed my mind that you had changed from the fabulous guy you always have been. Why would I question it?
Through your blog, if anything, I have certainly got to know you better because you were never one to talk so eloquently about your feelings before the MND. You are a master of language and if you didnt occasionally have a rant you wouldnt be human.
Please use your blog to curse this most shit of diseases. It is your blog after all.
We think of you every day , Laura