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.