People find it impossible not to stare at someone who looks different from what they normally expect. P. T. Barnum made a lot of money by exploiting this normal human tendency. Initially, I used to be disconcerted by the stares but now I am quite blasé about them.
When people see me for the first time, they are not sure how to interact with me. Perhaps they had thoughts similar to that of Bertie Wooster when he escaped from some disaster. ("There, but for the grace of god, goes Bertram.") Old people will stand some distance away from my bed and stare silently at me. Many of them would have dandled me when I was a child and would not have expected a situation like this.
In "Last Chance to See", Douglas Adams describes the aye-aye of Madagasar :
The aye-aye is a nocturnal lemur. It is a very strange-looking creature that seems to have been assembled from bits of other animals. It looks a little like a large cat with a bat's ears, a beaver's teeth, a tail like a large ostrich feather, a middle finger like a long dead twig and enormous eyes that seem to peer past you into a totally different world which exists just over your left shoulder.
Some people adopted the aye-aye strategy when they met me and carried on a conversation with someone behind me. Looking directly at me will mean asking me some questions for which they will not understand my reply. So how do you look at me without looking at me? Imitate the aye-aye!
You don't exactly become an unperson when you can't move or speak but you tend to become part of the décor while conversion flows about you. At first I used to feel uncomfortable but nowadays I prefer to be ignored because I won't have the hassle of having to think of how to respond without being misinterpreted.
Sometimes people will come into my room and stare silently at me without speaking to me or to anybody else. I will wish someone will say something but I will only be met with silence of the sort which I have seen being described as deafening.
Kesu, did not know you are a Douglas Adams fan. Perhaps his greatest impact on me (via Last Chance to See) was his demolition of the popular myths reg the role of missionaries in poor countries.ReplyDelete
On topic - you are underestimating the impact you have on your visitors. In most cases, I think they are too stunned to react properly. I will go one step further and say you are underestimating Jaya's impact as well. One of our common friends (to remain unnamed here) once told me he did not call her because of how difficult he found it to talk to her, how helpless he felt, etc. I said I don't give a sh!t, call them because it is not about you but about them. Wrong of me, but you get the point. Oops, I just realised I haven't called you in a while! Will do so very soon.
Okay, sorry for the long one, but at least you cannot accuse me of not "talking" to you :-) Keep the posts coming. Without exaggeration, I find it very enriching to read them.
The reactions are obviously because people did not know what to expect. After a few visits they are normal after seeing that Jaya and me have adjusted better than expected. And my views of the reactions are a lot different now from what they would have been ten years ago when I was also dazed. Time, the great healer, has been at work.
I am from the UK and I have just read your blog after Googling Julia Tavalaro.ReplyDelete
I was originally searching for information about cochlea implants and then somehow ended up reading about direct brain implants and consequently locked-in syndrome.
I remember reading The Diving Bell & The Butterly some time ago, and I was struck not only by the story told, but also by the beautiful prose which was so evocative.
Thank you so much for your efforts in writing this blog, I hope you will continue to do so. Peace.