Whenever you get the sense of someone looking at you, it immediately triggers a vicious cycle because the condition is stress related. The level of its manifestation is stress related. So at the end of the day, or if you’ve going through a stressful period, it’s much worse. And the fact that it’s much worse, makes it much more stressful. So going out was always a challenge. I wouldn’t say it’s been reduced to the minimum, but it was always a mental decision, of “all right, I need to do it”. Be as confident as you can. But there’s always this niggling voice at the back of your head, saying, you look funny.
It’s just, people are looking at you, and they’re saying, “is he, is he alright?” or “is he, is there something odd about him?” There was something odd, there was no two ways about it. There still is. But today, it’s such a relief compared to what it was. I was like... it’s incomparable so… back then it was like affliction in my mind.
There was a horrible self image. I remember after the second successful operation, going to, at R’s first birthday we went to the, to the London Zoo. And I looked at the pictures and there was a picture of me carrying R on my shoulders, and instead, it was a still picture, it wasn’t a video. I looked at it, and thought for the first time in my life, this picture looks like the picture of a perfectly abled person. There was such amazing, it was like, I’d never seen a thing of myself, in previous pictures there was always something abnormal about my posture.
At our wedding for instance, I didn’t want a video camera, because capturing me on video was always unbelievably difficult to see. So I don’t get, very few homemade videos. There wasn’t an official video, photographer. And even in the stills camera, even in the stills picture you can still see that there was something abnormal about my posture. And I had tremendous pain and tremendous stress. Also stress.
