Living in the 1% club

Living with facial disfigurement isn’t easy. I say that with the benefit of considerable experience. And even now I have my moments, on certain days, at certain social events. And it can happen quite out of the blue. But it doesn’t limit me in the way it used to because I have learned to park the problem in my own way, to work around it if you like.

So when Trish and I met our daughter, Sarah Jane, in Manchester recently, I didn’t take any notice when, after I went up to the bar to order drinks, her boyfriend joined me. It was only afterwards that I discovered Trish had asked him to because ‘Tom doesn’t like standing alone at the bar’. Which is true, normally. It’s one of the little quirks I still have, that I am occasionally more aware of what I look like and how others may view me, although it’s fair to say I was in terrific form in Manchester. My blog had received a fantastic response so I was buzzing. I was in my comfort zone and oblivious to strangers.

And yet, Trish was right. I still have moments of panic when going into a roomful of people; still am wary about plunging into shopping centres, or walking through town. It doesn’t really stop me from going out, but it is still there in the back of my mind, something you have to deal with each day and learn to live with. And I know these moments of hesitation are ridiculous given all I have been through, but the thoughts still follow me.

I remember saying this to some very old friends recently and they were quite surprised. I think it’s best to be candid about those daily blips because so many others are in the same position. There’s a huge difference in living with facial disfigurement if you have a loving partner by your side who understands what makes you tick – and what doesn’t. It makes life’s challenges a lot smaller and less intimidating.

I was asked in a radio interview the other day how I am now in terms of facial disfigurement, and I replied I’m about 99% there. That final 1% will probably always be there, but ensuring it never becomes any bigger is the key to leading a fulfilling life. Acceptance brings happiness. And that’s where I am now. Ensuring that 1% never gets bigger and, possibly, diminishes over time. I’m still a work in progress.

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