Tuesday, 11 November 2014

The day after.

On Saturday I went to Mumsnet Blogfest. It's the third time I've been to this particular blogging conference, and it was excellent. Particularly the 5 minute Think Bomb from Francesca Martinez - "loving yourself in this society is an act of civil disobedience".

(You can read more about the whole conference experience on my main blog, Making it up

It made me think about my life post diagnosis. I'm still working through who I am - the answer is of course that I'm exactly the same person I was beforehand. But now I have a way to understand myself a little better, and with that. I can start getting a handle on how I can make my life a little easier. I do think a lot of my problems are external - as Francesca said, there's a lot of conformity required in day to day life, and that doesn't bode well for someone who doesn't conform naturally. But I can also refuse to have velvet in the house ;)

Anyway, on the train on the way home, I wrote something that I'm going to transcribe here, to share what the day after a big event feels like inside my head.


Waves and waves of sad. Post event crash. I'm fighting tears, and have been ever since I said goodbye on the tube.

Aware that I don't know when I will next get to just be with someone who gets it, who accepts me, who I don't have to explain to, although I can, although often explanations start with "do you know when" and become "yes but always" and "isn't that normal?"

So much of what is within me isn't normal, ordinary, average, usual. Typical. I'm not typical.

Neurologically challenged said Camila yesterday as she asked people not to take pictures. Did she mean by the pictures, is she challenged by people taking likenesses of her, or was she actually asking people not to use flash?

Imprecise. I am sometimes imprecise
 (and someone sneezed
   and I am derailed
    (on a train))
but more often than not that is my failure to understand the misunderstanding, not knowing what the gap is.

Because it's all obvious to me. All normal and logical and just because.

I know that other people don't cringe at the sensation of velvet flowing over their skin. I know this objectively. And yet I do not know how they can not.

Passing. I think I pass for normal pretty well. Particularly in short doses. And yet I'm also increasingly aware of how much effort that costs me.

And now I've run out of words.


Like I said, that was on the train on the way home on Sunday. I got in, grabbed children, and we went down to the beach for an hour in the afternoon sun, then home via the war memorial. I managed pretty decompressed by that evening, and even cooked dinner from scratch. Then however, I've found it very difficult to regain focus over the last couple of days.

I'm worried that if I post things like this, people will start to think I can't do things I absolutely can. I absolutely can come to a conference, talk techy, be interactive, helpful and so on.

I may not however have the first idea of who I spoke to by the end of the day. I can't easily track faces to names to online profiles - last year the bumpable badges were an absolute lifesaver.

I can do technical things with your website. I'm very very good at that. I'm not good at small talk, and I'm never going to find my funny online.

I guess if I want to be out, I just have to take whatever reaction to it comes.

1 comment:

  1. Hi Jax It was really good to meet you properly on Saturday from my viewpoint, you come across just as you do on your blog. You are the same person you always were, so perhaps the notion of appearing different and labels shouldn't mean anything? I say thank God for none of us being 'normal'. Maybe bloggers sort of attract others who are better at being by themselves in general. Don't know. Anyway, by declaring your concerns that people won't think you can do things - I think the opposite. They'll respect your integrity and want to work with you as they'll feel trust. By the way, you have a beautiful smile which comes across better in real life. I remember saying that on Saturday, but if you can never remember compliments like me, I'm also putting this in black and white :) x ps didn't get to see Francesca Martinez, but saw a clip of her at Blogfest and roared with laughter. Fabulous.


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