The Fear

Hello my lovely loves,

Get me, posting twice in the same year! Who is she??

In a way, this is kind of a follow on from the last post. I've been trying to send out my story to different places in an attempt to get the word out about Longmarsh data centre, and, while I think it's really important, with that has come The Fear.

I've heard a lot of discourse online recently about how disabled people are punished for having fun. How if they do anything other than visibly suffer (especially online) then the price they pay is the belief of the public in their disability or illness. I'd be lying if I said that doesn't bother me too.

I really only do photos for birthday, Halloween, and Christmas, as that's the only time I dress up. Three days out of a whole year. This year I turned 40, and I decided to go all out. It's a big birthday, and I wanted to celebrate as much as I could, even if I had to pay for it later (spoiler alert: I did). 

I planned my outfit meticulously, my parents organised "tournaments" in the garden, and although I couldn't get to the Ren Faire as I really wanted, we made as much as possible of it come to me. I dressed up, I played games and I took pictures so I could remember it.

And the whole time I worried that when I shared those pictures people would think I was faking. Even though I knew how I had to do my makeup in stages, and how I had to sit down for most of the games. How despite this I only managed half an hour of them before my legs turned to jelly. How many naps I had to have throughout the day to make it work, and how many days I spent in bed afterwards recovering. How I couldn't invite any friends. 

I posted them anyway because I want to keep those memories. Because they keep me going, and it's not fair what someone might think take that from me. But it's hard.

Often, I'll end up posting an aftermath photo because it makes me so anxious to leave only the good bits. I have such mixed feelings about those. They're good because they're honest, and they raise awareness, but I also feel like I'm trying to prove something I shouldn't feel the need to. 

I hate that feeling, and to be honest suspect I'd post more everyday photos if I didn't have it. But this is the world I live in, and I need to be practical.

I tried not to do it with the Halloween photos this year. I spoken before about how important dressing up for Halloween is to me, partially as it falls the day before the anniversary of my falling ill. A pick-me-up when I need it most.

It's particularly difficult because there have already been comments about my Halloween costumes. About how "amazing it is" I "always have energy for that". That hurt. That really hurt. Not only because it's not true, but because it was a gross misunderstanding of my character from someone who should've known better. Who I thought did. 

I didn't really do proper costumes for a couple of years. I wasn't really up to it physically, but also... those words had an effect. It felt like all the joy I'd been relying on had been sucked out, and I was just left with the anniversary I lost everything.

It took a while to find the courage to take the joy back. So I didn't post the aftermath. I didn't mention the breaks or how it had to be done in advance in the posts. I just did it. And then I needed to send my piece about Longmarsh out and the fear came flooding back.

I want it to get published. I want people to know about this ridiculous hyper scale data centre plonked in the middle of several tiny villages and the terrible effect it'll have. But then people will see me and they'll judge me because they think I'm not Disabling Correctly. And that can have real world consequences for someone like me.

But I sent it anyway, even though I'm worried. Because I know I'm telling the truth, and I still need to be able to look at myself in the mirror at the end of the day and know I did everything I could to help. And then go lie down and nap. Again.

H