If you follow this blog, you’ll have noticed that this is my third post in a row about mental health. Since I posted that update back in April, things haven’t been running so smoothly. I’m not dealing with anything new. I just feel as though I’m dealing with everything all at once. It seems, now that I’m in a good headspace, my mind finally has the space to start unpacking, only there’s so much I’ve never been able to process before. And now it feels like my brain is trying to do it all at once.
The best analogy of how I feel would be a computer. You’re trying to download a large file or several. At first, it simply slows down. Then the other functions stop working. Before the computer eventually overheats and shuts down altogether. Up until last week’s seizures, I was in the slowing down phase but now I think I’ve moved on to the next step. And I’m terrified that if I don’t get my anxiety under control soon I’m going to completely collapse.
There’s so much going on right now and most of it is god damn good. But I just feel as though my brain won’t let me enjoy that. It’s now nine days since I had the seizures and I still don’t feel good; I’ve had a migraine on and off ever since. I feel so mad about it. Mad that things can never just be good. There’s always a catch.
I think one of the hardest things to accept about ongoing conditions is the lack of control and reason. For the majority of my life, I’ve been labelled negatively. I’ve always been seen as ‘bad’ or ‘naughty’. And I think the reason I accepted those allegations for so long was that they justified my pain. It explained why I had a messed up brain. And legitimised the punishment and discrimination I received. I guess, having a reason for my suffering was easier to accept than the concept that life is simply unfair. Answering the question, why me?
However, now that I no longer hate the person I see in the mirror, that protective barrier has collapsed. It feels absurd to even suggest that self-hate could be a good thing but in reality, it helped me accept the things I’m now struggling with. It gave me justification. Now I feel lost and just so hard done by.
This coming Tuesday, I’ll be speaking on a panel at the Autistica Research Festival. I’ll be discussing participatory science on behalf of the AutSPACEs project at the Alan Turing Institute, both as a participant and a researcher. This project is the big opportunity I mentioned a while back. Working on it this year has been brilliant for me (at some point I’ll write some ‘proper content’ about it all). I’m now ‘leading’ the moderation team and the amazing researchers I’m working with see me as their equal, even though I’m not technically employed. At the end of this week’s meet-up, they even left me in charge of the Zoom call.
I left that meeting in an absolute buzz. Admittedly I had drunk two coffees. But I felt so good. So seen. I felt validated and worthy as I do every time I work with them. But very quickly the dizziness kicked in and I felt useless again.
I’ve always been kind of scared of being seizure-free. Again, it’s weird. I used to think this was because epilepsy was such a large part of my identity and without it, I wouldn’t know who I was. But I realised a while back that it’s actually nothing to do with that. I’m scared of becoming seizure-free, building a new life for myself and then relapsing and losing it all. After all, it’s harder to lose something than never have it.
I know this talk on Tuesday is a big deal for me. Right now I’m freaking out about it but I know as soon as I log on and get asked to introduce myself the magical mask will come on. A switch will flick in my head and my natural talent for public speaking will shine in all its glory. That sounds egotistical but I have two natural talents: writing and talking. Ironic considering how much I struggle with casual communication.
However, I also know that the stress I feel beforehand will likely lead to more seizures. And I only just started drinking out of cups again. This is my reality. For no logical reason whatsoever, good is always accompanied by bad. No matter what, I’ll always be defined and controlled by my condition. And as much I love the person I now am. As much I hold pride in my strength and resilience. It just sucks.
One minute I’m on top of the world, engulfed in an urge to take a leap and grab hold of whatever is in front of me and run with it. And the next, I’m lying at the bottom of a deep canyon being smothered by pain and fear, unable to see beyond my trembling hands. That’s just my life and it always will be.
I want to make it clear I’m not writing all of this for pity. I hate pity. For so long that was the only form of non-derogatory attention I received. And to be honest I barely got that. I guess if you pity me, then what I’m writing is true. I am invalid and my life really does suck. As long as I don’t receive pity I can persuade myself the negativity is all in my head.
Thank you if you’ve read this far. That alone is positive validation. I write as a form of self-therapy and as a means for educating others. I’m not alone in my struggles and with COVID support is even harder to find. So if you know anyone who may be feeling similar things, share this and let them know they’re not alone.
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