My 100% is Actually My 500%

Writing has felt so intimidating to me over the past few years while I navigated a lot of intense life upheavals. But I really miss it – and you all – a lot. It’s meant more than I can say to see people are still visiting the site… There are still a lot of views every day despite my lack of posting. Like a lot a lot. 😳 But in some ways, that’s also added to the pressure I’m putting on myself.

I’d like to try posting more casually, with less pressure on myself to get things “perfect”. Sometimes… good enough really is good enough! If you agree, it would mean a lot if you interact with this post by liking it or leaving a comment. That way I can remind myself that something truly is better than nothing, and that a short or “imperfect” post is still valuable.

Autistically,

Alex 💜

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My 100% is Actually My 500%

There is a unique and devastating grief I tend to feel after big days and events.

Since January, my work has been organizing a large-scale, city-wide event and I’ve been responsible for a lot of the behind-the-scenes coordinating and organizing.

This included efforts to make the event the most accessible it’s ever been – including my second year hosting a Sensory Support Space (Let me know if you’re interested in a post about that. I have a lot to say about it!) It’s an event that means a lot to me, and to my intersectional communities.

But inevitably, today I feel that all-consuming grief. And — like I mention in my post Navigating Autistic Grief & Anger — I somehow always manage to forget how much I struggle to navigate grief.

It’s the same grief I felt in college needing to have accommodations to work from the floor when needed. To have campus security bring me to and from classes. To spend 95% of my time trying to just do my best while doctors tried to figure out what was wrong. To have to wait for football players running down the halls to catch the elevator with me because they were late, and I was struggling to stand. Getting invites out and knowing that no – if I want to pass my courses – I literally could not.

It’s growing up undiagnosed and knowing you’re very different from your peers in so many ways, but you don’t know why. It’s the school nurse gaslighting you and calling you a liar when you’re overstimulated and in pain and confused. It’s watching friends get “perfect attendance” rewards when you’re just struggling to get through the day.

There’s a special type of grief when your 100% is actually your 500%.

When you can’t go out and party or celebrate with your coworkers after 6 months of planning together. (To be clear, I’m sure everyone would have welcomed me and tried their absolute best to accommodate me — I was just at the point where I literally was in able of anything other than staring at my ceiling in the dark.) But there’s that grief when you can’t do the post-event bonding to celebrate and hear how everyone’s day went. You can’t blow off steam together.

And you can’t bounce back the next day. You pay for overdoing it in full body pain and nausea and vertigo. And you pay for it for a very, very long time. Like weeks of time.

It’s isolating and lonely and it’s no one’s fault. Not even my body. It’s just doing its best. I’m just doing my best. And that’s the biggest grief.