The Accommodation I Wanted Didn’t Exist

Last month I went to a festival for the first time in probably close to eight years, and afterward I felt like emotional ghosts were chasing me.

What I first thought was that I felt regret.

You see, a friend of mine was performing and I really wanted to support her. But my body wouldn’t comply.

Festivals are generally not made for chronically ill bodies. They’re a riot of sensation, and my body started revolting within an hour of arrival. My muscles were locking up, tensing without my consent. I began to shiver uncontrollably, my nervous system going into overdrive. All I could do was try and breathe through muscles that refused to unclench, as I stared into the distance attempting to dissociate the waiting time away.

By the time she went on stage, my body had been waving a white flag I’d done my best to ignore. Her set was amazing. In the excitement of it, I pulled a second wind out of thin air, and I made it probably 20 minutes before we had to leave.

It was a fair choice health-wise, the leaving. My body was legitimately in bad shape by this point. But the day after, I began to berate myself in my regret that somehow I could have stayed. I could have found another spot where I could sit down. I could have powered through.

But these aren’t really regrets, are they? They’re me trying to negotiate away my disability.

The real accommodation I wanted was to have a different body.

We often only think of accommodations as ramps, seating, quiet rooms, shorter lines. But sometimes none of those are enough. Sometimes the thing we’re mourning is that no accommodation can remove the tradeoff.

Conveniently, after the moment has passed, these far fetched possibilities of sitting and powering through can’t be proven. My brain latches onto the potential, playing it on loop in a cycle of guilt and regret.

Underneath this feeling I’ve felt more times than I can count is a seed of something else though. It’s the feeling that I didn’t stand up for myself.

This is a common one for me. After suppressing what my body and mind need to feel comfortable, safe, and happy for three decades, it’s a huge unlearning process to assert boundaries and ask for accommodations. There’s a big fear of misunderstanding after being so often dismissed or labeled as difficult or overdramatic. After a while, I chose to stay silent. But now I can feel this silence in the tension of my throat, a painful burning knot that forms there whenever I choose not to say something again.

The feeling that I didn’t stand up for myself is one that has burrowed deep. It’s knotted up in so many moments over my life. I’ve replayed doctor’s appointments this way. Relationships. Vacations. Family dinners.

It’s a ghost that’s still haunting me. But it’s just a feeling, not even something based in reality anymore.

Because, in one way, I did stand up for my body that was hurting and beyond needing for me to give it a break. I left, and I went to rest it.

In the aftermath of the magic of witnessing even part of my friend’s performance, I started to doubt whether the moments of beauty were worth the pain. The two hours prior to her set waiting at the festival where I couldn’t stop my body from shaking and shivering despite the summer temperatures. The two mile walk out of the festival to get to the Uber pick up point. The three hour car ride home the next day.

I wanted more light to balance out the darkness. But life doesn’t often work like that, experiences that can neatly fit into one or the other.

A younger part of me still believes that if I had stood up for myself, I would have found a way to get both things. The concert and the lack of consequences. The joy and the absence of pain.

And that’s when I realize my regret isn’t coming from abandoning myself. It’s coming from grieving a limitation. Sometimes there is no version of the story where I get everything I want.

It turns out you can accept disability as an identity long before you accept it as a reality. That’s a much more painful acceptance.

Accepting disability as an identity mostly asks you to change how you think about yourself. But accepting it as a reality asks you to give things up.

One happens in your mind. The other happens every time your body says no to something you love.

The regret is almost a decoy emotion, concealing the deeper grief that my body asked for something that cost me something beautiful.

I’m trying to learn to dwell on the fun parts, even while my body continues to remind me of all the rest. It’s okay if I try this time and don’t quite make it. Because uncovering what was hiding underneath a feeling that has haunted me for 30 years, that’s the real magic.

I no longer think the regret will disappear. The bargaining probably won’t either.

There will probably always be a younger version of me looking for the story where I get both things. But maybe next time I’ll recognize her sooner.

Maybe instead of arguing with her, I’ll understand what she’s really grieving.