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Jackie Schuld Art Therapy Blog

An Autistic Plea to Migraines

Dearest Migraine,

Today I called you names behind your back. I told my sister you’re a pernicious little fucker. I was trying to be funny and accurate at the same time.

I actually had to look up pernicious after I said it. That happens a lot. A word just pops out of my mouth and I later wonder, “Was that even the right word?”

Pernicious means “having a harmful effect, especially in a gradual or subtle way.”

God damn, I nailed it for once.

You are a pernicious fucker.

Yesterday I had a mild headache for most of the day. More like a sinus headache that I couldn’t really get a hold of. I took a 45-minute nap around lunchtime and that provided enough relief to make it through the afternoon.

As the evening came though, it got worse. When my family came home and more noise, movement, and evening events happened, the headache ramped up into more of a tension headache.

I recognized it wasn’t good and I tried to stretch out my neck and back. I know you sometimes start out as a tension headache. There is a small, imperceptible line between a tension headache that will go away on its own and the beginnings of a migraine.

If I can sense you are on the way, I will take some ibuprofen, a hot bath in the dark, and promptly go to bed. That is usually enough to ward you off.

I did not do any of those things last night. I thought I could rub you out and sleep would cure it.

Illustration by Jackie Schuld

Oh was I wrong. You woke me in the middle of the night, constricting my brain with every heartbeat. The slightest movement sent jarring pain, enough that I wasn’t even sure I could open my eyes.

My sensory system was immediately overloaded and the slightest movement or noise increased your intensity. I was finally able to get up and get to my medicine. I turned off the AC on the way (the blowing from the vent was aggravating you).

I took my meds and tried to just lie on the couch breathing through the pain, trying to relax everything in my body as I did.

Do you enjoy this? Do you like seeing what control you can have over me? Are you secretly rooting against me as I breathe out tension and you dissipate?

Or are you my friend? Are you there whispering comfort? Are you there to encourage me to release tension? Are you there not out of malicious intent, but of concern for my well-being?

I cannot think about these questions when you have taken over my body. Any form of thinking makes it worse. I can barely speak when you have my head in a vice.

My partner woke up at some point in the middle of the night and came out to find me. Luckily, we have a code word for such situations. It’s called, “Code 4.” This means, “I am in deep pain, I will be fine, but please leave me alone and don’t talk to me because it will make it worse.”

Don’t get too egotistical, we did not develop this code for you. It was actually developed thanks to my digestive system which flares up on occasion. This is part of the beauty of living in an autistic body. There are a multitude of co-occurring conditions and experiences. Stress plays a huge role in flare-ups. Trouble is, we cannot always control what our body interprets as stress or not.

Hence, the code words. Code 4 came in handy for you last night. Are you proud you merited the most severe code?

I will say I’m glad you don’t come around often. I’ve heard of people who you visit regularly. Those poor souls.

I’ve also heard of people who you treat far worse. I’ve only thrown up once because of you. Let’s not do that again.

I wish there was a better way I could understand you. This is probably my need for control. I would like to prevent you from returning. If that’s not possible, I would like to predict when you are coming and take appropriate measures. I’m very lucky I didn’t have to work today as I recover from your grip.

I’m still slightly terrified you’re looming in the background and are ready to take over again.

You probably thrive on fear though. God, what doesn’t? Me, I guess. Haha.

I’m not sure if you’re willing to have a dialogue, but I’d really like that. I’ll even pay for a mediator if that would make you more comfortable. Whatever you want. Let’s try to come to some sort of resolution, please.




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