But you don’t look dead

In the 80s, HarperCollins decided to encourage children to read by scaring the hell out of them. The scary stories were cleverly disguised with “I Can Read Level 2” emblems. To be fair, I was the type of kid that got nightmares from Nancy Drew. However, I never suspected such simple words could wreck me for so many years.

I wouldn’t be surprised if millennials’ trust issues stem from one story in particular: The Green Ribbon.

Listen to the story with pictures from the actual book.

Basically, a woman named Jenny wears a green ribbon around her neck her whole life and won’t tell her husband why. When she is very old, she removes the ribbon and her head falls off.

No explanation.

Children need explanations to sleep at night.

Until that moment, I hadn’t worried about anyone’s head falling off. Would someone do that to me? Could I trust anyone? I became nauseous every time my mom put on a turtleneck.

Today, I no longer worry about anyone’s head falling off.

I’m too worried about my own head falling off.

You see, I finally understand Jenny, thanks to Ehlers Danlos Syndrome. I am able to look past the fact that she is dead and relate to her cranial instability. After all, I’m half-dead most days anyway.

I have great empathy for Jenny. Even if she did tell people about her cranial instability, no one would have believed her anyway. Doctors probably would have blame it on anxiety.

In fact, I wish I could commiserate with Jenny about the pressure to be alive. We would probably be great friends. She would have understood the complications of my cerebrospinal fluid leak and fear of sneezing. We would have rested our heads, while binging our favorite TV shows. I wouldn’t care that she was dead, as long as she laughed at my jokes.

Jenny would teach me the importance of having boundaries, that it’s not always necessary to disclose my medical conditions. I would tell her Alfred is an ableist asshole, and kinesiology tape is a thing now.

Jenny would never tell me, “But you don’t look sick.”

And I would never tell Jenny, “But you don’t look dead.”

Leave a Reply