Coming Out

First things first — I got my visa! Leaving for Spain in 10 days — it’s seriously coming so quick!

Second, I’m spending the week at my alma mater (weird! I’m a college graduate!), mostly to see and spend time with and say goodbye to my weird, beautiful friends.

IMG_0615Specifically, these friends.

Lastly, I’ve decided to be brave and make this blog public, which also means ‘coming out’ about having narcolepsy. It’s terrifying — I would much prefer to maintain a carefully curated Instagram or something similar, something that I can control — choosing honesty is such a difficult thing to do.

But I’ve spent a long time trying desperately to be normal, and that didn’t work. As my narcolepsy got worse and worse, I would sneak off to the bathroom to have my ‘episodes’, on the floor paralyzed by cataplexy or using the toilet as a pillow. I would walk to and from classes, hearing things that weren’t really there and seeing demons out of the corner of my eye. I would spend all night gripped by horrific, violent nightmares that sometimes didn’t end when I woke up, and then in the morning I’d have to clean the tear tracks and scabs on my face, because I would scratch myself when I tried to wake up from the nightmares.

It felt more and more like I was living in a foreign country, but not a cool fun one like Spain — it was more like everyone around me was speaking another language and abiding by a set of rules that didn’t seem to apply to me anymore. I wanted to fit in, but my world looked different from the one everyone else lived in, and I couldn’t tell if I was doing it right.

But that’s okay. That’s why it’s important to make this blog public. Narcolepsy is not a small deal, and it’s not a joke. It changes things.

My friend said something profound to me the other day. I was telling him that I was afraid of having cataplexy attacks in public and freaking people out, and he told me, “Don’t worry about it. People with disabilities exist, and people with narcolepsy exist, and normal people people want to ignore that. So many people with disabilities hide what’s going on because it makes people uncomfortable, but that’s why you need to be an advocate. You need to be open. Live your life, and when you have cataplexy, you’ll be educating people. You exist, and disabilities exist, and people need to know.”

I think he’s completely right, so it’s time to make this blog a little more visible. It leaves me more vulnerable, but our Internet-driven, image-obsessed world could use a little more vulnerability, I think. And honestly, I’m tired of hiding in the bathroom.

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