I have a confession to make.
So many people have told me that I’m brave for moving to Spain. It’s something I can count on, the part of the conversation where they ask, “¿Estás sola en España?” — Are you alone in Spain? And I say yes, and they say, “Joder. Eres valiente.” — You are brave.
And I never know what to say in response, because here’s my confession: It’s really not that hard.
Having narcolepsy is a thousand times harder than living alone in a foreign country, so much harder that it seems almost stupid to compare the two. Living in Spain isn’t difficult the way having narcolepsy is difficult. Life in Spain is challenging, sure, but it’s the good kind of challenge, it gives you depth. You learn to survive on your own and speak a second language and make friends and navigate a totally foreign culture. That’s challenging, but that’s growth.
You don’t grow from having narcolepsy. Narcolepsy keeps you flat, isolates and humiliates you, keeps you from thinking and laughing and speaking the way you normally would. It consumes you, you spend every moment thinking about it, because you have to. Do I have enough energy to go to the grocery store? Will the next fifteen minutes be good minutes, can I use that time to cook lunch? If I take my medicine now, will I feel okay when I get to school? Careful, don’t laugh, you’ll have cataplexy. Don’t feel frustrated. Don’t get excited.
“You’re shy, aren’t you,” people tell me here, because I don’t talk much, I don’t express much, I’m reserved. But I’m not shy. If emotions gave you seizures, how much would you let yourself feel?
Narcolepsy steals everything it can from you, and there’s nothing you can do about it and no words that make it less painful. There’s nothing redeeming about having narcolepsy.
My mom and dad have both told me, on separate occasions, that if they could be the one with narcolepsy instead of me, they’d do it. I know the proper response is for me to say, “No, I could never do that to you,” but honestly, if I had a choice, I would let them have narcolepsy and I would be the healthy one. It’s horrifically selfish of me, obviously, but having narcolepsy is torture, and I don’t want it, and if I had a choice, I would pass the burden on to someone else.