The Best Thing About Spaniards

I really, really love living in Spain. It’s wonderful — my only regret is that I can’t participate more fully in la vida española (thanks, narcolepsy). 

I know that it’s not good to make generalizations about an entire country, blah blah blah, but since day one I’ve been constantly struck by how generous Spaniards are. They give things away without a second thought, and without my asking for anything!

Here is a sampling of the things I’ve been given during my two months here in Spain:

-An absurd amount of free food, drinks and coffee for no reason;

-It was drizzling one day when I went to the bar, and one of my waiter friends disappeared briefly and returned with a fancy umbrella of unknown origin, insisting I keep it;

-Juanra, my favorite teacher, gives me plums, bread and, most recently, a map of Lisbon, Portugal, where he visited on a weekend trip;

-In Segovia, not only did my friends pay for my cochinillo, but one of them also bought me a piglet-shaped magnet/bottle opener as a souvenir;

-Today, I visited the bar, and one of the regulars, a young-ish dude with wild dark hair and bright blue eyes, produced a potted plant out of nowhere and gave it to me as a gift. I thought it was a joke, but he insisted that I keep it. IMG_1549

Thank you, bar regular!


Sleep Study in Spain

There’s only one medicine, sodium oxybate, which treats all the symptoms of narcolepsy — daytime sleepiness, sleep attacks, REM intrusions, the whole deal. I’ve never tried this drug because it’s very tightly controlled, but it’s life-changing for so many people with narcolepsy, and honestly, my life needs changing. The medication I’m on doesn’t cut it, and my quality of life is poor. 

So, I’ve started the process here in Spain to get sodium oxybate. The first step, after an initial appointment with a sleep specialist, was to undergo a sleep study to confirm that I have narcolepsy, which I did this past Wednesday and Thursday at the Institute of Sleep in Madrid. I’ll write more about my experience during the sleep study later — for now, enjoy this picture of me all wired up!

(Actually, after this was taken, I got tubes in my nose and electrodes on my neck, chest and hands, too. I felt like a cyborg!)

You Are Brave.

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.