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. 

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12 thoughts on “You Are Brave.

  1. Lovely and honest post, Elaine. I’m so sorry narcolepsy and cataplexy have stolen so much. It is not fair. My heart is with you, sweet lady.

    The beginning of your post made me giggle because I have had a similar experience the two times I’ve run a marathon w/ narcolepsy. People’s eyes get really big hearing the marathon part, “Wow, you’re going to run 26.2 miles. That’s SO amazing, heroic, brave, etc!” And I’m thinking, “Oh, well I guess running is hard, but it is also so tangible and finite, it’s limited to just a few hours of life and it doesn’t extend beyond that. What’s amazing and heroic is getting up every single day living with narcolepsy.

    Running a marathon is not nearly as hard as living with narcolepsy. Not even close. So you’re a superhero in my mind – for the fact that you are living with narcolepsy, living abroad AND sharing your experience so beautifully here. Thank you. Big smiles, Julie

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    • Thank you so much, Julie! And thank you for always encouraging me, you’re the best! Hopefully I can get Xyrem here… That would change everything 🙂 Ps. If you ever want to come give a talk in Madrid… I could act as your translator 😉

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  2. I don’t think it’s selfish. Being unhealthy in any form is awful. I’ve had four different heart conditions in my lifetime. I just chose to live my life like I don’t have any. People tell me I’m brave for running and skating and biking and quitting my job to live instead of work to survive at a desk.

    The truth is both of them were easy decisions. Living with heart conditions is painful, but I never think about the fact that I can drop down dead today. Why should I? Thinking about it won’t change anything.

    And quitting my job? Well, I’m way more at peace now. I’m sorry I didn’t do it sooner.

    It may sound strange, but the beauty of living your whole life with a condition is that you don’t know anything else. The condition is your “normal”. Find your own way to thrive in that and to turn that weakness into a story of strength.

    Best of luck!

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    • Thank you for your advice! It’s true, this is my ‘normal’ now, so I have to find a way to deal with it and thrive in spite of it. Speaking of ‘normal’, I just realized yesterday that most people don’t know what it’s like to hallucinate… That seems so strange to me! 🙂

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      • You’re welcome. I’m glad you found it useful. 🙂

        One of the things that gave me my 2nd and 3rd heart conditions also made me hallucinate because of the high fevers. I hated it. My hallucinations were always scary. That man on the oats box was always coming after me with a scythe lol. Even as a teen, when it had long stopped, I couldn’t stand to see him

        What caused yours?

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      • Woah, go figure! Do you mind my asking what caused the high fevers/hallucinations?

        Narcolepsy causes hallucinations, actually! Because narcoleptics can fall into dream sleep immediately, occasionally I will start dreaming before I lose consciousness… So I’m hallucinating haha. For most narcoleptics, it happens when falling asleep or waking up, but I also hallucinate throughout the day, especially when I’m tired. I think this is because my brain is fading in and out of dream sleep, even though I feel ‘awake’. So I’ve seen it all haha. While falling asleep, I’ve seen demons in my bedroom, the succubus, seen things moving around and been absolutely convinced that there was an intruder in the room. I HATE that stuff.

        Usually when I’m awake it’s more chill , though. Probably the most common one is that I see bugs and little animals all the time, and I’ll hear my family/friends calling my name. Sometimes I’ll hear music or a radio, too.

        It’s weird because unless I’m consciously thinking, “Is that real?”, my mind will just passively accept whatever I’m perceiving to be reality. But once I think, “Is that real?”, I can recognize that it’s a hallucination.

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      • That sounds scary and inspiring at the same time. Sounds like the perfect base for horror novels. You should look into that!

        I had tonsillitis as a child, which causes hay fever at its worse. Basically it’s a really high fever that sends your brain into chaos. It causes the hallucinations as your brain overheats. It also caused rheumatism, which gave me two of my heart conditions. Like the little devil that I am, I still have my tonsils, but I tested negative for rheumatism as of 2011. 🙂

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  3. Heather says:

    My goodness, you nail it! My son’s lived all over the world (France, Thailand, New Zealand & the UK), but as you say, nothing is more difficult or more isolating than the Narcolepsy. Thank you for writing what I am thinking! Thank you for your honesty about wanting to give your Narcolepsy away (and don’t beat yourself up about it)- I would take my son’s in a heart beat too if I could.

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  4. I cannot imagine how difficult it is, to suffer this way. Humbling really. I hope ur sleep study can produce some improvement, and in the meantime keep on enjoying Spain, with your lion heart I think u must.

    Liked by 1 person

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