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Thursday, August 19, 2010

Not bad, not bad at all...

I had a glorious moment of being more "tech savvy" than Matt this morning. Yes, I am gloating. I need to celebrate those little victories as they happen. No need to remind me that the poor man was half asleep and not at his best, I have no shame when it comes to pouncing on any advantage I can get.

Matt was pretty stoked to see the short clip on the ABC website and to read the accompanying story ( ). I was "Silly Sweetie, let me show you the rest of story" -smug as I led him to the longer version of the piece.

Rats. I should link to the longer version here, but it's on my DVR. I don't know how to get something off the DVR and onto my blog. Sheesh -- this is totally ruining my whole "tech savvy" claim, isn't it?

Oh well, I did manage to record the piece and surprise Matt with it. And I know that this need to gloat over that very brief victory may seem small-minded of me, but the man is ridiculously smart. He knows his way equally well around a computer or a brain, and he positively slaughters me at "Clue" every single time we play. I, on the other hand, am still in the "trial and error" phase of using our Wii, a full year after we brought it home. And I can't figure out how to share the darn Nightline video clip on my blog.

So, I sat with Matt this morning and showed him the clip they showed on Nightline last night. Amazingly, he actually managed to get through the whole thing without having a full-on attack of cataplexy. When the scenes from our wedding flashed on the screen, he started to slump, and turned away briefly, but he recovered enough to be able to watch the whole thing straight through.

I'm sorry to digress, (again!) but I must say this: it was really fun (for me) to see our young selves laughing and smooching and eating cake as we anticipated our future together. This footage is not an illustration of what we have lost, but a reminder that we have been blessed with many wonderful times together. Those past experiences help to sustain us both through the harder times and they help to remind us of how fortunate we are to be going through this life together.

Back to the episode on Nightline last night: our immediate response -- not bad, not bad at all. Because I am a bit of a skeptic and a worrier, I will withhold final judgement until after tonight's show.

So far, however, the ABC folk have done a pretty decent job of showing what it can be like to live with narcolepsy. They've covered our story with sensitivity and tact when they could easily have gone for schmaltz or sensationalism. I hope that others of you who are living with narcolepsy are finding this to be a reasonably accurate portrayal of the strange constraints this disease often forces upon our relationships.

To those of you who are "narco-curious", please note that this is only one small part of the story. Heck, it's only a small part of the story of Matt and I. There are literally hundreds of thousands of other stories out there. Take a look at some of the other blogs by people living with narcolepsy; several of those who are following this blog are also narcoleptic. Just click on a fellow blogger's name to check out another story. You also might want to drop by the Narcolepsy Network website: and browse away.

And if you have any questions -- ask me; I am always just an email away!

I'm pretty good at email. Just don't ask me to program the DVR or turn on the Wii.  ;oD

Sweet dreams!


  1. Hi, I live in Costa Rica and I just saw your piece on Nightline, I gotta tell you it touched my heart since I had never heard of this before and I think you guys have found a way to love each other no matter what. I immediately ran to my husband, hugged him and kissed him since I couldn't imagine how to live with such challenge. I really admire your strenght and commitment in preserving not only your marriage, but your love intact. No matter what. God bless your family. Helen Arce.

  2. Thank you, Helen! It is so kind for you to share your reaction to our story with us. I hope your husband realizes how lucky HE is too!
    I have a very good friend who grew up in Costa Rica (what a small world) -- I understand that it is a very beautiful country. Thank you so much for taking the time to share your encouraging words!


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