The hair of the dog!

Hi there -- I hope you are doing fabulous on this lovely evening!

As for me, I am sitting here next to the unhappy pup, listening as Dr. Phil fixes some rude teens on the TV. I love TV -- I watch it far too much. I think I am addicted to the hope that I, too, will tidily resolving all the conflicts of my day in a single 30-60 minute time slot.

Do you ever wish that life would imitate "art" in this way?

I think Brooklyn does. At the moment she looks like she has leprosy or something. I never knew a dog could be so vain! She has been skulking around the house all day. I think she knows it is going to take a good long time for her beautiful latte-colored curls to grow back. Those bald patches really do make her look like she got into a fight with a week whacker, and the whacker won.

Yesterday started out so uneventfully. Matt was playing his computer game, we had some coffee; I took Brooklyn for a nice walk through the park.

I was feeling a bit down, missing our family, and I shared this with Matt. I decided to work out since that never fails to make me feel better.

Matt decided that he would do something nice to surprise me. Brooklyn's coat was getting a bit matted so he set about giving her a trim.

This is not the first time Matt has cut Brooklyn's hair. He's done it a couple of times now, both with rather disastrous results. And yet, all I've been able to say is "Thank you, Sweetie, for taking care of that chore".

To be honest, I would much rather he vacuum the house. Or clean the bathrooms. Or do just about anything else that needs to be done. (and that's a list that has lots of choices on it!)

But do I tell him this? Oh, no.

Why don't I tell him this? For goodness sake, he spent nearly 3 hours shaving the dog and she looks WORSE than when he started. Heck, I finished working out, showered, got a drink, tidied up the downstairs, and then joined him for a good 45 minutes while he continued to whack at her curls. And I sat there while he kept chopping away.

This weird thing happens sometimes when Matt takes his "wakey" meds: he gets so engrossed in even the simplest task that he literally can not put it down. About 2 1/2 hours into Brooklyn's "trim", I realized that this was what was happening.

So I asked him "So, Hunny, how do you know when you are finished cutting her hair?".

The pup's ears perked up, and I blotted at a couple of bald patches that were starting to bleed a little.

"Uh, I don't know. I just keep pulling up the hair and trimming until it looks like it doesn't need anymore. Hmm, I've got a couple of bald spots here" Matt replied. "Maybe I should stop and just shave it all off the next time? It will be much easier next week now that I've done all this!".

"Yeah, that sounds like a good idea" I said. But what I was thinking was "thank God!"

I don't think I can print what Brooklyn was thinking.

So now I need to figure out a gentle and kind way of re-directing Matt's attention to a different task next weekend. Perhaps the car needs an oil change? I really need to find a sufficiently manly chore.

Winter comes soon and that doggy is way too vain to let me put her in a jacket!

The plane, the plane!

Now that title is going to confuse any of you out there who are younger than about 40. Here's a hint though: it is an announcement that aired every week at the beginning of the TV program "Fantasy Island". When you heard Tattoo shout "the plane, the plane!" you knew that the show was about to start, and that someones fantasy was about to take them to places they had never imagined.

Living with narcolepsy and cataplexy was certainly never something Matt or I fantasized about (I think I'll keep those things to myself for now ;o)  This episode of our lives however, has taken us to some places we could never have imagined.

One intriguing place we travel to frequently is the land of "what in the world is going on in Matt's brain". Yeah, I know that many of us ask that question about our significant others from time to time, but for us this is not so much a "what were you thinking?" type of question.

We really do toss around ideas about what might be going on in Matt's brain --what has happened to the neural integrity and the synaptic circuitry of his brain to disrupt his sleep and wake cycle in such a massive way?

For one type of narcolepsy, these questions are pretty far along in the process of being answered. Depending on what scientist is calculating the statistics, roughly 65-90% of narcoleptics have the disease due to what is likely to be an autoimmune assault on cells that produce a neuromodulator called hypocretin (or orexin). If you are interested in more information about this etiology, there are lots of research papers out there that explain the process and result much better than I can here.

So, what about the other 10-35% of narcoleptics? There isn't nearly as much research or as many answers for these individuals. But Matt has been giving this a lot of thought (in his "spare" time) for the last couple of years. And, lucky for me, I enjoy tossing ideas and hypotheses back and forth with him. Almost as exciting: this is one activity that thankfully does not put him to sleep :o)

Is it a coincidence that Matt is a neuroscience researcher? That I, too, have a doctoral degree (in physiology) with my doctoral and post-doctoral research all focused on the activity of the brain? You know, I don't think so. After all, my man Grissom would say "there's no such thing as a coincidence".

So here we are, spending some of our "fun" time together debatingabout what in the world is going on in Matt's brain. Yeah I know, it's a geeky thing, but discussing neuroscience is something we both love to do. That said, for two people whose only "knowledge" about narcolepsy (and yes, I do use the term "knowledge" very loosely) was gleaned from fictional characters on TV, in movies or books, neither one could have anticipated that this particular scientific mystery would become such a huge focus of our life together.

It's actually a lot easier now than it was the first few years of Matt's illness, particularly the two years Matt struggled to get a diagnosis and the first year of treatment. In those days we were pretty overwhelmed with the chore of trying to adapt to this new reality. And Matt complained. A lot.

To be fair, he was pretty scared. His body and brain had turned traitor on him and he struggled just to do the things he absolutely had to to get through every single day. The disease really claimed our lives completely during that time.

I used to think of it as "all narcolepsy, all the time".

Matt seemed incapable of having a discussion with me about anything but how tired he was, or what weird thing his body was doing now. It's a bit of a relief to be able to focus on other things now. Even if our main focus tends to be that singular question: "what is going on in Matt's brain?".

So, it's become a bit of a thought puzzle. We take it out several times a week, look at the pieces we have, and add any new pieces that we've found since the last time we tried to put it together.

I'd like to talk more about the puzzle next time, but let me leave you this to ponder:

Matt had a terrible couple of days on Friday and Saturday. He had many more attacks of cataplexy and needed more naps than he usually does. Why did Matt have more attacks?

This is the very question that led us to discover a new puzzle piece.

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 (http://abcnews.go.com/Nightline/Sleep/oregon-man-paralyzed-feelings-love/story?id=11410135 ). 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: http://www.narcolepsynetwork.org/ 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!

For your viewing pleasure!

I just received an email from our contact at ABC -- a short version of our interview will be airing on Nightline tonight, 11:30 ish and will be available online after it airs.

Hmmm, I guess it is too late to change our minds about this whole thing ;o) 

I confess to being a bit nervous. I don't believe the film footage contains much new information that we haven't already shared publicly, or that my blog readers haven't already guessed at. But our rather personal story is presented and how it is presented is completely out of our hands. As several recent political examples have shown, it is possible to take one bit of film footage and edit it to tell any one of several stories, some more accurate than others.

OK, I admit it: I'm a teensy bit of a control freak.

And we both really want the right story told. We desperately want our commitment to this project to pay off. We hope that the story that ABC airs will dispel some frustrating myths about people with sleep disorders. (No, narcoleptics are not lazy.) Our intent was for this interview to help others who have been diagnosed with this disease, those who have it but don't know it and are still trying to figure out what is wrong, and those who care for them.

That, and I would prefer to be on camera AFTER I lost the 30 pounds I still need to shed.

Lord, give me the strength to turn my back on the Ben and Jerry's as I impatiently wait for a glimpse at the finished product!