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Sunday, August 15, 2010

Staying on top of the game...

For you to understand this thing that is keeping me awake nights, I think I must reveal an embarrassing secret that I haven't shared before. About 14 years ago, as we were deciding whether or not to get married, Matt confessed to me that I was NOT the most important part of his life. Seriously. And he said it in front of a witness, the pre-marital counselor whom I had insisted we work with before we said our "I dos".

Not the easiest thing to hear from the person you want to spend the rest of your life with, is it? Especially when the one thing that your beloved is adamantly more committed to than you is also one thing that you very well know may end up tearing you apart. Matt honestly tried very hard to get it through my stubborn mind that if it came down to a choice between our relationship and his career, he would choose his job over me.

Yeah I know, pathetic. But I married him anyway. Why? Because I loved him. Because I didn't really allow myself to believe what he said. Because I chose to believe that if it came down to that choice, he would ultimately choose me. Not terribly fair to Matt. Maybe not fair to me, either, but there you have it.

Oh yeah -- you probably want to know; what is the most important thing to Matt? (Drum roll please): his career in neuroscience research. Yep -- his job. His job was, and perhaps remains, more important to him than pretty much anything.

No, I haven't asked him if I am still #2 in his life. I think I am a bit afraid of knowing that answer. I prefer to remain ignorant, to simply recognize the importance of his career. To support him as he does absolutely everything he can to maintain a career that he believes defines the very essence of who he is.

Frankly I think Matt, in turn, brings a lot to the field of Neuroscience, but that is another post entirely. :o)

So the other night, Matt aired his own doubts. For the first time, he admitted aloud that he thinks that this horrid disease is ultimately going to win. In spite of the medicine regime he is on, Matt fights constant exhaustion and multiple attacks of paralysis every day. It has become so difficult for him to complete everything he needs to do as a member of the research and teaching faculty that Matt has begun to think it unlikely that he will be able to sustain his work in this highly competitive profession.

I hope so very very much that Matt is wrong about this. But I confess: I'm really worried. I toss and turn at night, wide awake as the sleep that eludes me claims his body once again. I hate that it might claim his dreams as well.

I want my husband to have those things that are important to him. And when it comes down to it -- it is unimportant to me whether his career still tops that list. I just want him to succeed, and be happy.

Is this possible?


  1. I have been diagnosed with Narc + Cat for 5 years now. At first the diagnosis was welcome. Finally stopping the reign of torment with my body. Not understanding why it wouldn't work. Why all I wanted to do was sleep.

    Now, 5 years later, my career is beginning to take off and I have been married 2 years. I sneak into the bathroom stalls for quick naps. I am ruled by taking medication, sleep routines, and absolute bedtimes. It even affects when I can eat (those on Xyrem understand).

    I feel my mind and body slipping away from me. I am a prisoner to enduring exhaustion. I could explain it a million times, but no one understands. How could you.

    I'm becoming isolated. My friends are my hallucinations. Soon, I won't be fit to drive. Probably another year or so. There are so many solutions which would end this torment.

    But, for me, despite it all, I refuse to quit. Even if it is regimented to the hilt, my life isn't over. I must struggle to live an outstanding life, therefore, every enjoyable moment is made that much more valuable. I have learned to appreciate every second where I am lucid. Every friend who backs me up when I collapse. Very few people get such a rare look at the beauty and possibilities in life.

    Narcolepsy takes my time, but gives me back something much more valuable- appreciation, value for life, and a wild imagination.

    So, what I am trying to say is that every situation gives us opportunities not afforded to others. I will not be defeated until it is time to do so.

  2. I've been narcoleptic for around 13-14 years now. Granted, I live without full-on cataplexy. At most I start slurring and will _almost_ drop wahtever I have in my hands. My brain seems to interfere soon enough for that not to happen though. It only happens when I have really bad days or when I'm just in general really tired. I live without medicine because I choose to. If that means 5 naps a day then so be it. I enjoy being asleep and experiencing the vast power of my brain. Noone except possibly other narcoleptics understand how fucking awesome and powerful some of the dreams we have can be. Wether I have control over them or not, the realism is on par with.. well... reality! The other day I had a dream where I was participating in a NASA-study towards the power of the brain and it took place in a train that somehow managed to make us weightless on earth. I could literally feel the cushions on the walls when I pushed them. Dreams like that make me not want to wake up :)

    As for living with narcolepsy, I have decided a couple of years ago that pursuing a career as computer programmer in a corporate environment is just not good for me (also for non-narcoleptic reasons). I quit my job, traveled the world and started my own company. I struggle on a daily basis. BUt it allows me to have 4-6 hour workdays (that take me a full working day to complete) and do things at my own pace. I love my life now. As I type this, I look out the window with a view over Kuala Lumpur, in my apartment shared with an Iranian girl and a french guy. I don't own a lot, but I'm happy.

    As my flatmate said the other day: "everyone needs to find a balance in their lives, no matter what that balance is. Only there (or close to there) can we be truely happy." Work is not important. Money is not important. Life is. Love is. Passion for what we do is.

    /lifecoach walter signing off (ahem ;) )


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