"Free will" redux :oD

Thank you all for your fabulous, thoughtful responses regarding the question of "free will". I loved reading each of your thoughts and stories on the subject!

It appears we are mostly leaning in the direction of yes: yes, there is such a thing as free will. At the same time, we all suspect there are times when we make decisions in a state of mind that is less than completely "free". Case in point: the schizophrenic man who is off his meds and  acting in a manner that he wouldn't if her were taking them...

Perhaps the "free" part is sometimes buried in so many layers of choices that we have trouble finding it in retrospect? There is a song by Casting Crowns called "Slow Fade" that speaks to this a bit. You can check it out here: http://www.reunionrecords.com/castingcrowns/slowfade/

I have a follow-up question, however. As a mom, I have long lamented the fact that our children may make immature, even childish decisions (an exercise of will) of which that, due to their immaturity, they may be incapable of grasping the significance/potential consequences.

Is it appropriate, then, to say that they have "free" will? Is decision-making truly free when one is unable to truly evaluate the potential outcome?

I don't know. Perhaps you have some thoughts?

One last thing I'd like to share as you ponder your response to this question:

The Casting Crowns song (above) incorporates the lyrics of an old children's hymn that kind of bothered me when I heard it. It goes something like this: "Be careful little eyes what you see (repeat). For the father up above is looking down with love; be careful little eyes what you see."

I confess that this song always seemed a bit, well, confusing to me. At once a warning (be careful what you see), simultaneously a promise of God's love (for the father up above is looking down with love).  I was never sure what the lyricist meant by the juxtaposition of those two statements.

Recently I read a book in which the author talked about an experience he had with this song that he felt put it in to perspective. He was being driven through an extremely impoverished area by a missionary friend, assailed by the incredible challenges being faced by the people whom they passed on the road. Lack of permanent housing, food instability, poor health amid filthy conditions...

Then from the back seat of the car, the missionary's daughters, who had been singing children's songs to pass the time, started singing "Be careful little eyes what you see...Be careful little feet where you go...".  And it struck the author then that this lyric was not so much a threat or admonition, but a plea to pay attention. A reminder to really SEE those who surround us and to remember that (1) God loves each of them, too, and (2) God wants us to act as conduits: to SEE and to ACT.

But back to children and free will: is it "informed" enough to be "free" will to those unable to grasp the consequences?

Inquiring minds want to know ;o)

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!

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?

Learning (at least I hope I learned something) the hard way...

Hi folks, I'm sorry for the delay between posts. Life has been a bit more difficult than usual of late, and I have soooo wanted my next post to be more uplifting than previous ones. I've been waiting for an improvement so that I could approach you from a more positive space, but that ol' rainbow is still  hiding behind the grey clouds.

You may recall that a while back I had the "bright" idea that Matt and I should take a car trip together to see family in California. Miss Riley was getting ready for her first ballet recital and Belle had a soccer game scheduled.

This past weekend we took this trip. I found the ballet absolutely wonderful, Matt: not so much. The soccer game was loads of fun too (for me) although soccer matches between a bunch of 3 year-olds appear to have a lot in common with herding kittens. Stay tuned for more (with pictures!) in a future post.

Back to Trish's folly:

Hmmm, first clue that I had been seriously deluding myself to hope that this would be a a lovely opportunity to enjoy family activities with my husband? -- Within minutes of our arrival in Sacramento, Matt had his first of many, many, significant and debilitating attacks of cataplexy.

For goodness' sake: what was I thinking? Seriously -- what was I thinking?

I know that family time triggers his cataplexy. I know that strong positive emotions do the same. And yes, I am painfully aware that Matt will have an attack if I simply describe to him some cute thing one of the little ones has done.

And yet, I dragged him 600 miles to attend a pair of activities. both of which featured cute kids having fun. Activities absolutely certain to provoke an attack. Or, as it so happened, a series of attacks.

I don't know how to explain my total disregard for our reality when planning this trip. Here are a couple of theories:

1. I really hate seeing Matt miss out on the fun kid stuff and so... I "convinced myself" that the enjoyment he would experience would outweigh the discomfort of the attacks he would have.
2. I desperately wanted to share these experiences with the man whom I love most in this world and... I convinced myself that the enjoyment Matt would experience would outweigh the discomfort of the attacks he would have.

Whatever the reason(s), here is how the weekend unfolded:

We arrived in Sacramento late Friday night. Matt had his first attack. The kids arrived at the house a couple of hours later; Matt had his second attack (so we turned in for the night).
Saturday a.m. Matt sequestered himself in a bedroom until it was time to leave for the soccer game.
We arrived at Belle's soccer game. Matt managed to walk to the field, then had an attack which lasted for the duration of the game, not abating until all of the little ones had dispersed to go home. (The new profile picture is of Matt at the soccer game.)
We headed back to the house for lunch. Matt hid out in the bedroom again until it was time to leave for the ballet recital.
Within 5 minutes of our taking our seats at the recital, Matt had an attack. The cataplexy lasted through the first act and intermission. When Matt was finally able to open his eyes and to move, he stumbled out of the theater and then headed back to the house.
At the house, Matt once again disappeared into the bedroom, suffering another attack which kept him from attending the post-recital BBQ.
Saturday evening Matt informed me that he needed to go home as soon as possible.
We had been in Sacramento for less than 24 hours.
Sunday a.m.: we climb back into the car to begin the 600+ mile drive home.

For goodness' sake: what was I thinking? Seriously -- what was I thinking?

I hate this disease.

I hate the fact that unless and until new ways of treating it are discovered, Matt and I won't be able to share a ballet recital, soccer game or birthday party without Matt becoming extremely ill.

I hate that I will have to do all of these things without my partner.

I hate the fact that this disease robs Matt of the joy of these occasions.

I love my husband but I hate his disease.

Father's Day

It's been a tough few weeks for Matt.

Leading up to the "This American Life" episode, Matt and I were doing a lot of talking about his narcolepsy: the frustrating and scary search for correct diagnosis and treatment, how it has affected our family, where we want to go with the book. The constant focus on this disease that has come to define so many aspects of our lives uncovered emotions that Matt usually tries to prevent himself from feeling.

For Matt, strong emotions lead to intense attacks of cataplexy. These attacks make Matt feel quite ill -- and more tired than usual. Which is saying something for a narcoleptic.

So, going into Father's Day was tough. And Father's Day is difficult even during the best of times.

The kids have learned to weigh the potential effects of their actions on Matt's health. This year they each chose slightly different ways of reaching out to wish him a happy Father's Day. Amanda purchased a card but held on to it, planning to give it to him when we visit next week. Joseph called. And Ben (who is local) dropped by for dinner and brought a funny card.

I lost count of how many attacks of cataplexy Matt had on Sunday, but in addition to the several he had simply because he was already having a tough week, the card from me and each contact with one of the kids triggered another.

At the close of the day, Matt confessed to me that he is no longer certain that he we will be able to tolerate the stress of the trip to California we have planned to take this weekend.

I'm really struggling with this. In the four years since he started having attacks of cataplexy, we've been trying to land on some sort of compromise regarding how involved he will be in the lives of our family, most of whom are in California.

How do we make such a decision? How do we weigh the cost that each relationship takes on Matt's health against the benefits of loving and being loved by another human being? Of being part of a family?

There are no easy answers here. I suspect that we will revisit the challenge of finding a compromise that we can both live with periodically for the rest of our lives.

But today isn't the rest of our lives. Today is two days before we had planned to leave on a trip I have been looking forward to for some time. Three days before we were to share in Riley's first ballet recital and to cheer Isabelle on at one of her first soccer games.

Deep breath: I love Matt and he loves me. We will continue to seek, sometimes blindly, compromises we can both live with. We will repeatedly be forced to confront the question: how much "relationship" is enough to meet our needs without taking too much of a toll on Matt's health.

I am thankful that we are both fiercely determined to keep this marriage working.

There will be more recitals and soccer games. But this has been a tough week.

Sleeping Around: Adventures in Narcolepsy and other mutinies of the brain

How does your brain let you down?

Come on, you know the feeling: You're sitting for an exam and you know you know the answer to that question. Heck, it's even a "gimme" question: free points to even the dumbest dodo in the class-easy! But try as you might, you can not force that elusive answer into focus. (Curse you, O-Chem!)

Or: what is that word? You feel like it's right "on the tip of your tongue", even as it digs itself deeper into some quiescent, hidden corner of you your brain. No amount of excavating reveals that nugget you seek.

My brain lets me down in these, and other ways, all the time.

No!

It's OK to let it out. You know you want to. All together then: "Duh, Trish. Talk about stating the obvious!" (Especially if you happen to be my old O-Chem professor)

But I digress. I didn't intend to mislead you, but this first post isn't really about my brain. It's about my husband's. You see, Matt's brain has truly mutinied. Turned traitor. Let him and all those who love him way, way down.

I promise: there's more to come. Hopefully a lot more as we explore some of the ways that our brains let us down. And how we sometimes manage to thrive, even so.

Let me leave you with this:

I make my husband sick.