"I don't know why she hitted me"

For those of you who aren't narcoleptic, I have a question: do you ever have trouble sleeping? I do. Last night, as I listened to Matt snore away, I struggled to try to rid my brain of the words of young girl who was being examined because of large bruises covering her back. Throughout the exam she chattered away happily with the doctor and nurse, but all the while insisting she didn't know how she got the injuries.

Then, spontaneously, she looked up with a frown and stated simply "I don't know why she hitted me".

A little background: I participate on a board that reviews the cases of kids in foster care. Once a month I receive a stack of case histories to study prior to meeting with the other board members, parents, a representative of DHS, and lots of lawyers. It would not be hyperbole to say that many of these children's life stories are absolutely heartbreaking. I've been doing this on and off for about 6 years, but that fact never changes.

"I don't know why she hitted me": The statement of a little girl just trying to figure it out.

I don't know why her mom "hitted" her either. By all accounts, this mom loves her kids. She's been offered and has engaged in treatment (including anger management and parenting classes) but continues to remain totally invested in an abusive "disciplinary" style. We aren't talking gentle pats on the bottom here. There are allegations this mom had actually stomped on her daughter's back.

I imagine that this positively sickens you to think about. I know it does me.

Thank God I have never been so out of control that I harmed any of my children physically. Nor have I suffered such severe physical abuse. However, I can point to many times in my life when I have allowed myself to take a course of action that I knew was destructive to myself and/or to my children.

There were years when I absolutely could not be in the same room with their father without feeling so angry that I was constantly on the verge of losing control. And lose control I often did.

I knew without doubt that standing witness to me fighting with their dad was unhealthy and destructive for my kids, but I repeatedly gave in to the negative feelings and acted on them. Most of the time I honestly felt completely unable to stop this cycle. Heck, it remains a struggle for me sometimes even now, despite years of prayers and talk therapy.

Despite the fact that I love my kids more than life itself, I have repeatedly failed to act in their best interests.

No, I'm not suggesting that my actions (or inactions) were as blatantly destructive as those of the mother of this child. I am just "wondering aloud" at the overwhelming power my emotions had over my actions.

As humans, we like to think we are relatively "evolved". But those baser instincts, evidenced by the overriding of cognition by more primitive, "emotional" parts of our brains, suggest we still have a lot of work to do.

I know I do.

More later -- until then, stay safe. And if you have an opportunity to make a foster child's life even the teeniest bit better, please do so :o)

"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)

Free will? Or is it "all about the meat"?

Hi there -- I hope you are enjoying a relaxing weekend. Or an exciting weekend. Or a (fill in the blank) weekend that is exactly what you would hope for.  :oD

I'm going to try to keep this brief, but would LOVE to hear what you think. Heck, share this with your friends, enemies and co-workers. It would be fun to get a discussion going on this:

Is there such a thing as "free will"?

As a neuroscientist who also happens to be a christian, I find that question bounces around the walls of my brain with a remarkable frequency. Matt, who is also a neuroscientist, but an atheist is firmly in the "it's all about the "meat"" camp. He believes that the chemical soup that bathes the various areas of our brains is responsible for how we feel and act at any given time. That there isn't much choice, or "will" to be tapped.

I admit he's got a point. I imagine that you, if you have ever suffered from a neurological issue such as narcolepsy, depression, bi-polar disorder or a similar challenge may also understand his point -- whether or not you actually agree with it.

I suspect that most of us have had experiences, thoughts, feelings, actions, that were modifiable via a neuro-active drug or chemical. Have you ever had a "runner's high"? I, sadly, haven't. I do, however, find that pretty much any other kind of exercise will elevate my mood, no matter how depressed or "normal" I was feeling prior to the exercise.

Pharmaceutical treatments act in much the same way. As do some "over the counter" (or "under the radar") street drugs. They change the chemical composition in an area of the brain that makes one feel, think, or act differently.

There was a sadly common story in today's Oregonian about a man with schizophrenia who refused to take his meds and eventually digressed to the point where he stabbed to death his sister who was trying to care for him. That man is a different person on and off his medications. Or at the very least, he certainly acts like a different person when he is on his meds.

So -- answer me this please: is it all about the meat? Are we pretty much a product of our brain chemistry?? Or does he or you or I have "free will". And is this really an "either/or" question?

Oh, and one last question. What do you think about the practice of forcing someone to take their medication? Some states allow this for mentally ill individuals who are deemed dangerous; others don't. What do you think? Is this every appropriate? Is it ever inappropriate?

This inquiring mind wants to know ;o)

Now go get some exercise or do something positive that makes YOU feel good!

To paddle or not to paddle?

No, this post is not going to be a debate about the pros and cons of corporal punishment. Nor is it (cover the childrens' eyes please) a discussion of the more varied forms of bedroom play ;oD   So, take your thoughts out of the gutter and focus instead on a blue expanse of water. Picture that beautiful river or lake and then imagine his and hers kayaks gliding side by side, paddled by me and my sweetie.

Matt and I are about as dissimilar as two people who love each other can be: I'm 50(ish), he is still in his 30s; I love all kinds of physical, preferably outside, activities; Matt is content to sit at the computer, immersed in a role-playing game for hours at a time. Yes hours (I really don't "get" it...). I am a committed Christian, he is a professed atheist. Not exactly a recipe for that perfect match.

That said, one thing we both love doing is kayaking. Matt is stronger than I am, so it is a nice workout for me without taxing him much at all. And we both absolutely love, love, love being out on the water. We have great memories of kayak camping with the kids, being followed by seals and otters, and watching the jelly fish float by so close we could have touched them. Once Matt and I took a kayaking lunch-date. We  paddled up to a floating restaurant, tied our boats to the dock, and climbed on up for a lovely lunch. Fish and chips of course! (The paddle back to the marina after lunch wasn't quite so idyllic. I think those fish were paying me back, but that is a whole 'nother story ;o)
But I digress. We both love to paddle. And therein lies the problem: the things that Matt loves most are the very ones that trigger his strongest attacks of cataplexy. So, what do we do?

I have been kind of pushing him to try going kayaking with me. At the same time, we are both worried that it might actually be dangerous to attempt it. Will getting out on the water cause him to have an attack? If he was to have an attack, would it be possible for me to support him and his kayak, keeping him upright until the cataplexy passes? If not, would hitting the water "shock" him out of the attack?

I think we can make it work, but I am not anywhere near to certain we can make it work. Matt, too, would like to try.

Am I a bad wife, to encourage him to attempt this? Am I putting my enjoyment before his safety? How much of this is about me, and how much is about us?

I don't have any answers yet, but I would love your input...

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.