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Wednesday, June 23, 2010

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.

Thursday, June 17, 2010

On hugs and other dangerous activities...

I really love a good hug.

No, I'm not promiscuous with my hugs; I tend to save them for those whom I care about. Of course there have been exceptions: times when I really needed a hug. Needy enough to hug Rush Limbaugh or John Boehner -- that desperate..

Once such time occurred on a drive home from Yosemite. I'd been vacationing with my two daughters and another young family. We had borrowed a large motor home and had a lovely time camping out in style and seeing the park.

Somehow when we packed up our assorted children and belongings for the drive home, I ended up as the lone adult in a small car with three kids under four. The other grownups drove the motor home; we made plans to meet up for lunch.

Shortly after I exited the park I lost sight of the motor home. I pulled over on the side of the road, waiting for what felt like hours for the others to catch up. I sat there, trying to entertain 3 cramped, hot, hungry toddlers, singing "100 bottles of beer on the wall" for the umpteenth time. About this time a CHP car pulled over and the patrolman approached the car.

I went for my purse, figuring that I was about to be asked for my license. Panic set in as I realized I didn't have it. No, not just my license was missing. I had no purse. No purse, no license, no money. And no map.

Something you should know about me: I have ZERO sense of direction. Seriously. I get lost following a single wrong turn. In my home town.

Not only do I lack any innate ability to find my own way, I am also extremely gifted at getting royally lost. Most of my "what was I thinking" moments are related to this ability.

Think screeching the car to a halt smack dab on top of light rail tracks on a pedestrian mall. Oncoming train blinks its headlights in warning, onlookers snap pics on their cell phones (certain that what they now witness will head the 6 o'clock news).

It's amazing, actually, that I haven't managed to earn myself a Darwin Award. Yes, I am that brilliant at getting lost.

So there I was: 100s of miles away from a home I had no idea how to get to, no money for gas or food, no map, three hot, hungry (and bored) toddlers. I've concluded that the missing motor home must have gone off the road, killing my husband and friends. And here comes a CHP officer signalling me to roll that window down.

God, I needed a hug. I really, really, really needed a hug.

I don't think CHP officers are allowed to dispense hugs.

My husband Matt fears hugs. He avoids them pretty much as often as possible.

You know that feeling of warmth and love, of "coming home" that accompanies a really great hug? When Matt allows that feeling to gain purchase, he collapses. His head droops; he loses use of his arms; his legs give out. He must either lay down or fall down. Matt has to work very hard at times to not feel any strong positive emotion. Matt has narcolepsy with cataplexy. His brain has turned traitor.

Is it healthy to completely eschew physical affection in a relationship? To prohibit the sharing of positive feelings? I think not. And I am so very thankful that Matt agrees.

That said, how do we find a place of compromise -- a level of affection that nourishes our relationship without debilitating Matt?
I love a really good hug. Sometimes I need a really good hug.

But my hugs make my husband sick.

Tuesday, June 15, 2010

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.


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.