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Thank you for visiting!

Monday, July 4, 2011

"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)

Sunday, March 6, 2011

Mean girls and dust bunnies

Hi all -- Trish here, checking in from that crazy place we call home.

It's been a weird couple of months here -- Matt's symptoms gaining in severity and me crumbling into a erratic mess of emotional dust bunnies. Work has been a bit stressful. And I realize I am NOT nearly as altruistic as I would like to think I am.

Turns out some people just s.u.c.k.

And others are just CRAZY.

Not you, gentle reader; of course not. But they are out there, and they are unavoidable.

You know what, though? All that pressure at work produced something really lovely here at home:
an opportunity for Matt to be my champion.

It's unsurprising, I suppose, that as the symptoms of Matt's narcolepsy have intensified, I have become increasingly responsible for, well, just about everything. Home, housework, family, pup...

... maintaining our relationship with each other. Monitoring and responding to changes in Matt's health, sleepiness, attitude, needs.

But I got slammed with 8 loooong weeks of incredible stress at work. The type of stress that sent my head right back to the that horrible place in California, and the panic-attack producing months of entering the building each day wondering "is this the day that I will be fired?".

Of course where the head goes, the heart often follows. And this time was no exception. That soft and vulnerable bit 'o me followed my smarts right into the dark pit.

And at the bottom of that pit, what did we find? Yep -- you got it: dust bunnies. Nothing left of Trish but about a thousand frazzled emotions scattering this way and that, elusive and completely uncontainable.

But then, my narcoleptic love braved that mess, stepped up to the challenge, and declared "it is NOT OK for people to treat my wife like that!"

And I remembered: I am loved. Matt loves me and he has my back. (grinning widely) And that is so more important, more central to what I want from life, than, well -- just about anything.

So I must send this shout out to the "mean girls" from work: thank you!

I am so very blessed to be loved by and in love with this man. Most of the time I am so focused on holding everything together, we both miss the opportunities that only occur after life seems to have fallen to dust.

And to each of you reading this: I wish you love.  Find it where you can -- but also let it find you!

Monday, January 24, 2011

Maybe not?

Hi all,

Been a bit crazy around here these last couple of months. I've been working a lot with HAS ( and started doing some consulting with OHAC ( Add the pup, the son who moved back in with us Dec. 1st, two out of town trips, and time spent on a couple of other volunteer commitments and the sum is a crazy (and very tired) Trish. Oh yes, the narcoleptic husband who SNORES very LOUDLY doesn't help ;o) 

A confession about that last bit: there have been many nights when, somewhere around 3 a.m., my pillow has started looking more like a great tool for smothering my Sweetie than for resting my head. No, I'm not going to act on that urge, but I sure do hope he gets his C-pap fixed soon. Or I find some suitably comfortable ear plugs.

I don't mean to complain, just wanted to explain why my posts have been so infrequent, especially of late.

So... in case you've forgotten, let's set the stage: last time we checked in, I shared my optimism about our successful handling our November trip to California. Matt actually managed to make it through the entire Thanksgiving dinner with kids, grands and dad. I thought that, just perhaps, we might finally be figuring out how to live, in public and with family, with this disease.

Wishful thinking, it turns out. The last month and a half have been pretty bad for Matt. I have worried quite a bit that he might need to tweak his meds again. It turns out that he has been worrying about something I hadn't even allowed myself to consider: perhaps he hasn't hit the bottom quite yet. He might actually still be getting worse.

Stay tuned; more later. And this isn't necessarily bad news: more data means more information, and more information brings us closer to more effective treatment. And maybe, eventually, if we are very fortunate: a cure.

But for now, rest assured in knowing that we are OK. We will continue to be OK, and we will continue to be together. This thing is not going to beat us.

Hmmm, I take it back. We are BETTER than OK!

Saturday, December 4, 2010

We did it!

Just a quickie tonight to catch you up. Time to breathe a sigh of relief -- Matt and I made it through Thanksgiving with the family AND my Dad's birthday party without us having to turn right around and drive the 650 miles back home!

We even have the pictures to prove it :o)  Thank you, MaryO, for the great photographs!

How did we do it, you ask? The key seemed to be finding a quiet room where Matt could work or play on his computer relatively undisturbed. Thus ensconced in a corner of Dad's guest room, Matt managed to keep himself mostly awake and upright on Thanksgiving AND (drum roll please) was able to emerge from the hermitage long enough to enjoy a lovely Thanksgiving with the family. Both our girls and their families, our son Joseph and my Dad, all around one dinner table for the first time in years.

Matt had moments of cataplectic muscle weakness (especially when the little ones were doing something especially cute at the table) but no full-blown attack to prevent him from joining in conversation and noshing with the rest of us.

Wow -- we were kinda like a normal family there for a bit. And we did it all over again on Saturday for Dad's birthday. Well, kind of. On Saturday Matt stayed in the guest room pretty much the entire party. Even with the isolation he had some serious attacks, probably triggered by all the noisy festivity going on outside his room. During the course of the day, Dad held court in the living room as 50 or so friends and family came by to eat, drink, and be merry.

Meanwhile, Matt granted an audience to those brave enough to enter the guest room to say "hi".

We debriefed a bit about the trip on our drive home, and agreed it worked out pretty well for both of us this time. Perhaps we are finally finding the boundaries that will allow Matt to spend some time with family but avoid triggering debilitating attacks of cataplexy?

Perhaps we just got lucky?

Hard to say without more data, but I choose hope: I think we are finally figuring it out :o)

By the way -- sorry for the radio silence. I am actually working a lot right now and loving it (though I'll love it even more when we can afford to pay me for more of the hours I work). Check it out though -- we have a website:  My job title is "Director of Research" but at the moment I am doing quite a bit of everything: research, direct service, education. No two days are the same so it keeps things interesting. It's about time I added a bit of "good" interesting to our lives!


Sunday, November 14, 2010

Handmade Holidays

We are pretty darn broke. After being out of work for more than 2 years (but more on that later), we have scraped right on through the bottom. This really sucks during the Holidays, but I actually anticipate a fabulous Christmas this year: we are going to have an old-fashioned handmade Christmas!

Admittedly, this is probably a bit easier for me than for most (I have lots of jewelry ideas and plan on making some fused-glass ornaments). Sorry guys ;o)  But it is the thought and the heart that counts, and I can't wait to see what handmade treasures the kids come up with.

The focus of this blog is a departure from my usual discussion about what it is like to live with Narcolepsy. However, the ArtFire folk are holding a contest and the winner will get a Digital SLR camera! I could really use that camera, so here you have it... my blog about our upcoming handmade holiday.

Stay tuned, fair readers, more narcolepsy and relationship analysis to come. And some very exciting/fun information about my work life!


Tuesday, November 2, 2010

Are we REALLY going to go there? Again?

Matt and I have a crazy few weeks ahead. I am off to the NAHAC (National Association of Health Advocacy Consultants) conference in Washington DC and when I return, Matt will be leaving for the Society for Neuroscience Meeting. I'm a bit bummed about all the time we will apart. (Yes, I AM the person whose last blog addressed the fact that we are back to thinking about living apart again).

Matt -- not so much. He remains pretty unfazed, and exhibits no interest in spending extra time together in anticipation of all that time apart. Not even to squeeze in a morning trip for coffee before leaving for work. Sometimes this gets to be so much to bear: we have so very little "quality" time together, primarily because of the toll it takes on Matt when we focus on our relationship. I don't want to be needy, but it's hard to find a reasonable compromise where I get enough good time with Matt without him having too much good time with me.

So I end up spending most of my time struggling with the sadness that I feel because I'm not getting my relationship needs sufficiently met. At the same time, I understand that it isn't fair to expect all of my needs to be met in my relationship with Matt. I know I need to build more mutually supportive relationships with friends. The problem is, I get so little "good" time with Matt that I hate to spend the necessary time away from him in order to strengthen other relationships.

And so it goes, around and around in my head and in our little lives. A constant low level of depression certainly doesn't make this any better. How can I consider spending time away from Matt when so little of the time we have now is quality, marriage-sustaining time?

What a weird relationship we have. And yet we love each other, and I really, really, really don't want to lose that.

And, oh yes, after our separate trips, we are going to visit family together. Again. This did NOT go so well the last time (check back through my earliest blogs for a recap). However, my Dad has a big birthday coming up, and Matt loves him and feels it's important for him to participate. I suspect Matt will spend most of his time locked away in a room by himself, avoiding the crowd. Hopefully he'll manage to keep from experiencing status cataplecticus (those rolling, constant attacks of cataplexy that make him so very ill)!

I'll let you know how it goes. Because I am pathetically and eternally hopeful (read "in denial"), I kind of expect it to be better than the last time. Only time will tell, so stay tuned! Maybe we'll have spongecake?

Wednesday, October 27, 2010

To stay or go...?

We had another one of those weird talks today: discussing whether it might be better for Matt to have me live separately from him.

If you've read my earlier posts, you know that this isn't the first time we have had this discussion. I suppose the weirder discussion was the one where we debated the pros and cons of me moving back into the house with Matt. How many happily married couples have had to ask themselves that question -- should we move in together?

We love each other; heck, we even like each other! And we really enjoy living in the same space.

But it does take a toll on Matt's health. As he put it today, he feels better (finds it easier to fight off attacks of cataplexy) on weekdays than he does on weekends (when we are together pretty much 24/7), and he finds it easier yet when I am out of town.

Matt and I are not "just" spouses, we are best friends. We like to be together and want to share our lives into the future. We have found a balance of sorts at home that kind of "works" (though is not without significant cost to Matt's health).

Hmmm... I wonder if even Dr. Phil would be able to help us evaluate these choices? We could certainly use all the help we can get.

Stay tuned, kids -- this discussion ain't goin' anywhere unless and until someone cures this terrible disease. Because I love the one I'm with, even when I can't be with him.

I promise to update you as we continue to figure it out...