In honor

My husband is laying with our daughter. It's almost time to tuck our eldest in to bed. Then Karl is going to drink. He's going to sit in our bedroom and drink beer and watch videos of him and a bunch of other guys drinking too much. The videos are almost a decade old. Some of them feature a guy named Jesse Williams, who was shot in the head in Iraq in 2007. I don't know if Karl will watch the ones with Jesse in them or the other ones. He was the camera man most often so he has all the VHS tapes... yet another reason we won't get rid of our VCR even though we're the only people I know who still own a VCR. We can't move the VHS tapes to DVD. We could... we certainly could, but it wouldn't be the same... Or maybe it would. I don't know. They aren't my tapes or my stories or my drunken nights with dead friends. They aren't my dead friends. I should ask Karl if he wants to put his dead friends on DVD. That's how we'll celebrate Memorial Day.

We weren't invited to any Barbeques or lakes or parties, but we wouldn't have gone anyway. We spent most of the day cleaning and hanging out. The kids spent a lot of time outside playing together. I off-handedly mentioned that a friend's aunt ruined his day by saying "Happy Memorial Day." Then Karl started thinking, whether because of my thoughtless mentioning of someone else's thoughtless comment or just because we can't actually make it all the way through Memorial Day without him thinking about it being Memorial Day. Once Karl started thinking about the meaning of Memorial Day, it became Memorial Day. We could no longer hold his dead friends at bay.

So today, I honor all the men who died keeping my husband from dying and the men who died once they came home and the men who died once he came home.

"Rice

"Martinez

"Ford, he hung himself after the first tour

"Chevy

"Williams

"Romeo, I went to basic with him

"Iaciofano

"Yauch

"O'Brien

"Those are just the ones I know personally..."

 

So, right now, today, I am honoring Rice, Martinez, Ford, Chevalier, Williams, Romeo, Iaciofano, Yauch, and O'Brien. I am sorry for the loss of them and grateful that they volunteered. I am grateful they served with Karl and I hope, in their memory, no one wishes me a "happy Memorial Day."

Zen Buddhism

• I don't feel good possible food poisoning? Honestly feel like I might have eaten something that disagreed with me! Been up late vomiting too many variables. Feel light headed. Thinking about 911
• I'm really sorry.
• Tingly extreme dies
• Extremedies
• Sorry again
• What do Think?
• Panic attack? I feel so ridiculous and dehydeateds sleepy
• Still alive so obvious stress or ?
• I feel that
• Like an idiot for false alarm.
• I apologize again. Feeling better somewhat
• Hopefully just done freaking out
• Meditation was the key
• Guy
• Key to bedtime . Goodnight

These are the 15 text messages I woke up to Saturday morning, in Texas, from my husband, in Washington state.

On the way home Sunday I read Thank You for Your Service by David Finkel. I wouldn't say I enjoyed it, because it was too personal, too close to home, but I would certainly recommend it. It is very accessible, easy to read, honest and sentimental without being maudlin. He gets it. He will make you get it. Maybe. Regardless, he wrote about suicide briefings and about lessons learned.

So, lessons learned from the 15 text messages I woke up to Saturday morning:

• It is time to look into respite care for when I leave town.

Out of everything I was expecting, everything I am expecting about Karl's slow, steady decline, this was not something I expected. I did not anticipate reaching a point where I would say to Karl, "It would be helpful if you knew someone was coming to check on you," and Karl would say, "yeah, probably..."

"...can we stop talking about this?"

I said yes and we stopped talking about it. We will have to talk about it again if I want to leave town by myself again, which I do.

I have a trip planned with some girl friends in June. In June school ends and summer vacation starts and every year during summer, our kids go to Karl's parents' house for a few weeks. So the weekend I'm gone in June will be the weekend Karl takes the kids to his parents' house. I will arrange the flights. I will contact TSA to get him safely escorted through the airport. I will make sure his parents know when to pick him up. Then I will board the dogs and I will go on vacation knowing my husband is in a safe space with people who can take care of him if he needs them to. It isn't that he needs people to take care of him, he just needs to know someone has his back.

I stop writing and read Karl what I have just written, as I often do in the middle of writing or after I've posted, depending on how laborious the process is. Sometimes I need to hear what I wrote out loud to know where it's supposed to go next.

I stop after the text messages, point at my screen, say, "ha ha, Karl's dumb," and he rolls his eyes at me. I know this is what he's thinking though about what I'm writing. I finish reading him the paragraph about taking the kids to his parents and he and I look at each other. After a minute I say, "What do you think?"

"I think I'm tired of having my life on display."

I can feel my eyes growing wider, defenses clawing up my throat.

"I just feel dumb, freaking out over nothing."

My defenses have settled and I am now repeating what he's saying inside my head, recording it to write down.

"It isn't nothing," I say, "It's everything."

"Yeah, thanks, " he shakes his head, gets up, "I'm going to do dishes."

Sometimes when he talks, I start a recorder in my head, but later when I sit down to write what he has said, I have nothing to add to it. I hold these words with me, turning them over, wondering where they belong.

"It's like being a moth," he told me one day, "Once you've been inside the flame, the light doesn't look as bright from outside."

War is like Zen Buddhism he told me.

On the way to Texas last weekend I read War by Sebastian Junger. Even though I had heard the stories before, the book was very compelling. I flagged several pages with strips of a torn subscription card for Reader's Digest, because I knew Karl wanted to discuss it with me later. I also flagged things that sounded like Karl or explained Karl.

Karl is so apathetic about so much that the tiny things he cares about don't make any sense to me. Who cares if one of the kids decides not to wear a jacket when the high is in the 40s? They'll be cold, they'll survive, they'll get a jacket next time... or, more likely, they won't. It maddens Karl. He yells and argues, saying he doesn't want to hear them complain later. To be fair sometimes one of the kids won't get a jacket and will complain later, but often they don't complain at all. Karl just needs the kids to wear jackets. Our kids, being ours, see no reason to wear a jacket just to please someone else. These arguments drive me mad. Why is a 30 year old man arguing with a 5 year old about a piece of clothing?

In War, Junger explains that the soldiers he was with ream each other out for the most minor of offense, such as an untied shoelace. He explains that this is because the men are dependent on each other for survival. It is like Zen Buddhism - everything matters, nothing matters. Every tiny thing matters. All of life is distilled to the most minute details, because the things we think of as big - late mortgage payments, broken iPhone - don't affect our survival. The intricate details - having your gun properly oiled, your ammo properly set, your shoelaces tied - affect survival.

"Zen Buddhism," Karl said, "is very enlightening."

He didn't understand why I found it so funny. Duh, I said, Zen Buddhism is enlightening. That's the point.

It is about nothing, it is about everything. War, life, panic attacks. They are about nothing. They are about everything.

Normal people

"Sometimes I wonder what it would be like to be married to a normal person," she says and I look away.

In that moment I remember standing in a garage, talking to Karl who was half a world away. I was renting a room from someone whose husband was also deployed and Karl was halfway through his second deployment - the 15 month deployment, the only one we were together for. I had just gotten in an argument with my best friend, who thought I was rushing into things, who didn't understand why I had moved myself and my baby across the country for a man I had been talking to again for less than a year. I didn't know, she argued, who he would be when he came home. I didn't really know, she thought, who he was now. She was right that I didn't know who he'd be when he came home, but I knew who he was then. Even in his lowest moments, parts of him still shine through - his honor and honesty. I half listened for my daughter to wake up from her nap and I told him about the argument. She had some good points. If we were going to get married, I needed to know he was in it.

"What if you do have PTSD? What if you are angry? What if you're different? Would you get counseling?"

He sputters a bit. Counseling isn't really something he's into.

"If we're going to do this, I need to know that you're willing to do whatever it takes to make this work."

"Okay, yes, fine."

"Even if that means seeing someone for counseling?"

"Yes, whatever it takes, if I need it."

"Promise?"

"Yes, I promise."

In that moment, when my friend wonders what it's like to be married to a normal person, I am beside Karl in our old Toyota Echo. We are driving on a winding, hilly country road, on the way home from a camping trip and I am crying. I can't do this anymore. I don't want a divorce but I absolutely do not want my marriage anymore.

"You said, you promised," my voice cracks, "that you would do whatever it takes. I can't be the only one here."

I am tired. I am exhausted. I cannot be the only one in a marriage. It takes two people and Karl won't do anything. It isn't even a marriage. It is just work and I would like to quit. So I tell him. I tell him, again, how tired I am. I tell him, again, that I cannot do everything. I tell him, earnestly, that I am unwilling to be in this marriage any longer.

I want Karl. I want him to be home with me in the evenings. I want him to split the bedtime duties with me. I want him to do the dishes. I want him to pick movies on date night. I want him to split a bottle of wine with me. I want him to be my partner.

More than any of these things, I want him to take some responsibility for himself. I want him to set reminders in his phone. I want him to write himself notes. I want him to use his GPS to get places. I know he cannot do everything by himself, but I desperately want and need him to do something for himself.

I cannot be his mother and his wife day in and day out. I cannot continue to take complete responsibility for his class schedule, his chores, his hygiene, his vitamins, his life. Something has to give.

I want to be married to Karl, but I do not want the marriage I find myself in. I tell him this, again, and I ask him to choose. He can continue as he has been, but I will not continue as I have been. If he wants a marriage with me, it has to change.

He started therapy. I started therapy.

I learned to have a little faith. I stopped doing everything I had been doing for Karl directly and I started letting him fail.

He started setting alarms and using the calendar on his phone.

I started taking vacations, alone, where I am not responsible for anyone.

We still fight, regularly, about him taking responsibility for himself. I do not answer him when he asks what we are doing today. I look at him a little incredulously until he consults the google calendar on his iPhone. I buy him vitamins when he runs out, but he doles them out to himself and takes them when his vitamin alarm goes off. I do not remind him to do his homework, but I do find myself very annoyed when he stays up until two in the morning, rude and cranky, because he hasn't allotted himself time to do his homework during the day.

I do remind him not to walk off when he is filling his cup at the fridge. I also remind him when it is time to pick up the kids or take them somewhere or put them to bed. If no one else will suffer when he messes up though, I let him fail. It is better for all of us.

Sometimes I wonder what it would be like to be married to a normal person too. I wonder what we would fight about if all our fights didn't revolve around Karl forgetting something because he trusted himself to remember it. I wonder what it would be like not to wonder if my husband, age 30, will forget who I am within the next ten years. I wonder what it would be like not to try to shield Karl from loud noises and crowds. I wonder what it would be like if I didn't fight with neurologists and neuropsychologists. I wonder what it would be like if it was different: if he had died; if he and I had never gotten back together; if, when I said, "I can't do this anymore," Karl had said, "ok, don't"

Today I went by the mall to pick up a bath bomb for my kids from Lush, my favorite indulgence. A saleswoman who knows me by sight asked how my husband was. Another saleswoman looked at us questioningly and I said, "My husband drove over a bomb." She got a look of horror on her face.

I laughed.

Probably, sometimes, my husband wonders what it would be like to be married to a normal person too.

stories

Last time I went to the library, I picked up War by Sebastian Junger and Thank You for Your Service by David Finkel. Karl immediately confiscated War. He is not interested in Thank You for Your Service, because, he says, "I'm living it."

He devoured War, which is easy to read, and tells a lot of Karl's stories. It tells universal war stories.  Someone raised his head during a firefight and he lived or he didn't. I have heard that story and also the story about the time the guys didn't get to shower for forty days. I have shaken my head at the story of the time the grunts came back from a mission and were scolded for going to the chow hall dirty and disheveled. It is a familiar book because I know all of the stories in it, even though it happened in Afghanistan, not Iraq, even though I have never heard of these men before.

The first book I ever read about soldiers was The Things They Carried by Tim O'Brien. Before that I was only familiar with the blog Army of Dude, written by a guy my husband served with. Now I routinely pick up books about war and soldiers. More often than not, Karl reads them first. Once he reads a book, the chance of me reading it goes down drastically. Sometimes he tells me stories from the book, which I don't want to hear, because I want to read them. Sometimes he reacts too strongly and I just don't want to share his pain. After he read War, which he carefully did not recite passages from, he asked me to read it so we could talk about it.

I can't imagine what we're going to talk about though, because we've already talked about these stories. I have heard them all before.

sad

"How is Karl?" My friend asks, picking up her beer.

"Have you read my blog?" I wonder. I haven't seen her in a year; she's been in England.

"I read the first few entries then I stopped. It made me sad."

"That's the point," I say, laughing.

I understand why she stopped reading though. We met when our fiancés were deployed together. She has since gotten a divorce. Her ex-husband had some issues to start with and being stop-lossed for another deployment didn't help his winning personality. He actually did have a winning personality - he was funny and charming. He also lied, cheated, and drank too much. She's had enough sad in her life without reading about Karl's brain deteriorating.

And deteriorating it is! It makes me laugh to make grand proclamations about how bad things are in sing-song advertising voices. Sometimes it makes Karl laugh too.... sometimes it makes him angry that I am so flippant about his brain.

I am irreverent. I do not show respect for mTBI (mild traumatic brain injury). I tease it. I laugh about it. Sometimes Karl does too.

"Brain!" he'll groan as he forgets what he's saying in the middle of a sentence.

"My brain is leaking out my ears," he'll answer when I incredulously ask what the hell is going on with him after he does something incredibly baffling.

Sometimes we laugh about TBI. Sometimes we don't. Sometimes it is less funny than frustrating or even heart-breaking.

Sometimes it is sad. So there are months when I don't feel like writing a sad story. I don't want to detail how angry I was when Karl ate my turkey. I don't want to explain that I bought two packages of lunch meat, one specifically for me, and discussed it with Karl. I don't want to hear that normal people do that and then feel like I need to explain that it was the last straw on an otherwise "bad brain day."

It is hard to write about Karl too because while it is sad, it isn't pitiable. It just is. Brain injuries, like amputations or disfiguring scars, don't define us. They need to be treated with a healthy dose of irreverence and flippancy.

Recently, someone wrote me an email asking what my husband was taking for pain, suggesting that his odd behavior and forgetfulness were the result of opiates. It still makes me laugh, weeks later, to think of this. For the record, Karl doesn't use opiates. In fact, the only medication he uses is medical marijuana, which has been shown to promote new growth in the brain.

I'm a big fan of medical marijuana, which allows Karl to operate in public. He routinely tells people that on the days he seems normal, he's using marijuana. On the days he seems really discombobulated, he's forgotten his medicine. There's a huge difference. He is more focused, more able to focus, when on marijuana. I say "on" because he doesn't smoke it. He takes a specific dose of medicine made with marijuana. While some research shows that marijuana slows or reverses neurodegeneration, it is very controversial. What I know is: it works for Karl.

"I wonder how much worse I'd be if I wasn't using marijuana," Karl said today, when I laughed because he planted the squash and sunflowers together. The plants were in their own rows, but they looked similar, so he ignored their placement. He cannot trust his brain, which he forgets.... because his brain says "trust me."

It is sad that Karl can't trust himself and that his brain is leaking out his ears. It is also funny... if you allow it to be.