hell

A friend shared this: The Definition of Hell for each Myers-Briggs Personality Type, and I thought it was funny.

Mine says: "ESFJ – Someone you love is in dire need of practical help and you can’t give it to them. Worse yet, they think you’re refusing to help them out of pettiness and they’re mad at you."

That would be SO frustrating!!! Equally frustrating is someone I care about in need of practical help who refuses to accept my help and instead keeps doing something that isn't working! (Oh, wait, that's my life, what with being a mom and all.)

I looked up Karl's, which says "INTJ – Every time you open your mouth to say something intelligent, something entirely idiotic comes out instead."

This is how he often feels with his brain injury.

"Yeah," Karl said when I read this to him, "that's why I don't say things a lot. Sometimes I don't say things 'cause I feel like it's gonna be wrong or inaccurate or not applicable to the conversation, you know? Also sometimes the things I say... they don't... they don't relate to other people. Even when I make it right, people are like 'what?'"

I told a friend this once: that Karl feels uncomfortable when he talks to people; that he feels uncomfortable in groups; that he loses conversations; that he plays with kids at parties because they're less demanding than adults. She said she hoped he wouldn't feel that way that night at guys' night. I knew he would. He usually does. It's just a matter of degree. He is less frustrated with people who are patient with him.

We were talking the other night with someone about the 3 groups he's currently going to: mindfulness, life skills, anger management... and I thought: no wonder people think he's normal. He works so hard at it. He works so hard to be normal.

He won't tell people when he doesn't understand where the conversation has gone, when he has lost the winding thread of it, he will just stand there, confused, because that is easier and less painful than trying to explain that he has no idea what is going on.

I don't feel sorry for Karl. He has an amazing life. We have an amazing life. Because I love him, sometimes my heart aches for his heartache. As we edge in on Memorial Day, my heart is aching as it does every year for all the losses Karl has suffered.

Here is a poem Karl has read me on several occasions. Some time this coming weekend, I will say a silent prayer for everyone who has died in battle, on every side, and for everyone who had to come home without them.

that i may live

Karl had a MRI last week. The report said "normal," because they didn't find anything they were looking for, but I printed out a dozen pictures of his brain and went back to the doctor's office with him. It was a civilian doctor, one I like, who is in the same system as the neurologist who ordered the MRI and the neuro-radiologist who reported that his findings were "normal." I like this doctor because he doesn't act like I'm silly when I print out pictures of Karl's brain and ask him what this fold is, that spot is, or why a part of Karl's brain shows up asymmetrically. Instead, he explains to me that Karl may have an asymmetrical brain or that his head was slightly tilted. He demonstrates why a head being tilted would still make the eyes show up on the same level - I am full of questions whose answers need to be explained to me like I am a five year old. He sends an email to the neuro-radiologist, asking the questions I have that he can't answer.

I skipped a class and called a friend and went to her house for an emergency beer. I sat on her couch and showed her pictures of Karl's brain.

The next day, I dropped a class.

I want to say this was a big decision because I was so adamant that I could do it - that I could take more than a full load and still do everything else. It wasn't a big decision though. I could do it. I was taking 15 hours throughout cookie season and when my husband wasn't allowed to drive for a month and I was doing it all. So, yes, I could do it. I'm not even dropping the class because I've now proven I can do it and I feel validated (because really I'd have to stick it out to the end of the semester to prove that).

I'm dropping a class because last week I looked at my husband's brain and because yesterday, on Easter, I mourned the loss of those who died so I could live, and because I hate the class and I don't have to take it. Not now, not yet. I have a million justifications about needing time and my GPA, etc, etc, but it doesn't matter. I dropped the class because it wasn't fulfilling me. I am lucky enough to have a life completely paid for and what a waste of life it is if I spend it being miserable. Karl did not die so I could live, but he gave up part of his cognitive functioning so that I could live in financial security. This is not a fair trade. I have thought many times over the last week, as I've examined black and white spots in his corpus callosum and his frontal lobe, how much I would love to give it all back.

Yesterday our minister was talking about how people say you're brave when really you have no choice. She mentioned Jesus asking God to "take this cup from me." And I, who am not Christian, thought "yes! this!"

TAKE THIS CUP FROM ME. Take this house, this full pantry, this new(ish) car, this $70 sundress (who spends that much on a sundress?!?), this new bed, these sheets, this neighborhood and playscape and safe walk to school and air conditioner. Take my cups, plates, bowls. Take it all away and give me back a Karl unscarred by war.

But it does not work like that.

There is no money I can give to heal his pain or his suffering or his sadness.

There is no trade for his anger or his confusion.

This is my life. The neurologists and the MRI films and the confusion and the sadness and the loss. The house, the car, the playscape, the netflix subscription, the full pantry, the $70 sundress, the iphone, the air conditioner, the Lush bath bomb. This is the life that Karl's sacrifice gave me.

I am probably not going to cure cancer or change the world, but I am damn well going to enjoy the breaths I take and the classes I take and the life I have because it is the only way to truly appreciate his sacrifice. He didn't do it on purpose. He didn't willingly trade his memory for my creature comforts, but that is the trade we are left with, this is the life he sacrificed for.

so you can live

When we talk about resurrection, do we mean a literal rising from the dead? Or could resurrection simply mean the way that our lives go on without us? Could our resurrection be in our legacy and not in our hearts starting to beat once they have lain still and silent in our chests?

These are the questions that my Unitarian Universalist minister raised today, speaking about Jesus and Martin Luther King, Jr. and how we have no control over our memory and our legacy once we have left this earthly plane. We have no control over the impressions we are leaving on people while we are still living, for that matter, which is why I remind myself often to assume the best intentions. We cannot take back our words or our deeds, especially if we are dead.

My minister spoke of Jesus' words, of his going against the popular religions of the time to cleanse prostitutes and lepers, of his life spent in love. She spoke of his name being used today for hate and discrimination. She spoke of MLK Jr's speeches about conviction and love. She spoke of both Jesus and MLK Jr. meeting hate with witness, with peace, with passivity, with love. She quoted MLK Jr, "A man who does not have something for which he is willing to die is not fit to live."

Now that they have died, we are free to selectively quote Jesus and MLK Jr., using their words for our purposes and ignoring their teachings we find too hard. We are free to make their lives and their deaths about us, about our needs and our prejudices. We do not have to think about what we would die for.

As I listened to her speak, I thought about my convictions and about the convictions of the man whose hand I held. He would die for me. He would sacrifice himself so that others could live. He would not do it peacefully. He would not meet violence with acceptance... or he would. It depends on the violence, the death he was saving me from. He would fight if he could, he would save himself too, but if it came down to it - a grenade maybe? - he would trade places with me.

I know this is one of the big draws of Jesus - he loved us so much he was willing to die for us. I think it's a more common love than people think. Maybe this love was not one of the miracles of Jesus, maybe it was part of his humanity.

On Easter 2007, a man named Jesse was shot in the head in Iraq. Karl, my husband, saw him after he was shot. Karl rode in a stryker back from a mission with a man who had Jesse's helmet strapped to his uniform. In the helmet were remnants of Jesse. I didn't know Jesse. I have seen videos of him. I went to his funeral. I met his widow and his daughter. I don't know what Jesse died for. I think he died so we could live. Not like Jesus, not in the way that Jesus meant to save us so he was willing to die for us, but in the way that Jesse was there for his country and his guys and he shot back so the man next to him would live. Or maybe, just like Jesus. Maybe there are men and women who are flawed, but who believe so much in their way of life, they are willing to die to save the rest of us. Not just American soldiers, but Iraqis too, who fight for the right of their neighbors to live in peace. And people from Afghanistan and Korea and Vietnam and every country that our country has ever fought in.. Maybe there are people all over the world willing to die for the rest of us, because they have conviction and passion and they have found something they are willing to die for and it's life.

This is what survivor's guilt is about: they died so you could live. Now you have to live. You have to ascribe meaning to the deaths of those who fell for your life. This is why veterans start organizations to help each other or the community (WWP; The Mission Continues; Iraq Veterans Against the War); why veterans make art and tell stories (SongwritingWith:Soldiers; The Telling Project); why veterans try so hard to live and why they find it so hard to live (veterans commit suicide at a rate of at least 22 veterans a day). It's a lot of pressure to make sure your life is worth your friend's death.... but maybe it doesn't have to be. Maybe people are not dying in wars because our lives have to be amazing and leave an impact. Maybe people are dying just so we can live; just so we can draw another breath and hear a baby laugh and be kind to one another. Maybe we don't have to try so hard to build the right monuments and write the right words and do the right things. Maybe we can just be here. Maybe they died just so we could live.

visible

Today it's sunny and it's gorgeous. And it's too hot and the sun is too bright, after days of grey clouds and 60 degree highs. I want to go outside because it's pretty but I don't want to put on sunscreen. I am glad it's nice out but gloom is easier on my eyes and my skin. This is what my life is like right now. So many things are happening and I want to just take a step back, crawl back into bed and quit. And when I tell people it's too bright, they say, oh okay, go back inside for a few minutes, adjust to the light more slowly. But I don't want to.

I'm not very good with metaphors, so I'm going to quit while I'm ahead.

The point is, sometimes, I don't feel like a failure. Not often, not the time I'm home ignoring my kids so I can do homework and certainly not the time I'm spending arguing with my eldest child; not the time I'm spending trying to get referrals for my daughter and not the time I'm sitting on the floor crying; not the time I'm tired from staying up too late nor the time I'm trying to reschedule the appointments Karl missed because I wasn't home to take him to the doctor. Sometimes when I'm sitting in class and my Lit. instructor says that in 16 years of teaching, she has never considered my view point of the play we've just read, I feel like a person who has things to say, things someone will listen to, which is an amazing feeling given that usually I feel completely ignored by my family (pick that up, do your homework, flush the toilet, wash your hands). Sometimes when I get a paper back in Math and the instructor has written "interesting way to solve the problem!" or she tells me she's never seen someone solve another problem the way I did, I feel like a person with an interesting point of view. Sometimes, I feel like a person!

It's hard, this being a person thing. It means that I'm not always home for dinner. It means that I don't have time to snuggle at bedtime. It means Karl misses appointments. It means I sit on the floor and cry. It also means I get to leave my house and go to a magical place where people think I'm real. Where people think I have insight. Where people want to hear me and see me. It's hard. It's a really big adjustment for us all for me to keep doing everything I always do while spending hours every week being a person, but it's worth it.

And it's okay for me to sit on the floor and cry too. Sometimes I need that.

invisible

"I was like sorry dude, sometimes my brain doesn't work and he was like uh huh huh, me too and I said no, I have a head injury. The more I read about dementia and stuff, the more I feel like I have that."

This wasn't a profound story or an intense moment, these are words my husband said as he went to our room to get dressed. This was just a conversation, a story about a new guy in choir and how my husband gave him the wrong instructions. The guy's name is Todd. Maybe. Karl thinks his name is Todd, which he told me last night when we were watching Parenthood and they were making fun of a guy whose name is Timm (with two Ms). I tried to explain to Karl that Todd is almost always spelled with two Ds. When I explain things to Karl, I think of my children, who love to correct each other about things that don't matter... like the normal spelling of Todd. Probably my children listen to me correct Karl every day and they think this is normal.

Maybe I shouldn't be correcting him? Maybe I should let his brain decide that Todd is spelled T-O-D most of the time, because what does that matter in the long run? But what about 93-7= 85? If he repeats that enough, will he be unable to ever remember that 93-7 really equals 86? If something is going to stick, should we take the chance on it being the wrong thing? But is stewarding his knowledge my responsibility?

Honestly, I have no idea. I have no idea what I'm doing any of the time. In the past two weeks, I have done more than my fair share of sitting on the floor crying. I feel like I'm failing on too many fronts and I don't have time to question if the ways I'm failing are the right ways to fail.

I started taking classes at the community college. The kids are both in school and my classes are paid for through some programs for spouses of veterans who are 100% disabled and I wanted to go somewhere everyday where people saw me, not Karl's wife or my kids's mom, but the colorful, loud, irreverent person I am. I want to annoy people and make people laugh and be noticed. I want to exist, which is so hard to feel like you're doing when your life revolves around other people. Because  I want so hard to be seen and because I've always been good at school, I decided to take five classes, instead of the four classes than make one a full-time student.

Right as school started, so did Girl Scout cookie season. My eldest child has sold 500 boxes in the previous two years and has a goal of 650 boxes this year. I'm the troop cookie mom. I feel passionate about this, the largest girl-led business in the world, and it's not hard work, just a lot of organization, really.

At the same time that my classes started and cookie season started, our daughter was evaluated for OT (Occupational Therapy) and PT (Physical Therapy)... and then her teacher suggested she be evaluated for speech therapy as well. Now that she's in all 3 therapies, it's been suggested to me by several people that she might not just have SPD (Sensory Processing Disorder) and we are now going down the rabbit-hole of specialists to find a diagnosis for her. And we might go down the rabbit-hole only to end up back where we started, with a diagnosis of SPD and recommendations that she be in OT and PT, but we are going down the rabbit-hole.

In an hour, Karl and I have a home visit for the VA care-giver's program. My house is a mess. I have taken over the formal dining room with school and cookie detritus. I have not done laundry. Karl has and the proof is folded all over our couch and loveseat. Our studio is covered in cardboard scraps and markers. And I am sitting here, not cleaning, not even trying to make my house look reasonable, not showering, not getting dressed, just sitting here, surveying the mess and thinking about how everything right now feels like one.more.thing. One extra thing for which I don't have time.

Last weekend Karl took the kids to see his parents because our school district has a four day weekend at the beginning of February every year. I did homework. I also went to a super bowl party, which was fun, but mostly I did homework.

I asked my math instructor this week if I could get Wednesday's homework when she gives us Monday's homework so that I can do all my homework for the week over the weekend. I have no time to do homework between Monday and Wednesday, because I have 4 other classes before I go back to math and probably a cookie booth and maybe PT and OT and a conversation about dementia and I have to sleep, which is hard because I also desperately need to stay up for an hour after everyone else has gone to bed and spend an hour not doing homework and not being anyone, but just recovering from all the being and doing.

I accidentally skipped a speech assignment that was worth a lot of points and the instructor has said repeatedly that she offers no extensions or make ups. I didn't even ask for an exception, because even though I did all the other assignments I could get my hands on two weeks in advance, I didn't have a good excuse for not doing it. I have a lot going on, but if I can't handle the class, I could drop it. My GPA is probably going to suffer, but as long as I pass, it shouldn't matter.... except it does matter. When I feel like I'm failing at so much, it would be nice to be good at something.

Logically, I know I'm doing the best I can and that's enough. It's plenty. Cookie season will end. We'll get in to see specialists and they'll give us answers or they won't. The semester will end and I'll have passed (or not). In twenty years, probably nothing that has happened today will matter. In a hundred years, it certainly won't. It isn't even the failure that's hard, it's just the sense of not having time. It's the sense of not being able to stop and breathe. It's the sense that I don't have time to write... or read... or watch tv, because I should be doing other things. It's the sense that maybe.... maybe the best I can do does not actually involve being seen.

...because if I give up something to make time for all the other things, I won't be giving up Karl's care or the cookies or the rabbit-hole of diagnostics, I will be giving up the time every week that I am called by my name.

letters and numbers

I know the artist. Her name is Jenn Hassin and I heard her story before she heard mine. She took a class with Karl years ago and he was surprised by her story so he came home and gave it to me. We ran into her again when we did The Telling Project and we gave her our stories.

We were invited to a send off for this art piece, titled Letters of Sacrifice. Over the base is chicken wire and inserted into the chicken wire are condolence letters. There are 6,820 condolence letters. I was one of five people who each added a condolence letter this weekend, for the five most recent deaths in Iraq and Afghanistan.

I looked on Military Times for Yauch and O'Brien, Williams and Chevy, Martinez and Rice, but I could not find their numbers. Jenn pointed out to us which rows corresponded with which years, 2006 - 2008 comprising the largest section. 2006 - 2008 being when Williams and Chevy died, when Karl drove over a bomb, when I shared a cigarette with a friend who was sent home by friendly fire, when I laid on the floor and cried because I didn't want to see any of those letters.

Jenn said she is often asked about the empty chicken wire at the top of the piece. It is an unfinished piece, she points out, because men and women are still dying in ongoing conflicts in Iraq and Afghanistan. She pointed out a letter she inserted with the family of the dead soldier. Karl shrugged while I looked for the numbers of his friends. He didn't need to know where they were, he said, because he knew where they were. I don't know what he meant: they are in his heart? in the ether? in the ground? I didn't ask, because apparently I was the only one who wanted to assign names to the letters. It's easy for me to go down the rabbit hole: when I start looking on Military Times for men Karl knew, I start searching for men and women from my home town and the town I went to high school in. I am trying to know them, these 6,820 people I will never meet.

If we took a moment of silence for each of these people, we would be silent for 4 days, 17 hours, and 40 minutes... I am tempted. If we donated one day of our life to each of these men and women, we would spend 18 years, 8 months, and 1 week devoting our lives to them, which is funny, given that some of them were younger than 18 years, 8 months, and 1 week old when they died...

Obviously I'm using the term "funny" loosely here. My definition of "funny" is much different than it used to be. As we stood around Letters of Sacrifice, shivering in the cold, a Vietnam veteran cried, but Karl and I laughed, not at the sacrifice before us, but about the life around us. We can stand next to a memorial for 6,820 service members who've died and laugh because we carry them with us every day. I did not know there were so many of them, but they are with me. They are in the ether. They are the air I breathe. They are my freedom of speech, my grief for Karl, my hope for my children.

I did not know them. Any of them. I don't know if they were good men or bad men, good women or bad women. I don't know if they drank too much or drove too fast or fed the homeless or walked little old ladies across the street.

As we stood there, someone asked Karl what he wished civilians knew about the 6,820 letters before him and he mentioned the webs that spread from them to their families, friends, and communities. Then he mentioned that there were innocent lives lost on the other side and webs that sprang from them. Those people, on the other side, killed by our side, they are also the air I breathe, my hopes, my fears.

All these lives. They are the beat of my heart, the glance I throw Karl when I see him across a crowded room, the hug I give my children at night when I tuck them into bed. They are my gratitude that Karl is here and my anger that he is missing. They are the sounds of taps and the tears in my eyes when I see homecoming videos. They aren't anyone I know, but they are every one of us.

if wishes were fishes

I know two women whose veteran spouses have committed suicide in the past year. I think that couldn't happen to us, but I wonder how it could have happened to them, guys who were "doing so well." Sometimes, for a moment, I think I might get it.

Tonight at bedtime our daughter punched and kicked Karl, who decided that meant our daughter couldn't watch Power Rangers for two years. Yup, two years. Our eldest child practiced some words for the spelling bee but when I left to deal with our daughter, they decided they didn't want to practice with daddy. So they started acting up and ignoring him.

I calmed our daughter down and went back to our eldest and told them it was bedtime.

"You can just go straight downstairs," I told Karl who was close to the end of his fuse.

As I sat in our eldest's bed, I told them they needed to try harder.

"But Daddy's a jerk!"

"Well, he has better reason than you," I said, trying to be gentle.

"There's no good reason to be a jerk!"

"Maybe not... but he has lots of bad memories of war and it's hard for him sometimes to be nice."

"But! The war was so long ago!"

I guess it seems so long ago because he got back from Iraq (the second time) when they were 2.

"Have you ever seen one of your friends die?" I ask, already knowing the answer, sighing at myself for asking this simple question, wondering if 9 is old enough to hear what I know I'm going to say.

"No."

"Okay, how long do you think it would take you to get over it if you watched one of your friends die?" It hurts me to ask them this, my baby, my tiny child, but I know they need to think it through if they're going to have any compassion for their father and the things he carries.

"Stop asking me this!" They have already realized that my questions are too hard, that they are out of their depth, that they don't want to spend a single second trying to imagine what their daddy has been though.

"Then," I continue, because there is so much more, "how long do you think it would take you to get over people shooting at you every day for a year?" I am simplifying things. He was in Iraq twice, for a year once and 15 months once and people were never shooting at him every single day for an entire year straight, but it is easy to imagine that out of 800 days in Iraq, he was shot at, at least once, for at least 365 days total.

My baby had pulled a blanket over her face, and they pulled it back down now and looked me in the eye.

"I wish Daddy hadn't driven over a bomb," they said in a thick voice.

My life flashed before my eyes - the medicaid and food stamps; the C&P exams; the award letter we received when he was finally rated 100% PT; the retro-payment; the house we bought; the days when we send the kids to school and have the luxury of sitting at home doing nothing; the financial security - and tears filled my eyes and slid down my cheeks.

"Me too, honey, me too, so much," I said, picturing Karl in high school, quick-witted and easily able to remember everything, the Karl they will never know.

They sat up and hugged me and we wiped away our own tears.

"I love Daddy and I think you love him too," (here I was interrupted with their incredulous "of course I do!") "and I know Daddy is trying his hardest. Sometimes our best sucks. Sometimes my best sucks," (here they wanted an example so I reminded them of when we were on vacation and I smacked their stomach because they wouldn't stop shrieking at me. For some reason both kids let me off the hook and forget my bad moments much easier than they forget Karl's.) "Sometimes Daddy's best sucks. Sometimes your best sucks. But we're all in this together and we just need to try a little harder."

They exclaimed "I'm sorry!" a few times. They are willing to give Karl a break when they remember that his life has been scary. I hugged them again and went downstairs.

Karl asked if I was okay and I tried not to cry as I told him that they had said they wished he hadn't driven over a bomb. At that moment, I thought about how hard it must be to have your wife and your children wish you were normal; how hard it must be to wish, every day, to just be normal, to be who you were before you drove over a bomb, or got shot, or became some new person that no one knew, least of all you. I thought about how it could sneak up on me when I thought we were having a normal day and I thought how it must sneak up on men and women who struggle with being damaged. I thought maybe I might understand how fucking hard that must be.

I don't though. I know how hard it is for me and how sad I think it is and how sad I think I would feel at trying, every day, to come to terms with who I am when maybe I would be someone slightly different, slightly worse, every day.

I don't know if war is courageous. Sometimes, I'm sure it is. However, I know that waking up every day, knowing the world is a terrifying place, and putting one foot in front of the other (if you still have them both) is courageous.

Today, before I cried about Karl's brain, I laughed about it. A new friend came over to pick up her son, a friend of my daughter's, and we were talking about brain development.

"Brains are pretty important," she said.

"You can't live without them," Karl said.

"I don't know," I said, turning to Karl, "you seem to be doing pretty well."

He made another joke, one about his brain leaking out his ears every night as he slept and I told him he wasn't allowed to sleep anymore.

To clarify, I asked my new friend if she knew Karl had a neuro-degenerative brain injury. We travel in some of the same circles and she did know, but, she said, it made her more comfortable when I joked about it. I told another friend about this conversation later and she said she would never joke about Karl's brain the way that I do, but she understood that we joked about it and we seemed to have it figured out.

I don't think we have anything figured out. I wish he hadn't driven over a bomb.