Not so secret anniversaries

Today is the seventh anniversary of Karl and I's wedding, which means we've actually been married seven years, three months, and seven days. Like many military couples, we have two anniversaries - the day we signed our papers in what was not, by any stretch of the imagination, a ceremony, and the day we coordinated to have both our families in the same place while Karl was on leave so they could witness us saying vows while dressed in fancy clothes. Today is our fancy clothes anniversary.

Every night at dinner, we ask each other "dinner questions." I always ask "what was your favorite thing today?" Karl asks "what was the worst thing for you today?" Telling, no? Tonight, in honor of our anniversary, I asked "what was your favorite thing over the past seven years?" Karl asked about the worst thing of the past seven years. Our children modified their usual questions to span seven years too.

The best thing for me over the past seven years has been building traditions and creating a family rhythm out of nothing: the private jokes and slang we use, that would mean nothing to anyone but the four of us; the stocking stuffers I buy while I roll my eyes because I didn't realize I was starting a tradition when I first put Pez and Band-Aids in the kids' stockings. We created all of this together, the four of us, and it amazes me.

The worst thing for me over the past seven years was the discovery and grieving process of Karl's brain injury (today we were naming the months of the year and he skipped one). This is always the worst for me. I want to trade back in our comfortable finances and get the boy I met in high school back instead. The worst thing is each new thing he forgets. The worst thing was when he wouldn't get help. The worst thing was when I found him crouched behind the couch, waiting for me because he thought I was going to come after him. The worst thing is when he is not merely forgetful, but weird. The worst thing is when I am scared.

"What was the funniest thing for you?" is what our daughter asks. The funniest thing for me, over the past seven years, was when our daughter was born and she weighed over nine pounds. I didn't believe the doctor. Our daughter was born via c-section so even though I knew they had to use the vacuum (on a c-section baby! she was huge!), I didn't really have a feel for how big she was, but the doctor assured me that our daughter was, indeed, huge. We called her "big fat baby."

"Did anyone do anything nice for you today?" is what our eldest child asks, except today they asked if someone had done something nice for me in the past seven years. I told a story they don't remember, about one Christmas when we were still fighting the VA, still on food stamps, and a family adopted us because Karl is a veteran. That wasn't the nice part though. It is nice, but it's easy to go out and buy a few toys for someone. The nice part was that when we received the gifts, we also received handmade pillowcases for both our children. We were people.

Karl said the nicest thing someone had done for him in the past seven years was that I fought the VA for him.

It only took five years...

club membership

You're not in my club. No matter how compassionate or understanding or eager you are, you are not in my club. You might even have a family member who was in the military, but it doesn't mean you have any scope of understanding of what my club is.

I am hesitant to write this, because I want civilians to feel comfortable with veterans and their family members. I want civilians to want to understand. I don't want to alienate anyone.... but I am angry. I am worn down and furious.

I know that asking "what can we do to help?" is meant to be a helpful question, but the truth is, I don't know. I don't know how you can help. Stop the hero worship. Recognize that veterans and their families are people. Stop saying "Happy Memorial Day." Learn a veteran's story. However, remember that you are not in my club.

You do not get to joke with me if you are my waitress and my six year old tells you her daddy has a brain injury. You do not get to say "He seems really nice. Are you sure he has a brain injury?" You do not get to tell me that watching veterans eat for free one day a year at select restaurants at select locations off a special menu makes you want to join the military. You are not in my club.

The people in my club get to say "oh brain," and laugh, with Karl and I when he forgets something silly. They get to mock me for forgetting things by asking if I have TBI too. They get to ask, without hesitation, what my husband's ratings are and what they are for. They get to joke about free food one day a year at select restaurants at select locations off a special menu making all their sacrifices worth it.

I know that people who aren't in my club ask "what's his disability?" to be helpful.... but it doesn't come off as helpful, it comes off like the organizations who only want a veteran in a wheelchair to show up at their events. It comes off like they don't think my husband is disabled enough.

I am so frustrated because I feel like what I personally want for civilians is a difficult task. I want them to recognize that veterans are people. I also don't want them to define disabled veterans by their disabilities alone. I also want them to recognize that they aren't in my club and they don't get to make fun of my husband or fucking wheelchairs. I want people to want to hear our stories... really hear them. And understand them. And understand that free food one day a year is like trick-or-treating. It is Halloween for servicemembers. They put on their costumes - their hats or shirts or uniforms - and they go door to door asking for goodies. Just like children on Halloween, they endure comments about their costumes, their wars, their visible and invisible wounds.

I look at them and I know, I'm not in their club. I wore an old PT Army shirt of my husband's today. I was even mistakenly thanked for my service. I am not in their club though. I will never be. I won't go to war. I won't be drafted or volunteer. I won't know what it's like not to shower for forty days or do push ups until I vomit or drive a Stryker or an MRAP or a Humvee. I won't be locked down by fire in a stranger's home. I won't drive over an IED. I won't watch dust rise off everything around me. I won't smoke a cigar with another veteran who was there and laugh about someone reenlisting under fire. I am not in their club... and I guess what I want from civilians is what I strive to give the veterans in my life - respect, humanity, the benefit of the doubt, compassion, understanding, and recognition that I won't ever be in their club and that's okay, for me and for them.

It is okay not to be in my club. I'm sure there are many clubs you're a part of that I'm not - college or sports loyalties, church affiliations, chronic illnesses, dead family members, addictions, hobbies - and that's okay. I get that I am not part of your Subaru enthusiasm group. It doesn't make me better or worse, it just means I don't get your inside Subaru jokes and I probably won't try to tell you anything about my piddly knowledge of Subarus. We all have clubs. This club, the disabled veteran community I belong to because of my husband, is not a glamorous club.  It's just my life.

conversations with kids

There are words I never thought I'd have to find that I use often. There are words I say to my children, metaphors I make up as I go along, to explain to a six year old and a nine year old what it's like to have a brain injury.

It's nice in some ways that they will grow up with this knowledge. It's nice that they have some patience for their father and some understanding that he wasn't always this way. It's sad though that our eldest, who was just shy of two when Karl came back from his second tour of Iraq, and our daughter, who was born just over ten months after Karl came home, will never know Karl as he was before.

"He used to be quick," I told my eldest today, while they and I were out having some just-the-two-of-us-time, "he used to remember things better than most people... like you."

"I can not imagine that," they responded, with an incredulous laugh in their voice.

"Well, it's like his brain is a car - it still gets from one place to another.... it just doesn't go as fast. His brain used to go really fast. That's called processing speed. That's one of the things they tested. His memory is bad too, you know that though."

"Yeah, he can't remember anything. I can't imagine not being able to remember where I'm going if I'm walking somewhere."

"Right!" I said, "Imagine your brain works fast and you remember things as well as you do now, because you remember things better than some people, right?"

This lead off on a tangent about things they remembered from when they were 3, but we circled back around when I told them to imagine being 24 and suddenly not being able to remember simple things anymore.

"I can not imagine that," they said for the second time.

We talked about how brains are weird and how things people remember are weird. They remember telling me about a dream they had when they were barely three. They remember the first time we saw our first house, when they were three and a half. They remember a watering can we had when they turned six.

"Daddy remembers things from when he was a kid still," I tell them, "he just can't make new memories very easily."

Apparently they know he remembers his childhood because he recently told them about breaking his nose when he was a kid and they were grossed out. They also know more about blast wave induced TBIs than most adults they encounter. They also think the science of learning how brains are impacted by blasts or by force ("like football," they say and I know they listen to me rant) is fascinating.

They also know, thanks to our conversation today, what IED means.

"People can make bombs at home with materials they buy at the store, and that's the kind Daddy ran over."

"I wouldn't make a bomb," they say.

Me neither, I think, but then I think about war and safety and come up with a few scenarios where I actually would place IEDs around my house to protect my family. I wouldn't have thought of any of this before Karl. I would have seen black and white and thought bombs were bad. Sometimes now, because of Karl, I think about how scared or angry someone must have been to put a bomb in the street, and I thank my lucky stars that I have never been in a time or place so terrifying.

fighting

"...and you're never getting divorced," our six year old proclaimed from the backseat.

She is too young to remember a time we talked about divorce, so I ask why we would get divorced.

"Because you fight a lot."

I try to explain that if we're fighting, Karl and I are okay, but I'm not sure it makes sense if you're six.

I do not try to explain that if Karl and I are teasing each other about divorce, it means we're fine. I often get calls on our home line asking for Karl. When I ask if I can help instead, they ask if I'm his wife.... "Today!" I say or "So far!"

We don't joke as much about divorce as we did in the early years, before I asked for a divorce, before we went to marriage counseling. We joke more about it than we did then though. It's hard to laugh about divorce when you're trying to figure out who gets the house.

I can't tell my daughter we'll never get divorced... because who knows? Life is hard. Marriage is hard. I don't think Karl and I will get divorced, because we've seen the road map back from a bad situation. We know that when it feels like we have nothing left to give each other, there is more. There is more hope. There is more love. There is more to our marriage than the bad days. There is more to our marriage than fighting.... even if it doesn't seem that way to the six year old in the back seat.

I wondered if I should feel guilty about it - my daughter thinking that we fight a lot. Maybe she'll marry someone she doesn't love and respect as much as her daddy and I love and respect each other because she's scared to fight all the time. Maybe she'll grow up and marry someone who throws cheese (although, to be fair, I only did it once and she was way too young to remember). Maybe she'll avoid relationships for fear that she'll end up like her father and I. I don't think so though.

Neither of my kids (six and nine) has ever gotten to the stage where they say "gross" or turn away when Karl and I kiss. And we kiss a lot. We make out on the couch in the living room. We walk around naked in front of each other. We take turns caring for each other when one of us is sick. I make sure Karl always has microwavable food on hand because he no longer uses the stove. Karl picks up my prescriptions from the pharmacy.

I think as a six year old, my daughter sees my exasperation with Karl and takes my love for him for granted. She doesn't hear other couples fight and she doesn't hear about other couples fighting. As she grows up and sees more couples, I think she'll have a better understanding of Karl and I as a couple. Yes, we fight a lot. But we also love a lot... maybe even more than we fight.

Telling: It like it is

"Show me a hero, and I'll write you a tragedy." ~ F. Scott Fitzgerald

I heard this quotation off-hand on a t.v. show, and it brought Max to my mind. Max is the writer we worked with on The Telling Project. Max writes heroes' stories. Max writes tragedies. Max takes our words - words we spill out with tears, words we choke out with anger, words we chortle out with joy or surprise - and he turns them into cohesive stories. Max makes me sound funny. I am funny, but I can't write funny and I'm confused about how Max makes it so that when I tell my story, I am funny. I'd like to take credit for delivery, but Max knew what was funny before I took the words back into my mouth.

I did take the words back into my mouth. They were all my words. I read them and I memorized them and sometimes I kept them. There were things I had said that I needed to keep - words I used to describe my love for my husband, too precious for public consumption - and there were other words that needed out - words I choked out during our first performance because I hadn't prepared them during rehearsals, describing the pain of thinking my husband might not come home from Iraq.

During our week of rehearsals, I heard one woman recite over and over that her wedding was in September 2007. On our last day of rehearsals, I asked her what her wedding date was. The day she married her husband, who died from wounds sustained in Iraq, was exactly six days after I married my husband, who lives with wounds sustained in Iraq. She and I both started using our full wedding dates in our monologues, because we felt the impact of that.

I felt the impact as my husband described several of the most horrible moments of his life, one after the other, just the way they played out. I sat on stage with him, so that if he forgot his words, because he has a brain injury or because they are terrifying, I could hand them back to him, one by one, until he could remember them. I sat on stage for Karl and waited for him to come back from Iraq, like I do every day.

In many ways, he will never come back.

In some ways, he comes back every day.

In some ways, he comes back, bit by bit, as he lets his stories out, as he tells people where he has been, what he has done, and who he is. Karl carries war with him and as he lets pieces of his war out, as other people carry small bits of it for him, his war becomes easier to carry.

I am not a veteran. I am a witness. As I share my stories, I make witnesses of everyone around me. I alone cannot carry Karl's war, but if I can share it, we can carry it together and that makes it easier for me to carry too. This is why I write and why I participated in The Telling Project, so that I do not have to be alone... because I couldn't do this alone.

Fright or Flight

As we stood backstage, I listened to Karl's breathing. Then I pulled him to me for a hug. I was sitting and he stood in front of me as I laid my head on his chest and listened to his heart race. I started thinking "What are we doing? How are we going to get out of this if he starts to panic?"

He pulled away from me and sat in a chair beside me. I watched him regulate his breathing and thought about the advice we'd been given to make what happens, to make his issues, a part of the performance. I wondered if him having a full blown panic attack, something that hasn't happened in six months, would be part of the performance or if me talking him down and removing him would be.

When it was time to start, when we were cued onstage, he was fine. I heard his breathing a few times, but he didn't panic, even when he forgot his lines and I cued him. I wasn't nervous about being onstage because instead I was nervous about Karl and also chagrined because he has asked me several times throughout our rehearsals if we could take a break from performing for awhile. Last year we did the commercial for WWP (which they never used) and now we're doing The Telling Project.

The Telling Project requires more from us than filming a commercial for WWP because we did rehearsals and memorized a script (culled from interviews we gave) and then performed in front of actual people. The commercial was just us, at home, talking to two people who worked for WWP and a cameraman. Regardless, after going along with me saying yes, Karl is finally saying no. He wants a break. So we will take a break.

He did so well with the rehearsals that I didn't realize how much I was asking of him until the moment before that first performance when I was really seriously thinking about how I could get him out of there if I needed to.... which is funny because Karl always has an escape plan for if people start shooting at him. It's one of those "the caller is inside the house" moments though - it isn't a shooter that's sending him into fight or flight, it's his own silly brain, reacting to nothing. My nerves of being on stage are such miniscule twinges compared with Karl's panic of telling someone about the one of the worst moments of his life, while coping with PTSD and TBI that makes it impossible to actually memorize a script.

I am proud of Karl. I know I'm a force and I love that he has taken a stand and said he's done for a while. I'm also proud of him for sharing his stories when they pull him to the brink of panic. I know he knows it's important for people to hear what war is like and I know what a struggle and challenge it is for him to share his war with others. I admire the way he works through his panic to stand onstage and be vulnerable.

soul food

I am in Tucson on my best friend's couch. She woke me up before she left for work because today I fly home to my husband and my daughter and my eldest, who asked the day before I left if I thought it was a good idea to leave Daddy home alone with the kids.

Everything will be fine, I told them. We are now back in a place with lots of people to call if he needs help with something. Everything will be fine, I told them, after all, I haven't been at the house for more than 24 hours at a time since we moved in. Karl has been handling everything because my brother is in the ICU.

My brother is doing better, everyone expects him to live now. They're calling it miraculous, if that gives any indication of how bad things were.

On my birthday, they gave my brother a paralytic and put him in a medically induced coma.

So I spent my birthday in the ICU waiting room, eating chocolate cake a nurse who knows my mom bought for me. I offered a piece to everyone who walked by, but I made sure they sang Happy Birthday to me before they ate their cake.

On Sunday, on my way home from sleeping at the hospital again (I spent the first week straight we were in Texas at the hospital), I thought "I need something."

I went over a list with myself, sleep? church? food? Elle. I needed to go see my best friend. So I called her and then I told Karl and then I told my mom. Karl said, "have fun," and my mom said "when was the last time I asked myself what I need?"

It is a survival skill, asking myself what I need to recharge, to make it through the day, then giving it to myself. I haven't always been in a position to just get on a plane the next day, but I had the resources, so I came to Tucson.

My brother will hopefully be moved out of the ICU in the next day or two. My husband even remembered to make our kids take a bath... which he usually doesn't do when I'm out of town, but it's something I can let slide. So the kids might be dirty for a few days? It is a small price to pay to feed my soul. This time though, he even remembered to tell the kids take a bath and we are in a place where telling people that feels like bragging a little.

time

In two weeks in July, I wrote a book. I tried to compile my blog entries into a reasonable facsimile of a book, but I couldn't make it work, so I started over and wrote from the beginning, using this blog and another old journal to help me keep my timeline straight. While my kids and husband were out of town, I woke up every day and poured myself a glass of diet Pepsi and vodka and I sat outside and wrote. I laughed. I cried. I called people I hadn't spoken with in years to fact check what I was writing and to thank them, for all the large and small things they did that enabled Karl and I to get together and stay together. Karl came home after dropping the kids off with his parents and I explained to him that while we could date, I needed to continue to spend most days sitting outside and drinking vodka and writing.

I don't advocate starting every day with vodka, nor with continuing to drink vodka as the words tumble out, but that is what I did and it worked and I wrote. I couldn't drink too much, of course, or my writing wouldn't be any good. I was also wary of my writing process, because my dad is an alcoholic and addiction runs rampant in my family. Karl encouraged me though, pointing out that while our kids were gone, we were on vacation, and buying me diet Pepsi and vodka. I read him bits and pieces, to fact check, to make sure the story I was telling was his story, not just my story.

I emailed chapters to friends who volunteered to read, critique, and edit my story. I finished my book and the first round of edits. I wrote the book I've been meaning to write for years and then I came to the end and I thought, "now what?"

Now, we move back to Texas.

People have asked us why, repeatedly. The answer, for me, is that Texas is where the next chapter starts. I couldn't have written my book without all the large and small encouragements I've gotten over the years, but I also couldn't have written my book in Texas. I needed to sit outside for two weeks writing and two weeks outside in Texas in the summer is unbearable. I needed to have very few friends to schedule dates with. I needed to be lonely and alone.

There are lots of other reasons we're moving, of course, not just because I've written a book and it's time to go home, but it's true: I have written a book and it's time to go home.

We have sold our house here in Washington, our contract closes in less than two weeks. We have found a house in Texas and that contract closes in three weeks. After we're settled, I will need to dig into my next round of edits and then send my memoir to people in hopes they'll see value in what I've written, but now, it's time to go home.

it sucks

Yesterday after I finished mulling over what it means that Iraq is in turmoil yet again, I found out that a veteran I met mere months ago recently committed suicide. I barely knew him. I spent a few hours with him and his wife in New York when we went to the WWP Courage Awards. We have friends in common. He was widely admired.

I asked Karl to sit with me and brought up a picture of the man and his wife.

"Oh, I remember that guy," Karl said, which is what I had been expecting. He wouldn't have known the name but the face was familiar.

"He committed suicide," I told Karl.

"Really? Man. That sucks."

Yup. That pretty much sums it up. It sucks.

lather rinse repeat

There are numerous news pieces lately about how bad things are getting in Iraq.

I am underwhelmed and unsurprised.

Karl and I have talked numerous times about exactly how long people have been fighting in the middle east. There have been wars in that area longer than there have been civilizations there.

Karl was not in Iraq because of some personal conviction he could broadly impact the state of Iraq. Karl was in Iraq because he volunteered to serve his county.

I have seen several opinion pieces written about how the bad news coming out of Iraq will impact veterans of Operation Iraqi Freedom and Operation New Dawn. I, obviously, never went to Iraq. I never made friends with an interpreter, who believed his country could be better with America's help with such fervor that he was putting his entire family at risk of death and torture to help our soldiers. I never handed out food to old women who waited in line for hours for their share of rice. I certainly never shot a gun to protect the life of the man next to me.

However, I have given gifts. I have given a Whopper to a homeless girl in a Houston Greyhound bus station. I have given water bottles to men holding signs begging for money in 110 degree heat in Austin in August. I have picked up litter as I walked with my children through a park.

These acts are either meaningful or they are meaningless. The girl in Houston was hungry again, mere hours later, and I was well on my way to wherever I was headed, leaving her and her hunger behind. The men holding signs may use their water to hydrate themselves or they may pour it into a bowl for a thirsty dog or they may trade it for a cigarette. The park will, most definitely, be littered in again.

It makes me laugh how little control we have over how our actions and words are interpreted. We do the best we can, unfailingly. It is really all we can do.

The men and women who signed up to serve our country did exactly that. Our troops, because of motives I will never understand, tried to bring some modicum of peace to Iraq. We are not fixers. We are just people doing the best we can. Sometimes our actions have a lasting effect. Sometimes they don't. Unfortunately, we have no way of knowing.

Our service members volunteered to serve and they saved each other when they could. That is more than enough. That is something to be proud of. They made a difference, maybe not a lasting difference in Iraq but a lasting difference in the lives of the people they stood next to in battle. They made a lasting difference to their friends and families who saw them in a new light and reevaluated what to expect of themselves and others. They made a difference to themselves, earning their citizenship or college money. They made a difference to me and every single other military spouse whose loved one came home. I know my husband is only here because of the men who stood beside him, figuratively but also, very very literally.

People litter, people fight, life sucks. Those are not good reasons to stop doing the best we can every day. They are horrible reasons to reevaluate what we have done in our lives. We do the best we can. In the end, that's all we can do and it is more than enough. It is amazing. It is honorable. It is humbling.

pedestals and wheelchairs

This post contains profanity, repeatedly. I debated removing or editing it, but decided it was crucial in it's original form to the story and the spirit of the story.




"Dennis," I say, "hand me your card so we can pay."

He reaches into the fanny pack under his wheelchair to get out his debit card. He shakes and it takes a minute. By the time he has gotten his card on the bar, I have gotten my card out to pay for Karl and I's drinks. One of the other couples with us is waiting to pay and the woman of the other couple has gone with my husband to claim two tables in the back.

The bartender comes back for our cards.

"Oh," he says, "his drink is on me." He gestures at Dennis.

"Fucking wheelchair!" I burst out.

"You know," I ask the bartender, "that these men are all disabled veterans?"

Yes, he knows. He has worked the banquets the previous nights. He doesn't know that my husband drove over an IED, just like Dennis except that Dennis developed MS after his TBI, which is why he's in a wheelchair. He doesn't know that one of the other veterans in our group was shot in the head. He doesn't know, and neither do I for that matter, the story of the fourth veteran in our small group.

The woman who has gone to claim tables for us turns to my husband and asks him how long we have known Dennis.

About an hour.

A woman next to us at the bar is laughing incredulously. Dennis is cracking up.

"Look, it's okay for me to say it. It wouldn't be okay for you to say it," I point at the bartender, "or for you," I point at the laughing blond, "but it's okay for me because I get it."

The bartender neglects to charge me for Karl's drink anyway.

Later, I make sure to tell Dennis that I don't begrudge him his wheelchair or his free drink. The reason I cursed his wheelchair is that it's what everyone thinks you need to be a disabled vet.

There is a fine line between respecting veterans and putting them on pedestals. I appreciate Dennis. He is funny and sincere. I appreciate that he served our country. I don't "appreciate his sacrifice" or any other such trite dismissal of his injuries and the way his life has changed, neither do I feel sorry for him. Things happen. What happened to Dennis is that he volunteered to serve his country, his country sent him to war, he drove over a bomb, and he developed MS. It happens. Driving over bombs happens. Wheelchairs happen. Sometimes your fucking wheelchair gets you free drinks, which is probably not reason enough to drive over a bomb or even motivation enough to join the military.

I met Dennis our last night in New York. The next morning at breakfast as I walked into an elegantly appointed room on the 18th floor of the Waldorf=Astoria, Dennis spotted me.

"Fucking wheelchair," he yelled at me and we both erupted in laughter.

I said hi to his mom who was with him and she told me that the night before we had gone to the bar, she had left Dennis downstairs. Her mother called and started giving her flack for leaving Dennis alone in a strange city by himself in his wheelchair. So Dennis' mother went to look for him.

"When I got downstairs, I found him surrounded by other veterans."

Of course she did. He's one of them. They're all part of the same club and they have each other's backs. He's perfectly safe, wheelchair and all, among his brothers and sisters.

There is a fine line between putting someone on a pedestal and ostracizing them. Not here though. Not with these vets. There are no pedestals, just service dogs and brotherhood and fucking wheelchairs.

Home

Home is a funny thing. As we pass over the mountains on our descent to the Seattle airport, I look at the snow caps and think I'm home.... Then I feel a tug for all the places that I'm not. Home is Texas, where I probably won't live again. Home is being surrounded by caregivers and veterans, like we were this past weekend at the majestic Waldorf=Astoria, a place much cleaner than my house. Home is, sometimes, the 1600 square foot rambler we are returning to, but sometimes, sitting among our things, I feel heartbreakingly homesick.

 

I continuously thank Karl for serving in the military not because I am overly patriotic but because if he hadn't served, I would not have the extended family I am fortunate to be a part of.

This week, Karl and I attended the 9th Annual WWP Courage Awards. Karl packed his suit, but forgot his tie, belt and shoes.

 

I met famous people... Well, really, one famous person. I met Matthew Modine. Everyone knew who he was... Except me. I told him I didn't know who he was and he said, " you can google me." I got a little excited, not thinking about his vast acting career compared to my sparse writing career and said, "oh! You can google me!" And handed him a TBI pamphlet. I was excited that I am googleable, but I don't think he was impressed with me. I have googled him now and I have never seen anything he was in.

 

I also met heroes, scads of them, men and women who served our country, who fought for each other, and who count me, by mere fact of marriage, as family, which is a terrifyingly great honor.

 

I heard, again, the story of the amazing impact WWP has on great men and women in their lowest moments. On the way to the airport, heading home, a man asked me "you know how they take you to the hospital right?"

 

Yes, I know. I know that when you get injured in war, they cut your clothes off you and deliver you nude to whomever will continue to save your life.

 

"All I wanted," said the man before me, "was a pair of clean underwear."

Then someone walked in his room holding a backpack and in the backpack were clean clothes.

"And I said, 'What organization are you with?' Wounded Warrior Project. That was 10 years ago, in the beginning, and I've been involved with them ever since."

 

Under Armour has taken over the backpack program in conjunction with WWP and Under Armour was the recipient of The Talkhouse Award for Community Service this past week at the WWP Courage Awards.

 

Above all else, though, I spent four days in New York City at a family reunion, which is what WWP events feel like to me. The alumni and caregivers are our people. The people who work for WWP and have served themselves, the ones who don't stand up when everyone who has served our country is asked to stand, they are our people too. One man, who works for WWP, loaned my husband a pair of shoes then took off before we could return them. In many situations this would be horribly embarrassing, but instead, it is funny, because we know he gets it. He gets how easy it is to pack a suit but none of the accessories when you are living with a brain injury.

I saw several veterans, caregivers, and staff I have met before and I met several new "family members." If home is where the heart is, my home is no single place. Instead my home is everywhere these people go - the people who make up my tribe, the people who get me, who get Karl, who provide us a safe place to be broken and a safe place to work on being whole.

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.

today is an anniversary

I don't know how many posts I have started and abruptly abandoned over the past month. Days have come and gone that I refer to by men's names - Jesse day, Chevy day, Clint day, Brandon day - alive days and death anniversaries.

On Chevy day, Karl and I were at Ft. Lewis so we stopped by the memorial there. As we approached the memorial, I saw roses. They were not there for Chevy. The roses were for a young woman who died years after and the day before Chevy.

 

 

Every day is an anniversary. Every day is a day someone died in Iraq or Afghanistan over the past decade.... or a day someone lived.

 

I have not named today. It is not a day Karl remembers in particular. It is just a day when we are alive and safe. Today is a day, just like yesterday and the day before. If you ask Karl, today is an anniversary. It isn't a named one, but every day is an anniversary of the 27 months total that Karl spent in Iraq.

 

Sometimes it seems tedious to write about Iraq and our lives. I feel like I repeat myself often. Sometimes I am exhausted with what else to say about war and death. I check out books at the library titled WAR and Thank You For Your Service, written by men who have been embedded in war zones.

I am not embedded in a war zone. War is embedded in my house. Eventually, it is normal. It is the color on the walls, the creaky floorboard in the hall, the weeds in the yard. It is a nuisance, but it is a background nuisance. It is the jump into a defensive crouch when our five year old surprises his daddy, it is the ever-present smart phone as a back up brain, it is the way he walks, the way he talks, it is Karl.

another day another doctor, part 2

Yesterday I went with Karl to see his neuropsychologist. She wrote off all the research I've done about TBI causing neurodegeneration. She is of the complete opposite opinion that mild TBIs don't often cause long term damage.

I asked for studies to prove her side. I asked where she would look for studies to support her.

"Well," she said, "I would start with PubMed."

"Have you ever heard of The National Center for Biotechnology Information?" I asked, referencing the website where I pulled all of the TBI and concussion studies in my pamphlet.

"No," she said, "I haven't."

Late last night I was having trouble sleeping. I started second guessing myself and the research I've done. She seemed so sure that mild TBIs don't cause long term damage. She explained that pain can cause decreases in memory and attention . She explained that PTSD can cause decreases in memory and attention. She explained that PTSD and chronic pain combined can certainly cause deficits and that it is impossible to know exactly why Karl has memory and attention problems.

At times she seemed to hear me and understand my frustrations, although she seemed completely flabbergasted that I have no hope Karl will get better. She wanted me to have hope. She wanted us both to believe Karl could get better. So we explained, patiently, that when we expect his brain to work, we are disappointed in devastating ways. I cried, frustrated that she wants me to believe he will heal when I have watched him steadily decline for seven years. She brought up the speech therapy he's doing now. In her defense, she honestly believes that the memory training they're doing twice a week for an hour will make a difference. It is not making any noticeable difference, but I suppose it might..... I doubt it, but it might. My best hope is to stop the decline or slow it. The neuropsychologist wants us to fix it. (Even the civilian doctors tell us it is unfixable.)

We talked about the accommodations Karl already makes. We talked about how Karl seems so normal because he is very intelligent. We agreed on several points. She seemed very reasonable, which is why at midnight I went and looked up PubMed, where she said she would start looking for studies... especially since she had never heard of The National Center for Biotechnology Information.

I discovered something that both amused and saddened me.

This is the web address for PubMed: http://www.ncbi.nlm.nih.gov/pubmed

It is hosted on The National Center for Biotechnology Information (http://www.ncbi.nlm.nih.gov), which the neuropsychologist has never heard of. I hope she discovers that when she goes to pull up studies for me to look at to support her position. I hope she is chagrined. I hope she feels foolish. I hope she is willing to give the information I gave her a more thorough look, putting aside her preconceived notions. I hope she is willing to second guess herself after our conversation as I second guessed myself.

it's not fair

Our relationship isn't fair.

This is obvious - one of us doesn't use the stove and the other one handles all the bills and appointments. These are just easy examples of our unbalanced relationship. I am a caregiver, but in many ways, I have the better deal.

I have a spouse who asks me before he makes almost any purchase, but I buy whatever I want (although I often do consult him if it's something expensive). If my husband is sitting on the couch doing nothing, I question him about what he's doing, but he encourages me to relax and take a break or take a nap while he handles things. I have a husband who will go out of his way to make sure I am happy and comfortable. My husband has a wife who goes out of her way to make sure he's doing what he's supposed to be doing.

My husband is nicer than me. I wouldn't say he's more considerate or more thoughtful, but he is nicer. I am not nice. I am thoughtful and considerate, but I'm not nice.

Part of being a wife is taking care of Karl, which I do and do well. I am not nice about it though. I make sure he does what he needs to do, which means I remind and remind and remind and harass and harangue. I nag. I write notes and send texts and call to make sure he's doing what he needs to do. I micromanage. I interfere and referee. I tell him, often, to apologize.

I do not doubt that Karl functions much better because of me and because of my help. I know I make an enormous impact in his quality of life - I enable him to take classes at school and to parent our children in a respectful way and to function daily in our society - but still, I am not nice.

It must be exhausting to have a spouse who views you as work, who is constantly trying to make sure you are functioning at optimal levels. I wouldn't know. I do not have a spouse who takes care of me. I have a spouse who cares for me, which is entirely different.

Another day, another doctor

"I just want you to know, in terms of the brain injury, there's nothing we can do."

Karl and I nod.

"We know," I say.

"I just don't want you to think we can do much."

"You don't want to give us false expectations," I say. "We know."

She refuses to take my TBI pamphlet, letting me know she won't have time to read it.

I don't mind because apparently she is already familiar with the idea of neurodegeneration. She wants to get Karl's neuropsychology and speech pathology notes to see what they're doing for him, but she doesn't have anything else to offer.

She also wants to see any X-rays we have. She asked if he has ever had steroid injections in his back. She confirms that the notes on his X-rays mean that he has degenerative arthritis in his spine.

"A lot of people do," she tells us, explaining that she isn't sure it is a good enough reason to give Karl a handicap placard for his car. She signs an order for a two month temporary disability pass. This is long enough to allow us to get another appointment with his VA doctor, who is supposedly more familiar with Karl's issues.

Hopefully, the VA primary care doctor will give Karl a permanent disability placard... if I don't leave the room, if I make sure Karl talks about the pain he is in constantly, if I bring up the X-rays that doctor ordered. The civilian doctor today also mentioned that they usually do MRIs for severe back pain, so now I know to ask for one when we go back to the VA doctor.

"He's only 30," the doctor said today.

"We know."

We know he is young, but he is not. For Karl, 30 doesn't look like 30 did for me. I am 31 and I feel young. I can sit or stand for long periods without any pain. I don't wake up in the morning listening to my bones grind and pop against each other. I don't turn my heated car seat on regardless of the weather to ease the ache in my back. I do not limp at the end of the day. I still enjoy road trips when I spend 6 hours in the car at a stretch. After all, I am only 31. Karl is not only 30.

One doctor, years ago, told him he had the life experience and body of someone over twice his age. Karl remembers this because it resonated with him. He is not like other 30 year olds. He has a degenerative brain condition and a degenerative body condition - medical studies and doctors tell us he is falling apart and there is nothing they can do to stop it. His age is not a defense against his symptoms. His back doesn't hurt less because he is 30. He can't remember where he is because he is 30.

I think what the doctor meant today is that she sorry, but she doesn't believe he is in that much pain. Maybe she believes that although there is nothing to do for his mind, his body could get better. Maybe she meant he has a long life ahead of him and he should just get used to the pain.

When Karl drove over a bomb, he was only 24. It didn't save him.

"I want you to know there is nothing we can do."

There is nothing anyone can do. He drove over a bomb.

a love letter to WWP

Last night on the way home from California, I turned to Karl to tell him "thank you," and I was suddenly overcome with emotion. I couldn't get the words out because I was fighting the urge to cry. I was just trying to say that I appreciate that he is my sidekick and goes along with my crazy schemes.

I live my life by the first rule of improv. If you google "first rule of improv," you will see lots of variations on a theme. The first rule of improv, as I understand it, is: Say yes. I don't do comedy (although I like to think I'm funny and I especially like people who think I'm funny), but I agree to things. Karl, bless his heart, goes along with me when I say yes.

Last fall, I got an email from a woman at Wounded Warrior Project (WWP), who had gotten my name from another woman, who wanted to know if Karl and I would be interested in filming a commercial spot for WWP. I said yes, of course. Actually, my first email literally said only "of course!" Then I told Karl.

Karl was less than enthusiastic. In fact he complained about it up until a three person team showed up at our house with cameras. Then he stopped complaining long enough to be interviewed. After they spent three days interviewing us and filming our daily lives, they left and Karl continued complaining. I was recently told that they have seen the first rough cut of our commercial. Karl complained. While he's complaining though, he's going along with me, doing whatever it is I signed us up for.

Most people I know only know about the retreats WWP does, because those are the things I have been fortunate enough to do as a caregiver. My husband didn't come home to a hospital and I had no idea about the peer support WWP offers until we had been in counseling for years, so the things I talk about experiencing with WWP are retreats.

The retreats I have been on have been invaluable. I have met women who are like sisters to me, who know what I'm talking about, who get me. The first retreat I went on was a writer's retreat. It was perfect timing for me as an essay I had written in a book was in the process of being published. It was also perfect timing because I was learning to let go and take time away for myself (something I have since become very good at). I met women from all over the US who were in various stages of writing - some wanted to be published eventually and some wanted to learn to journal and some hadn't written anything but their names since high school. We hung out with published authors and playwrights, who told us to write. We split into small groups of caregivers and mentors (published, experienced writers). They encouraged us to find our voices and to let them out in whatever way was most comfortable for us. The weekend was filled with tears, but also with laughter, lots and lots of laughter.

It was so freeing for us to be able to make jokes about brain injuries and amputations with other people who would laugh about it. It was also eye opening for the writers who served as our mentors. They had no idea what communications home were like and as we compared the phone availability in 2003 to the phone availability in 2009, they said, "write about it!" So we did. We wrote about phone calls home and how often they came and how much was said or left unsaid. We learned just how little the average person knows about what we think is normal.

I had known before going on the writer's retreat that I wanted to write about my experience as a caregiver for a disabled veteran. I had already started writing about Karl's traumatic brain injury and how it affected us. I didn't know just how much I had to say though, until I sat in front of a yellow legal pad with 15 minutes to address writing prompt after writing prompt.

We got to go back six months later for another round. The second weekend of the retreat fell on the weekend we closed on the sale of our house in Texas. I was so sad. I desperately needed that weekend away, not only because I needed to write, but because I needed to see my people. I had only seen these women (and one man!) of my small group once, six months prior, but they were my people. They got me and they liked me and they let me cry as I wrote this time about leaving Texas behind and moving to a place where I knew next to no one. They reminded me, with their friendship, that I can make friends anywhere and that I have friends everywhere, even when I'm feeling lonely.

Months after we moved, we were all having a rough time. One of the women who works for WWP emailed to ask me how I was and I emailed her back, unloading about what a tough time I was having. She found my daughter a therapist with Give An Hour, which provides free counseling services to military families who need it, and put me in contact with my local WWP office. I was then invited to go on a spa retreat. I wrote after the spa retreat about how nice it was to have an evening of being normal.

When we were asked to do a commercial for WWP, they wanted to focus on what I, as a caregiver, had gotten from retreats. I have no idea (since our commercial isn't yet finished) how much of our commercial is about what WWP has done for me and how much is about what I do on a daily basis caring for Karl.

This past weekend I went on another big, flashy trip with WWP in Los Angeles, California, being pampered and spoiled. The women who accompanied the cameraman to our house in December invited us to go on a weekend trip with other couples and individuals who had filmed commercials for WWP. It was a way to thank us. I said yes almost immediately, after making sure my mom could take care of our kids for the weekend (thanks mom!), then told Karl we would be going to LA. He complained about it up to and including the night we got there.

Our first full day in LA included the WWP Style and Beauty Suite, our first event. We spent the day receiving presents like glass water bottles, slippers, jewelry from companies who were there. There were also spa services like facials and massages. By the time the event was complete, Karl had stopped complaining and started saying thank you to me for signing us up. He thought it was "weird" to receive gifts and he told this to most of the company representatives there, but he loved getting a massage and a close shave with a straight razor.

Our next day in LA was spent on a studio tour where we got to sit on a couch used by Friends in Central Perk. Karl and I dated during and after high school on and off again, when Friends was on. In one episode, Phoebe tells Ross that she knows he and Rachel will end up together, because he's her lobster. (YouTube video here.) This is Karl and I's thing, or one of our things, he's my lobster. Our wifi network is named lobster. I once got him to guess Friends during Pictionary by drawing a lobster. So it was really cool for us to get to sit on the Friends couch.

Our last day in LA we got on a bus to drive around and look at famous people's houses. The best part of this tour was when our bus driver pulled over to point out the most visited house in LA.

"Something big happened here five years ago," our driver said.

Silence.

"I'm not leaving until someone figures out whose house this is," our driver said.

"Come on, man," yelled Karl, "I've got a brain injury!"

The whole bus cracked up. This was the best moment for me because not only could Karl make a joke about having a brain injury, but he was surrounded by people who laughed with him. There was nothing uncomfortable or hesitant. They got it. It was awesome.

Sunday night we went to an Oscars party. I, through the power of google, was able to predict the second most correct winners at the Academy Awards, so I won a guitar. It was a nice guitar, specially designed for smaller hands and frame, billed a "girl guitar." Our eldest is left handed, so even if they were interested in playing the guitar (nope), it wouldn't quite work for them. As we got back to the hotel I started chatting with a veteran who works with another nonprofit that gives veterans guitar lessons. I happily donated the guitar to her cause.

I love the connections I have made through WWP. I love the sense of community. I love the family reunion feeling I get when I meet people who get us and what we're going through. I love being able to give back to this community through the TBI research I compile, the guitar I was able to pass on, and the writing I do - telling their stories to what I hope is a wider audience. I love the feeling of interacting with the WWP staff who all seem to genuinely care about me, my husband, and my children and who will help us or put us in touch with someone who can help us, regardless of our needs. I love the stories I hear through interacting with everyone at WWP events.

The best story I have ever heard about WWP is one I hear again and again and I'd like to tell it now, especially to people who question what a difference WWP makes.

Imagine a soldier who has been severely wounded and airlifted to a medical facility. This soldier has been burned or had a limb detached in the field. Their uniform, covered in blood, has been cut off their body. They are now recovering and they have nothing. They have a hospital gown that opens in the back. They don't have any of their comrades with them. They don't have any of their uniforms with them. They are struggling to hold on to their sense of self and their sense of dignity. Then someone brings them a backpack and a pair of shorts and a t-shirt. It is the first gift they will receive in their new role and their new life. It is from Wounded Warrior Project, who further promises to be there throughout their recovery. Wounded Warrior Project will put them in touch with peer support and adaptive support. Wounded Warrior Project will put their spouse in touch with peer support. Wounded Warrior Project will not leave them behind and will help them find a road map to their new life.

I would like to personally thank WWP staff Dana D., Dana B., and Ashley M. for the difference their presence has made in my life. There are so many more (Danielle D., Jamie Y., Aimee F., Aaron R.), but it is impossible to list everyone, so I would just like to thank everyone who works for and with WWP for the difference they are making in the lives of my family and my extended family - everyone who has served and sacrificed and their families. It is nice to know we are not alone.

they laugh in the face of danger

"I reached for my gun but my flesh slid right off."

I shivered as the young man in front of me continued his story. He was injured 10 years ago, the same time my husband was on his first deployment to Iraq.

His story is his and he tells it with humor and grace, laughing as he recounts flopping around like a seal while in recovery because he couldn't get his hands under him to lift himself up. I say "young man," but I am guessing he is my age. He isn't old, but the majority of his life is post-injury, with scarring on his face and arms.

Another man yesterday told of the time an RPG hit his Humvee. He kept reaching for the door with his right hand, then finally moved his left hand to where his right arm should have been. It wasn't there any more.

I am in awe of these men. While I never joined the military, it isn't their service that humbles me. It is watching them laugh. The man with the scarred face makes jokes about a meth lab explosion. The man who lost an arm cracked up an audience recounting the look on someone's face as they realize they've lost a golf game to a one armed man. Yesterday a man in a wheelchair and I laughed about how he's smarter than me because he brings his own chair everywhere.

After tragedies, Americans so often get caught up in heroic actions and the indomitable human spirit. These are the things I see when I look at these men, more than their scars. Their scars do not define them, but they are part of them. What defines them is the grace with which they lead their lives.

I am humbled and honored at living my life serving one of these men. Every time Karl says, "oh brain," in response to a mental lapse, I know we are okay. As long as we can laugh, we are okay.

I feel uncomfortable with the word hero and I know many soldiers do too, but heroes are the ones who run into danger. Heroes are the ones who conspire together during lock down drills to go find the invisible shooter. This is my husband. These are his people: the ones who have been trained to save the rest of us; the ones who laugh in the face of disfigurement and degeneration.

Seasons

Cookie season has started. I have been Cookie Mom for the past three years and I volunteered again this year. My eldest loves Girl Scouts and I love who they are in Girl Scouts, so I handle cookies. I pick up the orders for the entire troop and dole them out as needed. I write receipts for cookies and cookie money and pick where our troop will have booths. I make sure our booths have enough cookies. Then I take my child from door to door and business to business so she can sell cookies.

Last year they sold 500 boxes of cookies. This year they are less than enthused about selling cookies, which they blames in part on her diagnosis of Celiac disease. Since they can no longer eat cookies, they don't want to sell them they say. I understand, but I don't. Cookie sales aren't about the cookies, they are about a way to earn your troop money to do cool things. Cookie sales are about earning money for the council to be able to send girls who can't afford it to camp. So I am disappointed that they aren't excited about cookie sales because it is something they used to love. I am disappointed because it was something we did together. I am questioning my commitment to helping girls sell cookies if my child isn't interested and then I am disappointed in myself for losing interest in something I have been very passionate about for years.

February just feels like disappointment to me. February seems especially unhappy this year and not just because Grandma B died. Karl's memory seems worse, but it always seems worse so I'm not sure how to tell whether or not it actually is worse. I think maybe February isn't the month for us... which makes me wonder what month is the month for us.

I think summers are okay. No, no they aren't. Summers are when Karl is out of school and grows bored and frustrated with himself. Then he is depressed because he is bored. Then he is mad because he is bored and depressed. Then he is rude and snarly and no fun to be around. I send him to the park with the kids and I sit home savoring the quiet. I miss my solitude fiercely when everyone is home from school for months on end.

I get frustrated with taking the kids to the farmer's market on the weekends, because they want to play on the playground and babble incessantly while I am trying to pick organic produce. I can't decide which shade of red apples will make them happy this week and whether that shade of red apple that is certified organic is worth three cents more a pound than the lighter shade of red apple that is organic, but hasn't finished the certification process yet. I can't remember if my daughter likes Pink Lady or Gala better and I know my eldest doesn't care about the variety, just the depth of the color of the skin. Karl will take the kids off my hands so I can pick onions and potatoes and smoked salmon and sausage, but then the kids will whine and yell that they just want to be with me and eventually we will get home and I will have forgotten to buy any apples at all and I will wonder why we ever leave the house.

 Maybe late spring is best for us. No. Late spring is when Karl moved to Baqubah in his second tour. The funny thing (not the kind of funny that makes you laugh, but the kind of funny that makes you cry) about being married to someone who was in battle, is that I can look up dates I don't remember. March 10 is when Karl moved to Baqubah, where the worst fighting of his 27 months in combat took place. March 10 is approaching quickly, which may explain why February seems to be dissolving into anger.

Easter is when Jesse died, which is doubly unfortunate because both April 8 and whatever date Easter falls on each year are shadowed with thoughts of death. Easter may be about resurrection for many people, but not for us. I don't even know the death dates of the guys from Karl's first tour. I know that his friends' death dates start in March and extend until November, which is especially hard for us.

One day when Karl was in an especially volatile mood, I asked him if anything had happened on that date in the past.

"The problem," he said, "with trying to figure out secret anniversaries is that every day is one."

February is not the problem. Every day is the problem.

Happy Valentine's Day

In my kitchen is this ugly wreath. It is a heart-shaped wreath of dried flowers.

 

When I received this wreath on Valentine's Day 2007, I was a little baffled. If you're going to send your girlfriend something from 1-800-flowers for Valentine's Day from Iraq, wouldn't you pick roses? Everyone sends roses. Maybe you'd send daisies or carnations if you were on a budget, but a wreath? A dead flower wreath?

There was a note with the wreath:

I can't wait to hang this in our house together. I can't wait to move in with you. I love you.

Karl called me that day and asked if I had gotten his gift. I laughed and teased him about it. He asked if I read the note. Yes, I told him, it was very sweet.

 A year and a half later as we packed up to move from Washington to Texas, Karl looked on incredulously as I wrapped the wreath in tissue paper. The wreath hung in our dining room until I wrapped it back up to move it back to Washington. When we were going through things, discarding books, clothes, knick knacks, trying to pare down our possessions to fit into a smaller U-Haul, I delicately wrapped my wreath in tissue paper and taped it into a box marked fragile.

I don't think Karl understands why I keep the wreath, which I still laughingly maintain is a better gift for a grandma than a girlfriend, but I keep it anyway.

I tease him about the year I gave him a solid chocolate heart. I put it in his car the night before so when he left for work at five in the morning, he would be surprised. The chocolate was frozen solid, but he decided to eat it anyway. It knocked one of his baby teeth loose.  For years after that, I gave him chocolate milk for Valentine's Day, but now he has dental implants and this year I gave him a Reese's peanut butter heart.

Valentine's Day isn't about roses and chocolates, no matter what the television says. It is more about dead flower wreaths and knocked out baby teeth. It is about me washing the dishes because my husband is in Louisiana for his grandmother's funeral. It is about my husband writing "PREP FOR" on February 13 on his white board, because that takes some serious thought on his part - to remind himself to think about me is an amazing gift. Although he also got me a beautiful purple scarf.

Grandma B

My grief over my husband's brain is raw and angry and recurring. It lies dormant only to burst forth in a torrent of tears and curse words. It is my friend - a back up emotion when I am too shocked to feel. I am comfortable with my angry grief.

For the past two days I have been experiencing a different kind of grief. Instead of the fire of one thousand suns, this grief is like fog or mist. I am grieving for my husband's grandmother. She was 86 and she had a stroke. She died surrounded by loved ones. I am absolutely positive that if you asked her to name her 20 closest relatives, she would not name me and I am okay with that. I adored her though.

She could break a banana in half, which was even more impressive before you discovered that she would score the banana peel with her thumbnail before breaking it clean through.

My husband and I would make a game of trying to pay for things for her. She hated to let anyone pay for anything so you had to be really tricky. Once Karl put her bananas on the counter with his things before she noticed. She fussed at him afterwards, but he managed to spend 40 cents on her. Another time Karl and I were replacing her shower hardware and somehow, in the trips back and forth to the hardware store, I managed to buy her a four dollar tool. I was inordinately proud of myself.

When I met Grandma I was already married to Karl by about two months and I was about a month pregnant with our second child. Our eldest was two and extremely shy. As we were leaving Grandma's house, my mother-in-law encouraged my eldest to give Grandma a kiss. My eldest got a look of horror on their face - the kind of look only a small child faced with having to kiss an elderly relative can pull off. As my mother-in-law prodded my child, her mother said, "Leave that child alone," and won my heart. There is nothing, nothing so endearing to me as someone who will stand up for my children. My mother-in-law was well-intentioned and I wasn't angry with her - it was just nice to hear Grandma take my child's side over anyone else's. I was too new to the family to feel comfortable saying anything about kissing Grandma.

When our daughter was two and we went to visit Grandma, our eldest had warmed up enough to hug her goodbye. Our daughter is not shy and she is a hugger and a kisser. So when it was her turn to hug Grandma goodbye, she went for a kiss too. Grandma turned her head so she could have her cheek, but she turned her chubby cheeks to kiss her on the mouth. My mother in law told me later that Grandma didn't kiss anyone on the mouth.

That may have been the same visit that our eldest poured my new purple nail polish all over the guest bed at Grandma's house. I was mortified and offered to buy her new sheets, but, of course, she refused to let me buy anything.

I only saw Grandma once or twice a year, especially since we've moved across the country. I rarely spoke with her on the phone, but I could always tell when Karl was on the phone with her because they were the shortest conversations.

"Alright Sugar, love you, you take care," she would say when she was done with you.

We saw her a few months ago, leaving our kids with my mom because Grandma was nearly blind and our children are very active. We only stayed for a night. We watched Antiques Roadshow and a few cooking shows. I know we chatted but I don't know about what. I know Karl took pictures of her to make a portrait from. I do remember one thing she said to me.

"I love your children, but they don't mind."

Every time I think of it, I bust out laughing. Of course my children wouldn't mind, by the time we get to her house they have always been in the car for at least three hours. I have heard from one of her five kids that he didn't mind as a child either. I love that she always thought she was right and that she always had an opinion. I love that she told me my children don't mind.

I really loved her and I am sad I won't see her anymore.

Jonathon

"How much do you need for a book?" Karl asked me. We were sitting on the loveseat and my feet were draped across his lap as I read him a blog post I had written about him.

"Why?" I asked, then realized, "You want me to stop writing about you?"

"You shouldn't."

"I will if you want me to," I said, crying prettily, one tear sliding down my cheek.

"No," he said, adjusting his cap, "you shouldn't."

Even if I had enough for a book, then the book would be out there and his stories would be everywhere and he would be more exposed than he is now. Even if I had enough for a book, I would keep writing.

I told him that I had been chatting on facebook with his best friend from high school. I read him the messages:

The fondest memories I have of Karl and I were the carefree days of hanging out, riding bikes, listening to music and reading comics, along with whatever stupid whims came to mind.

Reading your blog is extremely eye-opening to me, and it rips my heart out because that man isn't the little guy I grew up with and remember so fondly.

There was no transition period. It was just Jonathon, then after a long period of time, it was a grown man who had seen war and been radically changed by it. Going from one to the other like that is heartbreaking. 

"Yeah," Karl nodded, "his mom cried when I saw her at his wedding. She asked me what Iraq was like, so I told her. Then she started crying."

I guess that's why I write, why Karl thinks I should write, not to make as many people as possible cry, but to let them know what happens. Jonathon is Karl's middle name. It's the name he went by from birth until the Army. Even though I met Jonathon in high school, I have not known Karl since then. Karl didn't exist. Karl is a "grown man who had seen war and been radically changed by it."

Jonathon was quick. He was a classic gifted underachiever, one who made Bs and Cs in high school with a bare minimum of work. He was funny and good-natured. Everyone liked him. People like Karl and Karl is funny, but he isn't good-natured. He is grumpy. He is sad. He couldn't pass remedial math with any amount of effort. He is not who he was.

He took pottery last semester but couldn't finish the required amount of work in time. The instructor, who is amazing, is letting Karl have this semester to finish his bowls and morphic vessels. Actually, when he gave Karl the incomplete, he told Karl he could have until midterm to finish his pieces. When midterm hit and Karl, despite all his time spent in the studio, had almost nothing new, the instructor extended his deadline. The day before his pottery instructor extended his deadline, Karl told me he didn't even know why he was taking pottery.

"I know. You're taking pottery because shards of pottery are how people know civilizations existed," I recited what he had told me six months ago about how excited he was to be taking the class. "You're creating things that will exist after we've died. You're making things that will be passed down and held onto and one day dug up to prove you existed."

I think he lets me write about him, because he wants a record of what's happening to him and what has happened to him. I write to prove he was here, even as he disappears. It's as much for me as for him or for anyone else. I want proof he was here. I want a record of how much I loved him when he was putting knives in the blender.

It seems so silly, because women always ask "How do you do it?" or better, they sigh that they "just couldn't do that," but they could. They just don't want to imagine it any more than I want to imagine being a woman in Iraq whose husband is suffering just as mine but who doesn't have the resources I do. There are spouses everywhere who are watching their loved ones disappear through Parkinson's or Alzheimer's or brain cancer or TBI. They signed the same papers I did.

It's just what happens sometimes... except that in our case sometimes meant during a war started by war profiteers. In our case, nature didn't just take it's course. In our case someone used a national tragedy to ramp up patriotism and start a war for profit. In our case someone decided that my husband and thousands like him weren't as important as money... and that is why the government really pays my mortgage every month. It is blood money for Jonathon.

I know that there are some people who believe we needed to go to war in Iraq. These people probably wouldn't appreciate the jokes Karl and I make about Team America: World Police! I don't know whether or not we helped in the end, although Karl believes we helped the oppressed groups. I don't believe that the war in Iraq was ever about protecting the US... unless you mean protecting our oil interests. I don't believe that anyone who wanted the war has ever had to pay the price for it and I don't believe that people know what the cost of war is.

I grew up in an extremely liberal household in Texas. I was anti-war from birth. I knew what PTSD was, not because I knew anyone who had it, but because my mom told me about Vietnam. So when Karl and I got back in touch before his second tour, I thought I was prepared. After his second tour, when we moved in together, I expected occasional angry outburst and nightmares. I knew war took a toll.

Karl has very few angry outbursts and his nightmares rarely wake me up. He checks for snipers and exits. He is agitated in crowds. He interprets litter as bombs. He wakes up in the middle of the night to fight with intruders who don't exist. I expected something similar, although I didn't appreciate the scope. These things are so normal though. If you are conditioned that someone is always after you, then you will act as if someone is always after you.

What I was completely unaware of and unprepared for was the brain injury. I think a lot about how Karl called me to tell me he drove over a bomb. Even now when I tell other people that he drove over a bomb, people are shocked that he is alive. I guess alive or dead were the only possible outcomes when he drove over a bomb. There was no "all of the above," but that's exactly what it is. He is alive and he is dead. He came home but he never did.

I don't write for Karl or I. I write for Jonathon, because he certainly deserved it. He deserves someone recognizing that he is lost. He deserves to have his story told.