I Am Stronger Now

“We'd been apart so long--I'd been dead so long," she said in English. "I thought surely you'd built a new life, with no room in it for me. I'd hoped that."

"My life is nothing but room for you." I said. "It could never be filled by anyone but you.” 

― Kurt Vonnegut, Mother Night

The other day I was sitting and reflecting on the deployment.  THE deployment, the one that shook my world and ended who I thought I was.  I was sitting and reflecting on moments that I had somehow forgotten had even happened... Somehow, I seemed to have forgotten lost phone calls and the few letters I had gotten.  

In a very strange way, I knew that whoever it was coming home, just didn't seem to be my husband.  It wasn't anything specific, it wasn't anything he said or did, it was just a feeling I had had.  And when I saw him for the first time it was like looking at a stranger.  He stood differently, he walked differently, his voice seemed odd.  There was no familiarity in the way he kissed me for the first time in year.  

We make excused, we spouses of those with PTSD.  It's one of our greatest talents.  The kiss was different because I had inflated this moment to be something more grand that it could ever live up to.  His gait has changed because of months of hard living in the desert.  The truth is, we all know something isn't "right" pretty quickly, but no one ever wants to be the spouse who's husband came home "broken by war" as it is often said.  

We have grown so used to it being shameful.  The secret that we all keep, the lie that we all tell, the life that we "don't" live.  We grow weary of explaining why we stay, of making excuses to those who won't understand and facing a world that has more misconceptions about PTSD than truth in it.  

The reality in my world is that I spend at least one day a week crying because of something he has said to me.  I spend at least one numb from the hurt of our life and another resolved to not give up and yet another resolved to quit.  But I love him and there is no other person who is better suited for me.  And this life has made me strong. 

I am now able to stand my ground against a man who used to easily sway me.  I am able to fight for the life we deserve against someone I love who is supposed to be building it with me.  And I am able to live my life each day the way that I want to because he isn't going to support my choices anyway, so why not do something that makes me happy?

It would be so easy to give up.  No one would blame me for leaving.  No one would hesitate to tell me I've done the right thing, I was in a terrible situation, I am stronger for being able to leave than to stay.  I would find that being able to openly tell others what was going on would bring relief and they would suddenly understand all the cryptic cancelations and flimsy excuses.  And in so many ways, my life would be so much simpler. 

But I wouldn't be stronger.  I would end up with another person who I was easily swayed by (not to say my husband used his power for evil).  I would continue to be a person who never fought for what she really wanted because it's easier not to, because keeping the peace is more important.  And really, what kind of life is that? Peace at any cost is no way to live. 

So, I live with a man who is easy to love but hard to stay married to.  I stay with him even though he can't love me back.  I fight battles that would be easier left alone because some battles must be fought.  I walk into situations knowing I can do no right, I will never win and yet I stand in the fire and refuse to let it burn me.  

There is no room in my life for someone else.  And I look at our life, tough as it is, and know that it is the one I was meant to lead for every path we have taken, ever obstacle I have overcome, ever battle I have fought and every tear I shed have led me to be someone I never thought I could be. 

Learning To Stay Post and Giveaway

I have had the fortune of having a truly amazing guest poster today.  Though I have never had a guest post, I feel honored that my first one should be written by Erin Cello, author of the book Learning to Stay, which chronicles the journey of a woman while she learns how to cope the the TBI and PSTD her husband returns home from Iraq with. 

She has been amazing to correspond with and has graciously offered up a signed copy of her book as well.  (details to enter are after the post)

***

Writers are always told to write what they know, but I haven’t really ever heeded that advice.

I started writing my first book, Miracle Beach, where a couple grapples with the loss of their child and the eventual dissolution of their marriage, when I was only 26 years old – years before getting married or having children was a blip on my radar. And in Learning to Stay, I write about a woman’s struggle to decide if she should stay married to her husband, who has returned from the war in Iraq with a traumatic brain injury and post traumatic stress, even though I don’t come from a military background.

So, I did not have that sort of personal experience to draw upon. That said, what I did have – aside from researching the issue through a vast network of military spouse bloggers and conducting interviews – was a brush with death that my husband had less than a year after we were first married.

In November of 2008, my husband went to the hospital with what we both thought was a terrible cold – pneumonia, even. We thought he’d return home that night. Instead, he was admitted to the intensive care unit, diagnosed with H1N1, and put into a coma for nearly a month, during which time his organs began to fail and his team of doctors offered little in the way of hope. My mind ran wild: even if he did come out the other side of this ordeal, which was unlikely, would he be able to do all that he used to? Would he need a kidney transplant or would the proximity to a dialysis center dictate our decisions and travels for the rest of our lives? Would his mental capacity be diminished because of the oxygen his body struggled each minute to take in? Would he ever be able to hold down a job after the toll the virus was taking on his body? What was the most I could hope for?

That was the million-dollar question; and also the one most impossible to answer. And so, I woke up every day of that month and hoped harder than I had ever hoped before simply that the doctors would provide me with a more certain vision of my life, my future. Our future. But if they held some sort of crystal ball, it was filled with mud. They wouldn’t say if things would be okay, or if my life would take a 90-degree turn upon my husband’s waking, or if he was even certain to wake at all. They couldn’t say, because they didn’t know.

It doesn’t take much for me to accurately remember the uncertain anguish of those days. The feelings I had are visceral and frightening to me still. And I drew on them often as I wrote Learning to Stay. Each night of my husband’s ordeal, while he was locked in a coma and I was desperate to talk to him, I wrote him a letter instead. Earlier drafts of the manuscript actually have Brad returning home much more seriously injured than in the final, published book, and in writing those scenes, where I originally placed him at Walter Reed Medical Center in a coma, I often referred back to the letters I wrote to my husband. In them were so many questions and so few answers, so much hope and so much fear. In them, I was already pining for a life that should have been – a life and a future I thought I was owed, and would never see materialize. I remember two reoccurring thoughts that kept me company during those days: We haven’t even been married a year, and It’s not fair.

Although the final version of Learning to Stay doesn’t reflect or include any actual details pulled from my husband’s harrowing medical experience, the feelings that Elise experiences as she deals with this new Brad who has returned home to her springs directly from my own life. Her grief over the new normal she is confronted with, her shaky steps forward down a barely-there path, those things ring true for me – and, I hope, for readers – because those were the same shaky steps I took. Her story, in that way, is infused with mine. And I hope that because of this, her story is all the better for it. 

***

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How Do I Feel Today?

Do you ever feel like you have something burning inside of you that you just need to get out, but that you can't quite put your finger on?  I've always gone in and out of posting here consistently, but the last few (10) days has been because I can't seem to put into words what it is I'm feeling.  Is it hope? Fear? Is it cautious optimism? I don't know.

Things have been more up and down than usual.  One day, we are laughing and connecting better than we have in years, the next he is barely speaking to me again.  But he is speaking to me more frequently than before, the periods of ignoring are shorter and he seems to be trying to listen in a way he never has before.

We often have big blow out fights where I fight to be heard over the voices in his own head that are constantly battling with him.  He says he will listen, I know he won't.  But this time, something is different.  He told me to stop waiting to tell him I am angry or hurt.  I asked him how I was supposed to do that.  I told him I don't feel safe telling him things.  I know that if I said, "That was mean.  Don't speak to me that way." He will explode on me.  But if I wait, I get less of a blast, though still an angry demeanor.

I told him I can't win.  In the moment, he will escalate and he is doing that so quickly now that I can't control it anymore.  It's not safe for me to tell him things.  Sometimes I have panic attacks because I know I need to tell him something that will cause him to erupt.  I debate how important it is that he know.  I put it off.  But I know that I am trying to have a successful marriage, not just mitigate his symptoms and a successful marriage is honest.  It means that I knowingly incur his wrath so that I can continue to try to have communication and openness.

But it means I don't always feel safe talking to him.

For the first time, he saw it from my side.  He saw the lose/lose situation I am in.  He will get angry in the moment and possibly hurt me or he will get less angry after, but then not speak to me for weeks.  He will get angry I didn't tell him something or angry that I did.  And now that he sees that I don't feel safe and that I am afraid to talk to him, he is taking time to pause before speaking to me.

He is stopping and assessing his own reaction.

This has been a big step forward, but it has also meant that our rollercoaster ride has sped up.  Instead of weeks of not speaking to me, it's a day or a few days, but that means that we go through that ride so much more often than before which is a heck of a lot to cope with.

It means that I've logged into my blog a million times but have never written anything because I'm not sure what to say. I just sit here, staring at the screen, not able to put into words what I am feeling.  Am I happy? Sad? Unnerved? Nervous? Unsure? Scared? All of the above? It's hard to say.

The Power Of Laughter

Today we laughed.  Really laughed.  Not a forced laugh, not a hollow, unfeeling laugh, but a laugh.  It was a laugh that filled our eyes with tears and caused us to lose our breath.  It was a laugh that was so contagious that neither of us could stop; each time we tried, it would fill our lungs again.

I can't remember the last time we laughed like that.  It's been so long since our laughter felt honest.  And it was so needed.  Just that one instance lighted the weight of the air in our house.  It caused a little bit of the stagnant anxiety and stress to dissappate.

I didn't know a laugh could do that.  It was like we had been hold a secret amount of air in our lungs and when it was finally released the force of it cleared the air and we could breath again.  We could breath after having not realized that we were unable to.  I think we all take laughing for granted.  It's not often you go so long without it in life in general.

I don't think anyone realizes the power of laughter until it's gone.  We shuffled through our days not sure why the burden never seemed to lift.  It wasn't even until just a few months ago that I even realized that we don't laugh anymore.  And it wasn't until we laughed today that I realized what a lack of laughter can do to your life, the seriousness that takes over is so subtle.  And sudden you no longer laugh.  And suddenly the air feels thick and sticky.  Suddenly every mundane task of your day seems to take twice the effort, as if the exhaustion from folding laundry might cause you to collapse.  And the longer it goes on, the harder it is to find the strength to pull that hidden air from deep within your lungs to let out the sound that will be loud enough to sooth your household.

Today we laughed.  We laughed for the first time that I can remember in over a year.  We laughed until our cheeks ached and our bodies were tired from the physical effort.  We laughed without care, without thought, without any hidden malice.  We just laughed.  And suddenly, the world seems a little bit easier to take in.

Heartbreak

I went to bed hoping the hurt would be a little less, but broken hearts don’t heal that quickly.  That is something my husband doesn’t understand.  He doesn’t understand why I can’t just sleep it off and feel better in the morning. 

He doesn’t understand this because I do not break his heart.  Each day, I get up more determined than the last to love him.  Each day, I support him and care for him and give him everything I have so that he will not feel unloved.  And each day he takes it for granted.

So, he breaks my heart.  He tells me my dreams are stupid.  He tells me I am not allow to pursue anything that makes me happy because he is not happy.  He tells me that I can never be who I want to be or what I want to be because he said so. 

Sometimes it's just a little heartache.  I can cope with heartache.  I can wake up determined the next day with heartache.  But broken is another thing completely.  When he breaks my heart, the wound is hard to come back from.  

A Love Most Don't Understand

I love my husband in a way that most will never understand.  It's not to say that they will never know love, or even true love, but most people believe that you love someone who loves you back.  You wake up one day and meet someone who is perfect to you.  You laugh, you fall in love and you never look back.  But I love my husband in a way that most will never understand, because he can't love me back.

I do not wake up everyday in the arms of someone who loves me.  I do not get to look back at my marriage and laugh at the good times and think of how they outweigh the bad.  Our good times were so short.  We had so little time for me to have those days.  And now I live for moments that would seem fleeting to outsiders.  I live for days when he talks to me voluntarily.  I live for the moments when he laughs an honest to goodness laugh that isn't forced or fake or hollow.

Most will never understand what it is like to love someone who doesn't love you back.  Not because they have never felt unrequited love, but because they have never married someone who loved them once, but came home one day and no longer did. We did not fall out of love, I did not love a man who didn't know I existed, but rather, the person who used to love me is bound in chains, suffocated by himself.

And he is angry at me.  He is angry that I don't leave.  He is angry that I love him anyway.  He is angry that I am sometimes weak, but more angry that most of the time I am strong.  He is angry that I love him and tries everyday to get me to stop.

Most will never know the pain of loving someone, who used to love you, who wants to love you again, but who can't.  Most do not understand why I keep loving him.  Most do not understand why I would hang onto the love I have for someone who hasn't loved me back in years.  But instead of my love being reciprocated, I have a love that is hopeful and faithful.  I do not love because he loves me too, I love because he doesn't.

I love him because he deserve to be loved and he needs to wake up everyday, angry or not and know that someone does.  And he will continue to punish me for loving him and I will continue to love him anyway because he needs to learn that not loving himself will not stop me.

The Nothing

There are a lot of things that are hard in this world.  There are a lot of emotions that will topple you, there are feelings that will bury you and there are situations that you feel you will never survive.  I have been through a lot as a spouse with a husband who has PTSD.  Nothing compared to him, of course, but enough.

I have been belittled, made to feel unimportant, made to feel stupid.  I have been told that I don't matter, I have been called horrible names for asking simple questions.  I have felt threatened, I have felt scared, I have felt overwhelmed and unsure of what to do or where to turn next.

What has been the worst is the indifference.  The times where there is nothing.

It might not seem like much, someone being indifferent to you.  You go about your day, never bothered, never criticized, never harassed.  But it means you go about your day with nothing at all.

There are not many rewards things in this life.  A laugh that sounds almost like it used to.  A smile where he never did before.  A glimmer of who he once was, who you once were, what your life once was.  It is the little things, the little triumphs that you have to cherish, because not much else will get you through on the days when you have nothing at all.  On the days, the weeks, the months that he is indifferent to you.

I speak to him and he walks away.  I touch him and he recoils.  I look at him with no eye contact.  I lie next to him in bed, every night and we never say a word.  He no longer kisses me goodnight.  He doesn't even tell me if he is going to sleep or going to stay up on his laptop.  Nothing.

He can be like this for weeks, sometimes months.  And there are days when the silence and the loneliness is too much to bear and I would love to have him screaming at me.  There are times when I would rather feel his anger, than nothing.  At least when he is angry he is noticing me. At least it is something.

It's hard to live a life where you don't feel cared for, loved or respected.  And it's hard to live a life where the screaming and the pain is better than the nothing that will follow.

I can feel my heart becoming defeated.  I can feel myself only going through the motions because I am becoming numb.  Because numb is better than the nothing and I never know how long the nothing is going to last.

Is Caregiver A Four Letter Word?

Whenever there is a group of people that someone is trying to reach, they are going to created a term for it.  The term catches on and the next thing you know, the group has a label.  This is not such a bad thing.  I have seen that everyone in the blogging community refers to military spouses as Milspouses.   And PTSD spouse are called Caregivers.

But is Caregivers the best term?

I have used it.  I call myself a Caregiver, as do most of the spouses of those with PTSD that I know or am in contact with.  What is interesting is that my husband hates the term.  He turns a funny shade of red every time I make a reference to being a Caregiver or to the Caregiver community.  He hates the idea that we have coined the phrase and use it to describe our situation.

I can't say that I blame him.  The more and more I use it or think about it, it's kind of an offensive term to my husband and with a valid reason.  The term caregiver denotes a person caring for an invalid.  Someone that can't can't care for themselves and is incapable of doing anything on their own.  If I think about it from a subjective, outside of the community way, I hear the term and think of someone who does hospice care for the elderly or works in some sort of home for those who can't care for themselves.

My husband is a capable man.  He works a job and pays the bills (sort of).  He needs help and support from me, that is true.  He needs me to help him during his cycles and his mood swings.  He needs help talking him down from escalations, but what he is not is an invalid.  He is not someone who can't do anything for himself.

So, looking at it from that standpoint, is "caregiver" really the best name for what I do?  No.

It's tough to find a term or word that encompasses an entire group.  But maybe our community needs to rethink Caregiver.  My husband finds it offensive and I'm sure he's not alone in that feeling and I understand why he feels that way.  Maybe we should consider the term a four letter word and look for something that is a bit more sensitive.

Forever Hopeful

The kind of wonderful thing about having a blog, something that I didn't think about all those months ago when I started this, is that acts as a journal.  This blog was meant to be the chronicle of our journey.  Nothing special, nothing amazing, just life as I see it.

So many have reached out to me and told me of their own struggles and home lives and how they can relate to what I say.  It was not something I foresaw happening, but feel so grateful that it has.  It's amazing to know I'm not alone, but even more so, I feel flattered and blessed that what I am feeling and saying might be helping someone.  I have no amazing pieces of advice most of the time, but to be understood is a pretty powerful thing.

On thing that I know is horribly misunderstood is the concept of why we all stay in these situations with all that happens.  My husband is horribly verbally abuse to me.  He can be cold, distant, indifferent and even cruel when he wants to be.  And yet, here I am.

I can't speak for others.  We all have reason for staying.  But I know that I am hopeful.  I hurt.  My heart aches from the pain that I can't figure out how to help him and fix this.  My pride stings when he picks on me.  When someone you love is the bully, it means that their words hurt twice as much because they can pinpoint your insecurities.  It is not an easy life.  I can't remember the last time my husband touched me out of kindness and fondness for me.

But here I am. I am here because I look into the face of a stranger and see someone that I know loved me once.  I see him laugh and there is a little twinge of who he once was in the tone of it.  I am here because no matter how painful it is to be here, I wake up each day hopeful for those little tiny moments.  We make progress, then we regress, then we progress again.  I live for the days we move forward, no matter how many days we move back.  I live for the moments that I can say that our love for each other is what saw us through, no matter how many years from now it may be.

I stay.  I stay because he deserves a wife who will.  For all that he has lost, he deservers something constant.  It is not easy.  It is lonely and painful and a life filled with so much sadness that some times the weight of it causes me to lose my breath.  But for all that I am going through, all of my loss, pain and sadness, he has given up so much more.  And he is in there... Somewhere.  He may never be who he once was, but he is in there, and I will hold his hand and love him no matter what.  Because when someone can't love themselves, they need someone who loves them more than the entirety of forever to make up for it.

Who Takes Care of the Caregivers?

Maybe you have noticed the absence here.  Maybe not.  I know that I'm not always consistent in posting here.  But we had a rough month last month.  It was a month full of apathy and disinterest.  This rough month that started in March is continuing into April and culminated tonight in a question that I often wonder, but always feel a bit guilty for thinking about.  Who takes care of us?

While there is more information out there about PTSD than ever before, there is surprisingly little about who takes care of the caregiver.  Everything I've read, every event I've been referred to, group discussion, symposium, weekend away, it's all geared towards helping me help him.  It's all about how to help him, make his life easier, support him and understand him.

So, I ask you this, have you ever heard of secondary PTSD?  Probably not.  It's a pretty knew phenomenon we are seeing in the spouses and family members of those who live with PTSD in their homes.  I think of it as whiplash.  I fly backwards in response to his outbursts and escalations and when I whip back forward, BAM a PTSD reaction to a situation full of heightened stress, fear and emotion.  And I completely understand why it's happening and can see where this will soon because the new normal for all of us.  No one is taking care of us, while we are taking care of them.

Tonight, I needed my husband and he told me it was my fault that he didn't follow through.  He told me that I knew I needed him and should have found someone else.  I was very sick and needed his help and he said his failure to support me and help me by picking up some medications I needed was my fault because, "you knew you were sick."

So, while my life is a battlefield full of land mines that are so expertly hidden that I have yet to learn to navigate the field.  While my world is so full of fear and anxiety and stress that I can't sleep...  While I am carrying this terrible burden and secret of our life, behind the passing glances of those who might peak into our windows... Who is going to be there when I am the one in need?

When I am sick, hurt, overwhelmed, emotionally falling apart or just not able to cope, who is going to be the person I can turn to.  Who is going to get my medications and not tell me it's my fault they didn't bring them to me?  Who is going to drive me to a doctors appointment if I am injured?  Who is going to put my needs ahead of their own?

Who is responsible for taking care of the caregivers?