Thursday, November 28, 2013

Don't Jinx It

It's been a month since I posted.  It's been a very uninteresting month and that is why I have stayed away.

No major battles, just the normal little ones going on here.  I have been reluctant to write about it, the peace that is, because I'm still waiting for the other shoe to drop.  Which sounds terrible now that I've typed it out.  But it always seems that when calm hits the house, the moment I get settled in it, the war breaks out again.

I don't know what is causing his change this month.  He admitted that he's missed appointments with his counselor because of scheduling issues.  He has admitted to not even working on the things he promised he would.  But for some reason, he is more even keeled than normal.

It's a welcome change this Thanksgiving.  Holidays are so tough for us both and he gets overwhelmed with it all very easily it seems.  Though, we aren't spending the holidays with family this year so I hope this peace can last through the new year.  Or close to it anyway.

We are not necessarily laughing more, but we are able to spend time together and be silent and calm.  He is being great about expressing himself BEFORE he is too escalated to do anything and he is respecting my boundaries of not being willing to talk to him when he is like that.  So over all, the baby steps we are making are good.

I am still waiting for the shoe to drop.  I am still cautious about letting myself think this change might be a continuing thing VS a fluke.  Even as I'm typing, I'm nervous about hitting publish on the chance that it's a jinx I'm bringing on myself.  And maybe it will be. 

But for now, we will enjoy our Thanksgiving quietly.  No big dinner, no trip to see family.  Just us.  And hopefully the calm start to the holidays will bring a wave of calm throughout them.


Happy Thanksgiving to everyone and please remember to think of those who are not able to be with their family.



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Friday, October 25, 2013

Dear Amnesty International: Images Can Trigger PTSD

Someone brought a new-ish ad campaign to my attention.  This series of ads were put up by Amnesty International, luckily for me, they appear to only be in Switzerland, where the group is based.

I will not share the pictures for the simple fact of why I am upset about the campaign:

These photos were done in a wonderful way to be realistic.  Which means they are violent and graphic. And many of them depict things that are meant to show war crimes happening around the world. And while I understand the desire to create an intense emotional response from people to further your cause, I have to wonder why no one seems to be concerned about the well being of those who might see them.

Luckily, they don't seem to be anywhere else in the world, for instance, in the US.  If they were, there would be a significantly larger outcry I'm sure.  I saw them being shared on FB, and when my friend attempted to voice her concerned about people like my husband, who suffer from PTSD, and how these images are sure to trigger Vets due to the violence, she was met with a few who backed her.  Sadly, more people were adamant that the images were necessary and that not using such violence to sell the point was the problem with the world.  These people accused her of being apathetic and said that she needed to "wake up."

It was sad to me.  She was simply trying to point out that those images could cause harm.  And while I'm sure there are many who supported her (I am one), it is a shame to me that people seemed so wholly unconcerned with the well being of those who might see the ads and their families who will be the ones who pick up the pieces when an unsuspecting husband or brother goes to catch the bus one morning and is triggered by the violent image of a POW camp, a child who appears to be being carried to safety after a massive trauma, and someone else being beaten with a bag over their head by a guard.

These are images that can and will easily trigger PTSD issues.  And with Facebook's recent decision to change it's policy on violent and graphic images, it is something I am seeing happen, and hearing is happening, more and more.

So many groups are out there to remind people on September 11th, on Memorial Day, and many other days of rememberance that PTSD sufferers are trigger by images so please think about what you are posting.  But what about on a random Wednesday?  Who is there to remind the public that today, a day that has no special meaning, their photo in support of Amnesty Internationals shock campaign triggered someone's husband and she is now talking him down?

And when a voice of reason, simply asking, "isn't there a better way to make a point?" is met with harsh criticism, I am disheartened.

I didn't show the pictures to my husband, but I told him about it.  I told him about the campaign and how upset I was for the Vets and children who might be affected.  For the first time in a long time, I saw him get sad.  He grew quiet.  Then he looked at me and said:

"Those aren't images for small children.  Children should never have to see that.  There are people in this world, who do what they do, who go through what they go through, so that the children and people of this nation DON'T HAVE TO SEE THAT.  We do what we do, to protect our nation from the horrors we see.  We see them and can't unsee them, so that our nation can live in peace, never burdened with that knowledge."

He talked to me about how horrible he thinks it is that no one seems to think that it's important to protect children from images like that.  He discussed the issues related to children who suffer from PTSD due to the war torn nations they grew up in.  He asked me what would happen to them when they grow up and are managing the best they can, only to have to sit next to a picture of the most horrific part of their life just to catch the bus to work.

It broke my heart to have his ask me.  It made me angry to think that he sees what he does that way.  He sees his job as a means of protecting our nation and specifically our nations children from images like that.  He sees what he has been through and what he lives with as an acceptable sacrifice.

I get what Amnesty International is trying to do.  I understand that it is easy for people to go about their life and not think about the tragedies that are happening all around the world.  We wake up, drink our coffee and go to work never thinking much about some of the places in this world where people never feel safe.  But people who live with someone who has PTSD don't have that problem.

We know what the aftermath looks like.  We know what the fight looks like.  We live it everyday.

And I don't think it's too much to ask to simply think before you post something.  I don't think it was unreasonable for my friend, who knows what I live everyday, to speak up on behalf of those who might be deeply affected by these images.



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Monday, October 14, 2013

Sometimes, Silence is Good

Things have been quiet around here.  They are quiet because things hit a head last weekend.

I don't know what caused it.  I don't know why things escalated.  We had been doing so very well lately.  But a friend of my husband was planning on stopping by when he ended up in town.  It wasn't a huge deal and this friend is a fellow Marine with PTSD, so I know that even though they were friends anyway, it's good for both of them to meet up when they can.  Though he'd never admit it, it gives me husband comfort to know that this friend also has PTSD.  He is someone my husband admires and respects so I think it's good for him to feel that it's ok that he also suffers from it.

But this friend was supposed to come and go.  That turned into ordering pizza when I expressly told my husband we couldn't feed them and his friend brought a friend and then my husband invited more people over and the next thing I know I have a group of guys eating us out of house and home while watching movies and playing video games.

I think it's fair that I was upset.  My husband and I had discussed it all and that is not what was supposed to happen.  I was frustrated that my husband put me on the spot again.  He likes to wait until everyone is listening to ask if it's ok for things to happen.  When he does this, he forces me into an unwinnable situation.  I'm either the bitch wife who is treating him like I"m his mother and telling him it's time for his friends to leave, or my day gets ruined while he does whatever he wants.  Because it's easier not to fight with him in front of his friends, I usually give in.  It's a shitty position to put me in.

All of this culminated in me texting him multiple times to say it's time for everyone to leave.  It was midnight and I was ready to have my house back.  He didn't respond so I finally called his cell.

He came upstairs knowing he was looking for a fight.  He came up and asked me what it was I wanted.  I told him, he then asked what difference it made to me if his friends stayed or left.  He came up knowing that I wanted the house back to myself. He knew why I was upset.  But he came up looking for a fight.

This fight turned it suitcases packed.  Which turned into an even bigger fight.  He recently had told me in a fit of anger that he wanted a divorce.  He didn't mean it, but it has meant that suitcases have been in the bedroom for a while now.  They had been in the bedroom for a year to be honest.  We've had suitcases sitting out and ready since he started treatment both knowing that it could end up in divorce if he didn't follow through.

Since that night, the night his friends came to hang out, things have been quiet.  He has retreated to his video games and me to my shows and books.  It seems to be a mutual silence.  We are not refusing to spend time together, but I think we both need the quiet right now.

The quiet, for the first time in a long time, has felt good.  It is not the cold shoulder.  It is restful.  It is recouperating from what has felt like a year that lasted an eternity.

Sometimes, silence is good in this life.


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Thursday, September 19, 2013

Broken Promises

I made a promise eight months ago.  I promised to never say divorce, never threaten, never mention, never imply.  A month ago, I broke that promise.  A month ago, my husband and I hit a point where things just couldn't continue without consequences and I was done.  I was ready to leave.

It is not an easy promise to break, but I am not a terrible person lording divorce over my husbands head.  He broke his promises too.  He broke every single one, every day for eight months.  Every. Single. One.

Eight months ago I left.  I left without knowing if I would come back.  But I did.  My husband left my suitcase in our bedroom so that he could remember what was at stake.  He promised we were in it together.  I was to be included in his treatment.  He was to continue treatment and not quite like he threatened to.  We were going to come up with plans on how to handle his triggers together and we were going to work together to figure out what some of his triggers were.

None of those things happened.

I am not being included in any part of his life.  We continued down the same path of denial, exclusion and indifference.  And I broke.  I am broken.

I feel defeated.  I feel lost.  I feel utterly pained that I can't help if he won't allow me and include me, but he refuses.

Broken promises are not things I take lightly and now I have broken a big one.  A massive one.  And he is angry and holding it against me in everything he does.

We will work through this just like anything else.  He understands that he can't continue his pattern if he wants to stay married.  He understands that just saying, "I'll try" isn't good enough anymore.  And he understands that I am trying to help, but can't if he won't let me.

I would like to be optimistic.  I would like to say this is us moving into a whole new place.  But these are promises I've heard before.  And because I've heard them all before, I want to believe, rather than do.

Broken promises are very damaging.  My broke promise has damaged a lot in just that one act.  His have damaged our life after so many years of them.  And now, I am left wondering if this trail of broken promises we seem to be following will ever end.  Will we ever be in a place to be working together?

Can we move forward and finally be partners?  Sometimes I think we have too many broken promises to be able to.



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Monday, September 16, 2013

The Unexpected Consequence of Blogging

A year ago, I started a blog.  I needed a safe place to talk about my feelings, away from the prying eyes of those we know.  I needed somewhere I could say what was in my heart, let out my hurt, encourage myself to stick with this life and sometimes, just to feel normal.

In the process, I hoped that others might find comfort in knowing they aren't alone, or even just being able to feel normal too.  I hoped that, by writing about PTSD from my own perspective, instead of regurgitating information, I might be able to show people this secret life so many lead.  Our situation is not so uncommon.

It's not uncommon for spouses to be sworn to secrecy.  It's not so uncommon for service members (or others who might have PTSD related to their duty i.e.: Police Offices, Fire fighters etc) to refuse to seek treatment, or to seek treatment in secret and refuse to tell anyone.  My situation is not so uncommon.  I lose myself in the situation, I forget else care, I live with a great big secret.

But, in the process of hoping someone might find comfort in my words, or understanding in my situation, I forgot one important thing... And it's been a life lesson.

Blog posts are always here.  So, while I might forget how hurt I am today, or I might forget how mad, my blog doesn't.  And it means that I get emails someone tweeted something, tagged me in something or generally shared something I wrote and I have to look.  I want to see what resonated with them.

Then I cry.

I cry remembering the pain.
I cry remembering the hope.
I cry realizing I am still in the same place, in a worse place, or that things were ever that bad.

The unexpected consequence of blogging is that your blog never forgets.  And when your blog is painfully personal, and is a place for you to release your feelings and the truth of your life, sometimes, what you need is a short memory.



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Friday, September 13, 2013

What is Secondary PTSD?


Secondary PTSD is when a family member or spouse living with a person with PTSD begins to mirror their symptoms.  It is characterized by similar issues with anger, insomnia, depression, and other common traits of PTSD.  Lately, it seems that the new diagnosis for military spouses is Secondary PTSD.

However there are major differences between Caregiver Fatigue (as it's called) and true Secondary PTSD.  Feeling overwhelmed, frustrated, exhausted and even crying constantly are common with fatigue but do not necessarily denote SPTSD.

One of the biggest differences is issues sleeping.  Spouses often begin having trouble sleeping and experiencing nightmares.  The nightmares are commonly described as being about a traumatic event that involves their service member, but that is not the only nightmare many describe having.

Some researches claim that as many of 40% of spouses have symptoms or signs of Secondary PTSD, but hardly any ever seek treatment.  Other studies suggest that it is being over diagnosed and that nearly half of those currently diagnosed are, in fact, suffering from Caregiver Fatigue instead.  With figures varying in such a large degree it's difficult to say how common or uncommon it is.  But one thing seems apparent to me:  We are seeing it more and there is more and more information available every day.

We are no longer in this fight alone.  The medical profession is beginning to see and understand that their can be tolls on the family that may need to be treated.  So, I still suggest that people be aware that it is out there.  Be aware that living in this situation can have long term damage and watch for it.

Just as we care for our service member, we must care for ourselves.  If you are experiencing Caregiver Fatigue or think you might have the signs of Secondary PTSD, I urge you to talk to someone.  Be sure that you are being supportive and are taking care of you.  We so easily get lost in the world that surrounds our service member, we often forget our own.

If you are having difficulty sleeping, nightmares, are exhausted, depressed, emotionally spent, and feeling like you can't hope and are overwhelmed.  Call someone.

Militaryonesource.com is available and offers free counseling.  Keep in mind that they do require some personal information.

Giveanhour.org offers free counseling to vets and their families.

Heartsofvalor.org if a group for spouses of wounded warriors and offers support groups as well as retreats.




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Wednesday, September 11, 2013

One Day in a Million Days: Sept 11th, 12 years later

There isn't much to say about today that everyone else isn't already saying.

Not a day goes by when I am not reminded, when looking into my husbands eyes, that that one day changed so much more than I ever thought possible.

One day.

One day, in a million days.

One morning, in a million mornings.

Our life has been directly affected by that one day, that one morning, 12 years ago.

I pray for peace for those who are still seeking it.  I pray for healing for our nation, for those who suffered losses, for those still fighting in the war and for those who have lost everything.

I hope that some day, today will not be a painful reminder.  A tear soaked day that I can't help but wish were just another day.  Just another day, in a million days, that didn't have such a tearful pain linked to it.



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Monday, September 9, 2013

Secondary PTSD


Secondary PTSD is todays latest buzz word.  Where a few years ago it was unheard of, today, it's becoming more and more common for spouses and children or other loved ones to develop.

A year ago, I hadn't even heard of it. The next thing I know, I've agreed to go on a radio show to talk about what it is like to live with someone with PTSD from a spouses perspective.  The person who was on the show first was discussing it in part.  I listened and understood.  It made sense to me.  We are fighting a different battle at home, but a battle none the less.

The stress of living in this environment is one I have trouble explaining.  I often feel I am fighting a losing battle.  I am in a no win situation.  I am on egg shells, I am tiptoeing around not sure what will set him off today.

This evening, my husband and I began to fight.  It's a fight we've been having off and on for a few weeks.  I talk and he doesn't even acknowledge I spoke, he walks away like I'm not there.  He is having memory issues, which is common with PTSD.  But he won't admit it.  He won't admit that he forgets in mid movement what he was doing to begin with.  So we fight.

We fight because he changes the rules right when I think I have them figured out.  Because he forgot he changed the rules and is mad I'm doing something different.  Or simply because he is angry today.  He bullies, he belittles, he tells me he understands what I'm saying while simultaneously glaring and showing me that he is mad I dared speak up.

When you live in a house filled with land mines, it's no wonder spouse and children are developing a form of PTSD related to living with a service member.

Many of the symptoms are the same as PTSD.  And I can't help but wonder if, after all these years living in this environment, if I don't have some of the symptoms.  I've been noticing little things.  But I can only guess.  And even if I did, what am I going to do?

Sadly, the environment will be like this for a lot longer still.  And me talking to someone has always been a source of my husbands wrath.  It seems hipocritical of me to tell you to watch for signs in yourself and your family, when I myself and not following through.

But I will say it anyway.  Watch your family.  Watch for signs that they (or you) might be being effected by your situation.  And seek help if you notice anything.  Anything at all.

Secondary PTSD is becoming more and more common.  Don't be surprised if you start seeing more and more groups talking about it, or even advocates urging you to get help.  And really, I'm not surprised considering what many of us are living with.

(I am in the process of writing another bit about Secondary PTSD and what to look for)


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Wednesday, September 4, 2013

Flattered

I was recently contacted by a group wanting me to write a post for them and their site.  They told me they were drawn to me by the honesty in my writing about this crazy, messed up life I lead.

It's not the first time someone has requested to work with me for that reason and I am beyond flattered.

This blog is just a place for me to anonymously dump my word vomit.  It's a place for me to express my feelings without it causing a fight, or having to treat lightly.  It has turned into a sanctuary of sorts when things get really crazy and a place I hide from when I feel ashamed of what I'm feeling.  But I always come back and share those feelings anyway.

I don't want anyone, caregiver, spouse, significant other, parent, friend or other to ever feel they are on their journey alone.  I spent years wondering what was wrong with me to have such a messed up marriage.  Then I spent ages pretending I didn't see what was going on.  Then I allowed my husband to act like nothing was wrong for longer than I should have.  And I felt utterly alone every step of the way. I had no one to talk to, I had no one to understand and I am still not allowed to tell people.

I never want anyone to feel alone.  And if just one person reads this blog one time and says, "I feel that way too."  And can do so while feeling relived that someone else not only feels that way, but understands completely, then it will all be worth pouring my heart out here.

Sometimes I think I share too much.  Other times, not enough.  But over all, I pledged to be honest with myself when I started this blog.  And I'm flattered to see that that honestly is drawing people in and making them want to work with me.  And I truly hope that being SO honest might help someone out there who just needs someone to understand the secret life they are living with their significant other behind closed doors.



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Monday, September 2, 2013

Would We Still be Married if He Didn't Have PTSD?


I truly believe that we all have times in our life where we wonder if things were different, if our marriages would still be standing.  I know that it’s not popular to discuss troubled marriages, or even the times when we look at our partner and think, “What the heck? How did we end up here?”  Living with someone who has PTSD means that you probably ask yourself that question more than most. It’s the nature of what we cope with. 

It’s a constant state of wondering.  If things were different would we still be married? There is never an easy answer.  And sometimes, the easy answer is more painful to admit than the reality.

Yes, if my husband had never come home with PTSD, we would still be married.  We’d be laughing and happy and content.  But he didn’t come home like that and what I have instead is a man who sometimes makes me question why I stay.  Everyone has different reasons.  We all have little things that make us wake up everyday and live this life.  And sometimes the reasons we stay are just as shameful as the reasons we want to, or in some cases have to leave.

I stay because my heart has to believe we can get through this.  Through the silent tears and the calm control over every fight I have to take with myself, I have to believe that we will come out the other side.  Maybe not whole, maybe not the same, but we can do it.

Others stay because they feel honor bound to.  I’ll admit that I do too.  I feel a sense of duty to my husband.  It’s not shameful in my opinion.  Wanting to honor your marriage vows and honor a man who gave up everything for an honorable reason is never shameful.  But it often feels like is it.  It feels like my dirty little secret that I feel like I owe it to him.  But he deserves a woman who will be here day in and day out.  Even when things are the way they are currently.

I have thought about leaving. I have stayed in hotels. I have even met with a divorce lawyer.  But I stay.

Through the months of yelling and months of silence I stay.  After so many years, I am beginning to feel defeated.  I’m exhausted and just worn down.  But I stay.  But when I’m so tired from holding our world together alone, those little thoughts trickle in.  Would we still be together?  What will be our breaking point?  Who would we be?  Who are we now? When does it end? 




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Thursday, August 29, 2013

He Was Broken by War, There is No Shame in That

Somewhere along the line, the collective psyche of the US decided that our men must be able to be warriors on the battlefield, full of heroics and loyalty to the nation and nothing else, but normal everyday people when they touch back onto US soil.  The transition is supposed to be seamless with nothing from either life bleeding through to the other.

Coming home and being unable to switch back to a tender husband and loving father after the horrors of war is unimaginable.  And shameful.

But why?

We as a nation, as a group, as a whole, have set an unlivable standard.

How is it right to expect our military to leave the normal human morals behind and then be shocked that they are unable to reconnect with their more "human" side when they return?  Can you say that you have been through hell, any kind of hell, and come out the other side untouched and unchanged?  I can't.

Just living with the aftermath of multiple deployments and years as a nation at war has changed me.  So why does it seem to be thought of as shameful to admit that war changes you?

It is not to say that everyone comes home with PTSD.  People do not have to lose their humanity.  But to expect the masses to fight a 12 year war and remain unchanged is an extreme form of naivete that I can't understand.

I don't know what my husband saw.  I don't know what he did.  And I don't need to know to know that fighting a war but retaining your sense of self is not always easy.  He was trained to be a Marine.  A fighting machine.  He has said that those who join the Marines join to fight.  They wait for war, they often welcome it.  Maybe that's true.  But if it is, if they truly are trained to be the best fighter of any war, then to expect them to transition back to a life in a civilian world and not see threats everywhere makes no sense.  They are trained to do exactly that, see the threat, neutralize it and move on.

My husband has admitted that in times of great stress, when we are fighting and he shut downs, he sees me not as a wife, but as a threat to be neutralized.  And why shouldn't he?  That is what he was trained to do.

We are living in a world of unlivable expectations.  It is unreasonable to say that our service members must be capable of taking a life, an act that is thought of to be immoral and inhuman to do, but then expect them to retain both extremes in harmony.  To say one must be a war fighting machine, but also a gentle and loving father, husband, neighbor and co-worker, is to say that the dueling conflict within must be resolved without guidance.

It is not shameful to come home struggling to leave the war behind.  It is what we asked of them.  Fight a war.  My husband did just that.  And now that war lives with him everyday.  "Broken by battle."  The dueling conflicts of who he is supposed to be cannot simply resolve because he stepped off a plane and was home again.  Some make the transition easier than others, but there is nothing wrong with the struggle.  It is we, those who have placed that expectation on them that should be considering our actions.

Instead of understand, we surround them with stereotypes and expectations that are impossible to meet. My husband did what he was trained to do and it was inevitable that, at some point, the switch would not flicker on and off so easily.




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Monday, August 26, 2013

Overwhelming Sound

Things become so overwhelming that I find myself sitting alone in the house when my husband is gone and just relishing the silence. There is always so much noise.  The TV is always on, the click of his keyboard always there in the background.  The sounds of kids outside enjoying their summer.  A constant onslaught of noise and my life feels noisy enough as it is.

It's not that there is constant shouting.  We are in another patch of him ignoring me that is going on three weeks right now.  It's that my life FEELS noisy.  It's like the constant control I have to maintain, the constant inner dialog that helps me keep my sanity or simply make it through my day makes life feel like there is never ending sound coming at me in a constant barrage.  Me against the world.

So, when he is gone and I am alone, I sit in the quiet.  I allow myself to enjoy the momentary silence that will inevitably be replaced as soon as he is home.  The sound of his boots on the ground, stomping up the stairs.  The sound of his keyboard as he chooses to interact with his friends online instead of speaking directly to me and the sound of my own thoughts reminding me to steady my voice, tread lightly, speak softly, maintain control... My constant mantras to allow me to successfully navigate our day without a fight, or at least, without a massive blowout.

I find that I can even hear the grinding of my teeth through it all.  I can hear my muscles tense each day that comes closer to his return from duty, or hour from his return from work.  I can hear him coming even when he is no where around.  And the sound can overwhelm my senses.


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Wednesday, August 21, 2013

Lessons Learned by an Unwavering Caregiver

A pretty amazing story was sent to me.  And while I understand that this is a PTSD blog and this story centers around cancer, I want you to read it.  Caregiver is a term that many of us have grown used to using and seeing in relation to someone with PTSD, but there are so many others out there who have earned the title of caregiver.  And much of what we do is the same.
Please welcome my guest poster and read this wonderful post about what being a caregiver to his wife, taught this amazing man.
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The events on November 21, 2005 changed the lives of my wife, Heather, and I forever. On that day, she was diagnosed with malignant pleural mesothelioma, a form of aggressive cancer. During the course of events on that very same day, I came to realize that I had become a caregiver for a loved one diagnosed with a life-threatening disease. With little experience in caring for others, I felt a strong sense of helplessness. A diagnosis of cancer was the last thing we had expected after celebrating the birth of life a few months earlier with the arrival of our first and only daughter Lily. Although we had looked forward to finally spending a holiday as a family at our Lily’s first Christmas, our plans rapidly changed as we faced one crisis after another.
As our physician described the affects of mesothelioma in his office on that day, it was clear that my role as caregiver had already begun. The doctor had recommended three options for Heather’s treatment that included the local university hospital, a premier regional hospital that did not have a current treatment protocol for mesothelioma, and a physician who specialized in treating this disease in Boston. As always, I looked to my wife for her input on the decision to be made, however; her face remained fixed in a fear and shock that would not permit her to speak. I grabbed her hand in mine and quickly made the decision that Boston was the best option.

The next two months were overwhelming with continuous doctor appointments, trips to Boston and medical procedures. Heather could no longer work her full time job, and I could only work part time because I had to take time to care of her and our baby. The process of paying medical bills, carrying for my family and working when I could arrange care for my baby quickly took a toll on my state of mental health. Although I always expressed a strong resolve for Heather’s recovery, at times I secretly feared that I would lose my precious wife, become bankrupt and be left alone to care for an infant child. Overwhelmed by the prospect of grief and loss, I faced the anxiety, emotional pain and exhaustion in silence.
My wife and I will never forget the compassionate care from friends, family and people we did not even know. Friends and family took the time to help care for Lily, stay with Heather at home while I worked and strangers even offered financial assistance. How can you thank those who help you in such a time of need? The most important lesson to learn about being a caregiver is to know you need help and allow people to assist you. No matter how big or small an offer of help may seem, always accept a helping hand to lessen a list of seemingly endless tasks.  During the worst times, I was so thankful to have someone to talk to, work out my fears and realize that people really do care about me and my family.

For those who provide loving care for their family member struggling with a diagnosis of cancer, it may be the most challenging time of your life. A life-threatening disease produces fear of the loss of a loved one; anxiety about providing enough money and the endless hours of performing tasks that never seem to have an end in sight. During this time, ensure you have someone to talk to about your fears and allow yourself to resolve your hope for the future.

Heather and I were one of the lucky families. After she endured surgery, radiation treatments and chemotherapy, Heather beat mesothelioma and went into remission. In addition, she remains cancer free and healthy to this day, over seven years later. I have learned from our fight with cancer that our time is precious and anything is possible with perseverance and devotion. With my renewed faith in hope and endurance, I returned to school fulltime to pursue a degree in information management.

The challenges of being a caregiver for my wife and daughter had given me the experience to juggle commitments, endure pressure and handle stress. Returning to college two years after her cancer diagnosis was an endeavor that I embraced as fully as caring for my family. I not only graduated with honors but I was chosen to give the graduation speech for my class. The irony of my speech was that I would have never thought that five years ago I would be standing behind the podium with a college degree and a beautiful family. Even our most difficult experiences can strengthen our resolve and restore our dreams. My family taught me the value of commitment, love and determination.
Cameron Von St. James
Mesothelioma Cancer Alliance
http://www.mesothelioma.com/blog/authors/cameron/


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Monday, July 22, 2013

PTSD Is A Selfish Disease

I understand the dislike of those that ever speak of PTSD in a negative view.  This day in age, with all of the misinformation and misunderstandings surrounding PTSD, everyone wants to be clear.  It means that it's painted in a very sympathetic light.

I'm not here to say that it's wrong.  I believe that people with PTSD need more understanding.  But one thing that I never hear people talk about is that PTSD is a selfish disorder.

Today my husband and I had another blowout.  It's common.  He's volatile and I'm in constant pain.  My heart is in a constant state of broken.  But our fights never go anywhere.  They can't.  My husband is unable to focus on anything I am saying.  Instead, he is angry that I have feelings, that they are hurt or that I have an opinion about anything.  I am not allowed.

The problem with moving forward is that PTSD is self centered.  In my husbands mind and world, no one is allowed to have pain but him.  And anything I might be feeling is wrong and probably the cause of his own pain.  He is the only one with problems and our whole world and my whole life is expected to revolve around him.

He can spin anything to be my fault and has a knack for turning my feelings into something he can mock and belittle. I can't tell him anything. I never do.  I am often so alone because there is no one I can talk to.

Right now, I will be honest and say we are at a stand still that might never be fixed. He has caused so much daily pain that I have developed apathy and am no longer truly able to be present.  I am not trying anymore which sounds terrible and might make me a horrible person.  But I can't keep going through this.  I tried to explain it to my husband, but all he has done is be angry at me.

Telling someone that you understand by shouting "I understand" at them isn't really understanding.  And all he managed to do was tell me all the things I did that caused this in the most condescending way possible.

People don't talk about that side of it often.  The side that says no one can be in pain but me.  The side that says anyone who is upset with me is wrong.  The side that says none of this bleeds into anyone else's life.

He refuses to see how this affects me.  He refuses to see that only he can be the one to make a decision to fix this.  He refuses to accept that his choices and his PTSD affect my life.




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Thursday, July 18, 2013

The Man Who Isn't Coming Back: A Spouses Grief Over PTSD

I often feel like people don't understand the grieving process. It sounds strange because my husband came home but at the same time I am grieving the loss of somebody who used to be here who isn't anymore.  I look at my husband every day and I see the man I married, but his actions show me that that man isn't here anymore.

It feels like I should be able to capture the man he used to be. I look around my house every day and see bits and pieces that, together, create that man. Sometimes it feels like I should be able to lay in bed and smell his scent on his pillow and bring him back because it feels like he might still be there somewhere. Sometimes when he is gone, sometimes when he is in the field or on a training mission, I lay in bed breathing in his scent and try to will him to be here, to come back to me.

I watch his familiar habits, the ones he still has, and collect them in my thoughts as if the whole of their motions can bring him back. His stray bits of paper, his pile of cammies in the garage that need to be washed, the visual bits and pieces of him, the bits and pieces that did not get lost.

There are familiar patterns about his day, that almost make it seem like he is here. I know that he is not yet. He's not yet home. But the collection of his habits, his little bits and pieces of the man he used to be are probably the most painful part of my day. Because he is likely not coming home. I love the man I have now with all of my heart, but I am grieving the loss of the man that I married. The man who isn't coming back.



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Friday, June 21, 2013

A Standstill

I'm sad lately.  I'm in my room all the time.  I'm not sleeping the day away or even lacking productivity in my day, I just seem to want to be in my room.  It's safe.  It's comfortable.  For whatever reason, the rest of my house doesn't feel that way anymore.

I know they say not to compare yourself to others.  But we all know, even with our best efforts, it's hard not to sometimes.  In the time since I've started this blog I've found a few PTSD spouse forums and support groups.  And while I often feel comforted to know I'm not alone, I'm also painfully aware that we are not making progress.

We don't fight that much anymore.  Sitting here, right now, I can't even actually remember our last fight.  But that's because it's hard to fight when you don't talk.  I speak to my husband everyday.  I tell him what I cleaned.  I ask him to take the garbage out.  He tells me about his busy day at work.  And then he goes downstairs and watches TV and plays video games and I sit in our room watching TV and reading.

I know I have often spoken of the pain this life has.  It's painful to see him in pain, it's painful to have him always yelling and angry and telling me that I'm terrible.  But now we have nothing.  I never thought I would miss the pain.  I guess it's really just a different sort of pain now.  But it's almost like we both hit a point of not being able to cope with the inability to find a medium ground, so we both retreated to our corners.  It was some sort of unspoken agreement.

I fear this means our marriage is over.  I hate to say that.  I'm not leaving him.  He's not telling me he wants to leave.  But what kind of marriage do we have right now?  When we fought I was at least registering on his mental radar.  It wasn't an easy way to have a relationship, but what we have now is absent of that kind of burning pain because it's absent of any form of meaningful connection.

I see the people talking about the bad stuff, but also talking about the progress their spouse is making.  They talk about their life and the steps they are making that moves them forward, no matter how slowly.  And I see that we are not doing that.  We may not be living that constant battle of me against his PTSD, but we are not moving forward either.  He might be healing, but he is doing it without including me.  And I'm not any better because at some point I just stopped trying to be included.  I don't know when or why or how, but I see now that for weeks I have just not tried.

What kind of person does that make me?  What kind of wife?

I haven't given up on him.  Maybe I just hit a point where mentally I had to withdraw for a while.  I don't know.  But I'm sad and keeping to the only place in my life that feels even remotely comfortable or safe.


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Wednesday, June 19, 2013

PTSD Awareness Month

I don't know why, but I am still so surprised by the misconceptions about PTSD, even within the military community.  I'm always so surprised when people reach out to me and want to talk to me about PTSD and then I discover how much they don't understand.

I suppose it's easy to misunderstand.

There is the media portrayal of what PTSD is in the movies and on TV.  A bunch of drug users and alcoholics beating their wives.  There's what the military community views it as, which is most often as a weakness that makes you less than your counterparts and then there is what it really is.  And even what it really is so varied and so vastly different from one person to the next.

My husband doesn't "flashback," he disconnects.  It's not the same thing really.  He is no longer present in the moment, but isn't acting out some scenario that is only playing in his head either.  And he is mean, and a bully, but he doesn't hit me and never has.  And he drinks more than he used to, but it by no means an alcoholic.

But I know those who have spouses who do have flashbacks and violent outbursts and then there are those who suffer memory lapses, or memory loss.  There are those who are sensitive to sound, where my husband has a hard time in crowds because of the people VS the noise.  There are about a million different combinations of symptoms that can manifest.

But what my husband is not is weak.  He might be the strongest man I know.  And what he is not is broken.  He has a fracture in his mind, that is true, but it doesn't make him incapable.  And our life is not perfect.  In fact, I know I have days where I feel like we are living in a private hell.  But we are doing the best we can.

June is PTSD awareness month and I encourage you to think long and hard about what you know about PTSD and whether or not you have actually learned it as fact or if it's what you saw on TV or at the movies.  Even the news sensationalizes what is a very real, very hard life for service members and their families.  Be educated.

Do not ask service members if they have killed someone.
Do not tell them they deserve whatever comes to them.
Do not assume every military person has PTSD.
Do not assume anything about the ones that do.
Do not tell them they are just fine or over reacting.
Do not tell them or their families that they just have to try harder.

An average of 22 service members commit suicide every day in this country.  Many of them have never seen combat.  But all of their lives should be mourned, and if any part of understanding PTSD can help, I hope that our nation can work together to foster a better community of support.  And I hope that people will choose to get educated.

I have a list of resources on my site, there are more out there.  Please educate yourself about PTSD.  You never know if your spouse is going to be the one that comes home with it.  And you never know when you will be the first one to notice symptoms in a friend or colleague and that might be what saves their life and gets them to seek help.



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Monday, June 17, 2013

A Constant Tug Of War

So often I find that our life feels like a game of tug of war.  We fight so hard to tug in one direction but it means that our rope becomes shorter on the other side.  Every time we improve in one area, it seems that a different area suffers and becomes the problem.  We are constantly moving around our life trying to find a balance that feels unobtainable.

We are speaking and have been for quite some time which is good.  But other parts of our life suffer now.  And our communication isn't meaningful.  I often feel like I'm asking too much of my husband, of our life and of myself.  I feel like I shout, "I just wish he would talk to me!"  And when he does, I say that our conversation isn't meaning full.  Maybe that is why nothing ever finds balance.  I'm not sure.

But while our life is still very superficial, we are talking and that is something.  That is more than something.  I wish we could really talk.  I wish i could tell him about my fears and my hopes and my dreams.  I wish he would tell me his.  But we are not to that point yet.  Our relationship is still precarious and our life is not ready to be mutual just yet.

It sounds terrible to say that.  And when I said it to my counselor he was upset.  I found that I felt like I was yet again facing someone who just doesn't understand this life.  It seems I always feel that way.  Most of my life is made up of the little victories and I will take superficial conversation over none.  Or better yet, over being yelled at and berated.

But now we have issues in other areas.  He is back to not listening to mean when I have something important to talk about.  I am back to feeling angry again.  And maybe I feel angry because of the strange calm in our home.  When things are crazy and unsure, I tend to close off to protect myself from the wrath that is coming, but when things are calm, I have no reason to do so, so I am allowed to feel my anger.

It is just a constant tug of war.  We are constantly pulling to work on one thing, but it often means taking from a different area as a result.  I often wonder if we will ever find that balance, but I know we will keep trying.



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Monday, June 10, 2013

Arrogance

I know that I am limited in my experience of PTSD.  I'm limited in that I know my husband and a few others, but I only live with my husband.  If others with PTSD are as good at hiding many of their symptoms, which I assume they are sometimes, it means that I can't speak for what I see in those we know.  I have no idea what they might be hiding.

So, when I speak about what's going on right now, please no that I am not trying to insinuate that everyone is like this.  I'm simply telling you what I've seen in my own spouse.

And what I'm seeing is arrogance.

I'm an internet lurker.  I like to read, but rarely comment.  This is true for other blogs and true for websites in general.  But I've been seeing a lot about the spouses bullying other spouses and Facebook pages bullying spouses.  I've seen Ketchupgate and all of those others things directed at military families.  But whenever I speak to my husband about these things he rolls his eyes.

It's actually quite painful when he does.  He rolls them and gives me the arrogant look of a man who agrees that I'm not allowed to have opinions on military matters because I'm not a service member.  But what he doesn't understand is that these issues affect me through him.

While I may not be the service member and I did not sign my name on a contract, each decision the USMC makes for him affects me.  He may be the one deployed, but I am deeply affected by it, as is my whole life.  And I get so tired of him treating me like I am not allow to feel hurt or offended when others do not take that seriously.

I once said something about "going through a deployment" and got the coldest stare I've ever gotten.  I get it, the word choice isn't great, but in this life, the other options are so wordy and when talking to civilians it's too hard to explain it all and when talking to other spouses, they understand exactly what I mean.  We all say it.  "Our unit" "been through a deployment" etc the list goes on.

I've tried very hard to get in the habit of saying "my husbands unit," but really, I don't think I deserve this treatment from him.  I understand the difference in our situations.  I get that what happened to him did not happen to me directly, but I have been directly affected by it.  And I've grown weary of being treated like I don't know anything and am not entitled to feel anything about our life, the military dictating my life even though I am not the service member and the world revolving around my husband, his PTSD and the USMC.

I don't know what has caused this shift, but a few weeks ago, he started strutting around the house and acting like I don't know a thing about life in the real world.  Somehow, his diagnosis makes him superior to me.

I kind of wish he would go back to not speaking to me...


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Friday, June 7, 2013

The True Cost of Military Benefits

I'm sure by now you have all heard of Ketchupgate.  It was the response to a Washington Post article describing the militaries lavish benefits and why it's not big deal to cut them.  And while I understand cuts need to be made, that's is not what upset me about the article.

What upset me was the idea that military families are some sort of burden to the US public and that our service members have not earned the benefits they have in the same way others might at their jobs.  The only real difference to me is that no one seems to remember what paid for these "lavish" benefits military families have.  And that is a price that civilians aren't willing to pay.

While you can complain that your tax dollars paid for someones healthcare, consider what earned those benefits.  Someone woke up one day and pledged their LIFE to their country.  Their life.  Not 20 years for some healthcare.  Not a few extra days away from their families for cheaper groceries.  The benefits our military families are receiving have a heavy price tag indeed, it's not financial.

Consider that for a moment.  My husband agreed to pay with his life.  Up to and including the blood that beats through his heart.  And while he did come home alive, at what cost?  What cost did he pay for his nation?  So I read the article in the Washington Post and I have to ask the author: What are you willing to give for healthcare?  For 14 types of ketchup and a steady paycheck?

My husband knew the cost of his choice.  I knew the cost of mine when I married him.  But does that negate the actual cost?  Does knowing you might die mean you have no right to feel that the cost might be too high?  Does knowing your life is what you might give up for others mean that your nation has no need to take care of you?

If we can care for the sick and the tired and the poor, why not the valiant and the honorable and the widows and the retirees?  There are people screaming at the idea of cutting welfare and WIC benefits, but who is advocating for our military?  Who is shouting that the price they pay and their families pay is more than enough?

My husband gave up so much.  He lost so much.  And while this journalist is crying about the benefits he receives, he is not considering the cost.  The true cost.  The actual cost that our military pays every generation, as a debt to a nation that doesn't seem to care.



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Tuesday, June 4, 2013

I'm Sorry

For whatever reason, my brain hasn't been functioning for days now.  Weeks really.  As most of you know, this life can be a bit unpredictable and rolling with the punches has been particularly hard as of late.

For those of you who have been reading for a while, you may well remember when I spoke about retreating to my bedroom.  I have done that again and have not been doing very well at life in general.  I still need to pick a giveaway winner, which shows me that I probably should not do giveaways anymore.  I feel terrible that I have let everyone down on that front.

The truth is that I love that I can be so open and honest here, but I am not liking who it seems to have made me become.  I'm a whiner.  I get emails commending me for my honesty, but I'm doing nothing that is all that wonderful.  I feel like I log on here wanting to just write about our life, but it seems to be that I end up just writing about pain and sadness.  I don't want to be that person.  I don't want to feel like that is all my life is.

It's not.

But as a result, I have done what I've done in the past: Logged on a 100 times, each time failing to write anything because I am unsure of what to say.

The ups and downs are still rolling in and out far to fast and the moods are still hard to predict.  We laugh more, but I feel like I cry more too and I"m not sure if the laughter is worth that price.  I have found myself back in my bedroom, hiding from the world.  I have found that I am afraid to log onto my blog.  Though it's a place that I can work through things emotionally, it also means that I have to confront those things and right now, I just can't.  I want to, but I just can't.

I'm deeply saddened by who is seems that I have become.  My head knows that this is all very normal in PTSD land, but my heart just breaks when I look into the mirror.  I know that I am more than the sadness that I have, but I don't seem to be able to find that girl again.  And my whole life has been consumed for so long with finding my husband, somewhere in there, somewhere buried deep inside of him that I can't always find the time to find myself.  I have done what I have spent months warning you all not to do.  I have allowed myself to be consumed by my husbands diagnosis and I no longer know who I am.

All I am is the wife of a man with PTSD.  All I am is the person who takes care of him.  I am no longer me. And I'm sorry.  It has prevented me from being a source of comfort, laughter or even just the blogger who tells the truth.  With all that we have had going on as of late, I was sucked so slowly into the danger zone that I didn't even see it happening until I was too far gone.

I hope to be back out of my room and back to the real world soon.


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Monday, May 20, 2013

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.” 

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. 



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Monday, May 13, 2013

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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