Wednesday, January 22, 2014

Nightmares, Flashbacks, and Sleepless Nights

From the start of mine and Squee’s relationship, I knew about his PTSD. Of course, this was back in 2004, when PTSD was misdiagnosed and often completely missed by doctors who didn’t have adequate training to identify it. We battled PTSD before it had a name to attach to it, when we categorized it as nightmares and flashbacks and insomnia, when we compartmentalized his reactions to minimize the effects, not realizing we were doing more harm than good in his healing. Often, when the cycle would come around to the darkest parts of PTSD, it felt as though things for us were hopeless, and that clinging to a rock in the middle of a raging river would be a more solid foundation that the one we’d created. That helplessness and hopeless feeling was the worst part, standing by his side as a proud wife and watching every moment as he crumbled, and not being able to help.

The scariest part for me came at night. During the day, he could voice his issues, and give insight when he struggled. But at night, PTSD came for him, and would take him from me while he slept. There, in his dreams, he has no quarter, no rest, no reprieve, just hours upon hours of torment and torture and memories that he can’t escape. Those nightmares, he endured almost silently, and had I not been lying mere inches away from him, I never would have known. Until, that is, he started sleepwalking.

He’d had problems sleepwalking as a child but had outgrown it, for the most part, until PTSD found a way to change that too. The first night it happened, I awoke with a start to him standing at the end of the bed, facing away from me and into our bathroom. There was a light on in there, and it cast just enough of a glow that I could see his face reflected in the mirror, clear enough to see that his eyes were closed. Instinct kicked in, reminding me not to wake him or touch him, even though my hands itched to do just that. I started talking, quietly, and he muttered responses to questions asked by others in voices from his past. Still, I kept talking, and I found the words that reached him, and asked him to please come back to bed, please come back to me. Like a small miracle, he heard me. Without ever opening his eyes, he came back to his side of the bed and stretched out, letting out a huge sigh that came from somewhere deeper than his lungs. And he slept, again, if only for a little while.

Flashbacks are entirely different. Sometimes asleep for them but often awake, it is not merely seeing or hearing such horrific things, but instead a vivid reliving of each and every experience that has compounded and culminated in his PTSD. When he’s awake for a flashback, his open eyes see only the sands of Iraq, not the home we have, the children we share. He sees his superiors, his brothers in arms, and even his enemies, when no one stands in front of him but me. His ears are deaf to the voices of doctors, coworkers, and friends trying to help ground him to the present; he can hardly hear over the sounds of war, gunfire, explosions, shouted orders. But somehow, there is the tiniest part of him that can still hear me when I ask him to please come back. This is pretty effective when he has waking flashbacks, night time ones are trickier.

Asking him to come back while he’s having a flashback when he’s sleeping doesn’t always work, and hardly ever on the first try. Sometimes, I repeat myself until the words run together like a mantra, and I watch in fascination as the tense muscles of his jaw relax and his brow smoothes back, erasing the signs that he had been in torment just moments before. Occasionally, whispering my request a few times produces the same results. But he always, always finds his way through the blackness and back to me.

With the horrors they face during sleep, it’s no wonder that so many who suffer from PTSD also struggle with insomnia. I cannot say that if I had Squee’s memories, that I would fall asleep so easily at night for fear of those dreams. When sleeping is difficult for Squee, it is much the same for me, sleeping in fits and spurts long enough to keep from feeling exhausted, even though I’m still tired. Thankfully, Squee and I have the unique advantage of being able to be insomniacs together, because we have no schedule outside of the one we make for ourselves. (All this will change this fall as Siren enters Kindergarten and we adapt to her school schedule.) As strange as it may sound, Netflix and streaming movies these past few weeks have helped curb some of the worst episodes of insomnia that we’ve suffered in years. But still, there comes a point each night that sleep must be attempted, and we prepare for bed and the possibility of nightmares, never knowing what the night might bring.

Monday, January 20, 2014

PTSD Personified

When you think about the term Post Traumatic Stress Disorder, I bet a face swims into your vision. Depending on your own experiences, it could be the face of a soldier, or of an abused child, or possibly you see a glimpse of yourself. I think that most people who live with or close to PTSD often picture the disorder as the face of the person who is affected, but I have long felt that this is completely unfair to the person suffering from PTSD. It is important to remember that PTSD doesn’t define an individual, but is only one aspect of that person’s life. So, while in our first days together, I pictured PTSD as my husband in uniform, gritty and bloody and hardened in a way I’d never seen him, as our relationship progressed I learned to see PTSD a different way.

In our early twenties, we did what people without children do- we went out with friends, went to parties, and were around a lot of people who were young, like us, and also, like myself at the time, pretty stupid. (I say this, because now as I’m a bit older, I see how utterly clueless I was on so much. I can only imagine the wealth of knowledge I'll be at 40.) During one such get together, there was a particularly pretty girl, who locked her eyes onto my Squee and kept them there, staring in awe. Admittedly, I knew why. Squee isn’t just a good man, he’s handsome, and he has a devastating smile when he chooses to use it. It melted my heart the first time I saw the corners of his mouth turn up, so I can sympathize with another woman who finds herself lost in the same way. But, only to a point.

The end of my sympathetic understanding came when the interested individual was informed that Squee was, in fact, attached to another, and she chose not to turn her attentions elsewhere. It had happened before, and as usual, Squee shrugged the attentions off and paid the bright eyed girl absolutely no mind, but she persisted. And so, the primal, possessive part of me took over, and she and I had a bit of a confrontation (non-violent) that led her to going home earlier than she’d planned. Not many in attendance noticed, thankfully, or it could have turned into an embarrassing situation for Squee. As it stands, I’m not sure if Squee ever really noticed the whole ordeal. But I did, and that girl’s image became ingrained into my mind, synonymous with something that is trying to take Squee away from me.

Fast forward several years, three daughters and dozens of my girlhood insecurities laid to rest, and my visualization of PTSD has morphed into one, not of a hardened Marine with a mortar tube and blood on his neck, because that was my Squee, but of a red-dress wearing woman who keeps trying to pull my Squee away. She has her claws dug in to him, even though he wants nothing to do with her and tries to ignore her. Because, that is what PTSD does. It tries to come between you and the person who suffers, intentionally trying to drag them away, back to the darkness and those hopeless places where it can be in control.

If you personify PTSD, all that PTSD wants is control. But you know what? Years ago, I wouldn’t stand by and let some random girl take him away from me, and I won’t stand by and let PTSD take him either. So, when PTSD rears it’s ugly head, I see three things: Squee, and me, and the red dress wearing PTSD. And while she might have her claws in him, he won’t give in, and I won’t give up. We’re stronger together than we could ever be apart.

Sunday, January 19, 2014

A New Chapter for a New Year

It seems as though it's been forever since I've been able to write on here about the changes that have come to our family. For one, we moved. In October, we moved into a home of our own thanks to the amazing organization called the Military Warriors Support Foundation. Through their program, our family was given the opportunity to be placed in a program under which in three years, we will own our home. And although we moved an hour and a half away from our hometown, I have to say that we couldn't be happier with the move. The house is beautiful, our daughters are happy here, and it has forced us to come into our own instead of attempting to rely on others, something we had done for far too long. In short, this has been life changing.

To make things even better, we were invited to attend the 2013 Coalition to Salute America's Heroes annual Road to Recovery Conference in Orlando, FL for a week. We went with Siren and Banshee, Echo stayed in Tennessee with my parents as she was a bit too young to enjoy the benefits of being around kids like her. Ah, but thankfully, we were not.

The R2R conference changed our lives, in no small way. I spent much of my time in tears, absolutely in awe in the presence of so many heroes and their families. In awe of the incredible people who organized the event, the wives working behind the scenes, and the bravery from servicemen and women who struggle with PTSD and are able to talk about it. I wondered, while we were there, why in the world we hadn't known about the program years before. But then it hit me, that years ago, we wouldn't have been at the same place we are now, at a point in our lives where we were ready for the change, ready to make things better, if not for ourselves then for our daughters. God willing, we will be able to be involved with the Coalition on some level, to give back just some small part of what they have given to us.

And now, we sit here in January 2014, a new year and a new appreciation for all that we have and all that we've accomplished. We allow ourselves time to breathe. We take a slower pace at approaching difficult things, coming from all angles before we find our solution. But mostly, we allow ourselves permission to live with PTSD, to be open about it, to tell others and spread awareness so that we can break through the stigma that so often follows our service members. We have no reason to be quiet anymore, and every reason to shout.

And so, this first blog of the new year is much more than that to me. This is the first blog of a new chapter in our lives, hopefully the first of many. Thank you for reading, laughing with us, crying with us, and supporting us just by stopping by this blog. 

Monday, August 26, 2013

Our Fight

Today June 1st sparks the beginning of PTSD awareness month, and today I'm rocking my teal t-shirt in solidarity for PTSD awareness. I feel like this would be a great time to address a common question that I get in my Facebook inbox whenever I link my blog. And that question is:

Why do you call your Blog 'Worth Fighting For'?
Well, simply put, because life with PTSD can sometimes seem like a constant fight. Those of us close to PTSD fight every day against a system that seems uncaring. We fight against a society that doesn't understand. We fight amongst ourselves because of inequality of VA care between the different veteran eras. We fight for our rights, for awareness, for fairness. But 'fighting' doesn't always mean violence!
I get extremely annoyed when people assume that simply because my husband lives with PTSD that our home is somehow unsafe or a proverbial pressure cooker by nature. The only person liable to explode violently when approached with well intended "advice" on my safety and the safety of my daughters is me. I never, ever react well to that kind of intervention. So, I fight the stereotypes that follow PTSD, one well-meaning person at a time. And today, I'd like to challenge you to do something for PTSD Awareness Month.
If you live with PTSD, as a sufferer or as a loved one, share your story. It's never easy, to attempt to explain what you go through, but knowing you're not alone can help. Sharing your story helps others who struggle, those don't understand, those who are misinformed. It helps obliterate stereotypes and stigma, and create understanding and compassion. I'm fond of the quote "there is not a person in the world you would not love, if you have read their story". I find this especially true when dealing with PTSD.
If you don't live with PTSD, take this month as a challenge to educate yourself. There is an overwhelming amount of information at your fingertips, and just a little education goes a long way in furthering  general understanding and acceptance of PTSD . Learn what to say to those with PTSD, and what not to say. Realize that asking probing questions about military service or combat action isn't appropriate, and can trigger flashbacks. Asking how someone's feeling that day probably won't. It's fine to tell a person with PTSD that you're there for them, it isn't fine to say that you understand what they're going through.

Realize that for those unfamiliar with PTSD, it's not uncommon to avoid being around or feel uneasy being near someone with PTSD. It's also vital to remember that combat wounded veterans with PTSD are, first and foremost, still human. They still need friends and family. Encouragement. Compassion. Support. Don't be shy of freely giving those things, you never know when kind words are needed.
In essence, to answer the many times over asked question, I named my blog 'Worth Fighting For,' because I believe my Squee, my combat PTSD veteran, is worth fighting for, in any way I can, every single day. We fight for his rights, for his care, for his health, and we will continue to fight, because he already fought for us.

Sunday, June 2, 2013

Dreaming of Home

Recently, it came to our attention that there are programs that award mortgage free homes to Post 9/11 Disabled Veterans, and we went scanning through pages of homes online. We found one an hour away from our hometown, with enough room for our family of five. I fell in love with the kitchen, from only four pictures, and have been gently approaching the idea in my mind of what color I would paint it, a nice happy yellow or a pretty, light blue, maybe? I don't dare plan too far, for fear of getting my hopes (and Squee's) too high, because to have them dashed now would be a setback we can ill afford. So, it's only a thought, a prayer running through my mind at different moments of the day, "If this is the home for us, let us get this opportunity. If it isn't, bless the family that receives it." But then, I had a dream about it.
I was in the kitchen, and Siren was singing along to a radio playing, helping me load the dishwasher. In the background, I could hear Squee and Banshee and Echo in the living room, searching for just the right Disney movie before bedtime. I could smell the remnants of garlic lime chicken, one of the family favorites, and it all seemed so perfectly real that I felt a bit disappointed when I woke up. That was a few weeks ago.
Not long after my dream, we received a phone call from the organization we had applied through for a home, Military Warriors Support Foundation. Based on our application, Squee's service record and his combat awarded Purple Heart, we move into our new home in October, coincidentally five days after my birthday and one day after Siren's. Realistically we wouldn't have been financially able to own our own home, at least not within the decade, but this program keeps payments at a minimum and helps with financial management and counseling. We've been too excited to even share the news aside from with family, it was shocking to be honest and of course we're always afraid of that dreaded downside or a last minute mistake that would cost us this opportunity. But I can't contain myself much longer. The daily prayer has changed from "if this is what is right for us" to "thank you for this opportunity". Dreaming of a home has now become planning our future, and I'm so excited to see what lies in store for us!

Sunday, May 26, 2013

Seven Things I've Learned to Love About My Squee

Today isn't just Memorial Day at our house. Today is a special day for Squee and I, the seventh anniversary of the day we walked down the aisle and said "I do".

Somedays, it doesn't seem like we've been together this long. Others, I can't remember what it was like 'before' we were together. I've said it before, and I'll say it again, my life began anew when I met Squee. Some say that their wedding day begins a new chapter in their lives, but for us, it feels like a whole new book. And in seven years, I've been able to do quite a bit of research on this particular novel, and trying to boil down all lessons I've learned with Squee into a handful of ideas hasn't been an easy task, but I feel like I learned them chronologically and each helped our relationship grow.

First of all, Squee has always, always believed in me. When we first met, I was starting my first semester of classes at the local community college, and had all kinds of crazy, half-put together plans and stitched up dreams. He thoroughly believed I could do any of them, that I would do any of them, and he has never doubted me. That sort of unyielding faith in me, in my judgement and my abilities, was something completely unfamiliar to me. Never in my life had I experienced something so humbling, and what's more so, is that after seven years he still has that self- same faith in me, and has taught me how to have that same faith in him.

 Secondly, my Squee is probably the most caring person I've ever met. He doesn't always get the chance to show it, being the man of the house, but this is the man who made me custom shoes for Christmas. Pink Converse Jack Purcell oxfords with custom design tongue and the word "Woman" on the sides, a gift so sweet it had me close to tears. I know for a fact that no one else on the planet would have thought to make me shoes for Christmas, but my Squee did, because he knows how much they would mean to me. They reminded me that I was his Woman, his something special, and I felt blessed when I wore them. Today, they are my 'special occasion' shoes, just because they came from my sweet and loving Squee.

  Squee's parenting capabilities are awesome, something I had always suspected but got to witness firsthand when our oldest was born. With three girls, one would think he'd be chomping at the bit for a boy, or at least hoping for a tomboy. But no, he accepts his daughters as they are, for who they are, albeit they're all very young. Siren is adamant that she is one day going to be a firefighter. Squee is her inspiration, to put it into four year old logic: "daddy was a Marine, Marines are heroes, Firefighters are heroes too, I want to be a firefighter since we already have a Marine." (For the record, she also likes the idea of being a superhero but doesn't want to wear a cape.) He's proud of them, he loves them, and has no compunction with telling them as much as possible. From the first moment he held our Siren, I knew he would far outshine anyone's expectations of him as a daddy, especially his own. I don't know if he realizes he's a great dad, even when other people tell him, but there's a reason that "dada" has been each girls' first word.

 There is next to nothing this man won't endure for his kids. I saw that one first hand on my epic meltdown at Epcot (reference to previous blog entry, Secondary PTSD, Strength and 'She'). I fell apart while he held it together for our daughter, because she needed him to be strong. For a few days, he endured crowds, noise, stress, and a veritable melting pot of all of his nightmares rolled into one, so we could take the opportunity we'd been given to take our Siren, who was an only child as of this vacation, to the Disney parks in Florida. While we were with family, the brother and family my Squee doesn't get to see because they live across the country and who were our amazing sponsors for our trip, and Squee's mom, dad and grandma, his stress level was constantly through the roof. He kept himself fairly composed with medication, but he was still operating at a high level of anxiety the whole time we were away from home. I feel like his willingness to undergo that kind of stress just so she had a normal childhood experience just goes to show his selflessness.

 Squee is so incredibly, unbelievably strong. He has seen things that not even he could understand, lived through moments that could have been his last, and yet he is expected to push those moments aside and focus instead on the now. It's an almost impossible thing to ask of anyone, and yet he does it anyway. On days when even trying drains him physically and mentally, he tries anyway. It's not within my Squee to simply quit. But he isn't just strong, he inspires me to strength. I'll never forget the day in the kitchen not so long ago while I had a nuclear meltdown. I was caring for a screaming newborn baby Echo, Banshee was hanging off my hip, and Siren had just gone bananas with goldfish crackers at the kitchen table. This had been our pattern for the last twelve hours while Squee busted his behind at work, and now supper was going to be late no matter what I did. I felt the walls closing in, tunnel vision made my head hurt, and I was ready to just cry. Squee scooped Banshee off me and into her playpen. Then he took my face in his hands and said someone thing to me that changed how I see myself. Squeeze told me that I was stronger than I knew, that he saw it from the start and it was one of the reasons he married me. He knew how much I needed to hear that, and each day I try, even on the harder days, to be strong because he sees it even when I can't. 

  We have always been Squee's first priority. Whether at work or out with friends to relieve some stress, he never fails to check in on me and the girls, just to make sure we're okay. He takes his role of protector and provider seriously, and although I know how hard it's been for him in light of recent events and attacks within the US, he doesn't demand or insist that we stay home. He fights down the fear and dread that PTSD brings along on every outing, regardless of whether or not he is with us or at home. I feel the fear too, when we go out, and the anxiety that makes my skin crawl, but it's no match for the leg-twitching, heart racing, floor pacing torment he goes through. But we take our kids to the park, we go grocery shopping, we make an effort to get out and have fun with our family, because we are his first priority. If we weren't, he wouldn't be seeking help now. Squee told his therapist as much, one of the reasons I think she likes his attitude. He said he wants to be different for his daughters, and he is working his way towards being as active as his boundaries will allow. Somedays, when PTSD gets the best of us, it will mean we're limited to what we can do. Other days, when he is victorious and feeling good, it will mean new adventures for our girls, and for me, and the chance to see him laugh and smile and know he's truly happy, because he always ensures that his family is happy.

  I did not know what love meant until I met Squee. I had thought, for a long time, that I understood love as an odd mix of emotion, notions, songs, and even Biblical references to what love should be. And then, I met Squee, and all those ideas and poems and verses and feelings suddenly made sense. This was what love meant. I had never met another that I considered changing my life for, but Squee made me want to change for the better. I've never considered myself to be worthy of someone's love and devotion, but he gave it without any conditions. He is the first person I have ever completely trusted, and he appreciates it because he knows how difficult it is for me. He is the man that has been my partner in creating a family, there every step of the way for our girls and for the pain of a lost pregnancy. See, I had never envisioned myself as a mother, until I met him. I think it's because I hadn't met my children's father yet, and when Squee was introduced into my life, so many things fell into place at once. It was as though I realized what moms meant, to be blessed to have kids, and I wanted that with him. He is my rock, my heart, my husband, and for a multitude of traits and reasons I can't even begin to touch, I love him and thank the Good Lord and the stars above that we've been blessed with seven years of marriage, and I can't wait to see what the years before us have in store. I love you, Squee. Happy Anniversary!

Thursday, May 23, 2013

A New Angle

Today, as my 'do something for you' weekly activity, I'm sitting at a salon waiting on my turn in the chair to chop off my hair a bit. I truly despise this chore, and got away with my last haircut being by my mother in November (yes, it's May) and I desperately need some TLC to be paid to the coiff, since I can't be bothered to do it myself. So I'm flipping through magazines, blogging, and waiting my turn to try things from a new angle.

My biggest indecision? Bangs. I haven't had bangs since childhood. But aside from them being the new trend that other people are already over, I feel like they would add depth to my look. I'm still unsure even now, although I'm holding a picture of what I want in my hands, but it's not the hairstyle I'm iffy on. I've always been unsure of change.

Thinking about changes takes me back in time seven years to the week before our wedding, when I spent time packing for the first time in my life. I was picking and choosing what was going to come with me to the apartment I was going to share with Squee. I was holding on so tight to such fragile, insignificant things, and took most of them with me. Over the last seven years, many of the things I once saw as vital and important have been scattered or lost, some sold at yard sales and some given away. I've learned to hold on to the things that matter instead. What matters to me is my family, my friends and my faith, and all other things I can let go of, because what matters gives me strength. So, now it's my turn to swivel around in that shiny chrome seat and give a new 'do a whirl. And here I go, without fear.

We chat for a moment about my ideas for a cut, I do the customary showing a picture for a vague description, and the master's scissors start flying. The next thing I know, she has carved this lovely shape into my poofy, frizzy hair. She went so far as to style it a bit to clean up my look, a gift from one mom to another, as we chatted about Memorial Day plans. I got to share that it's our 7year anniversary on the holiday, which she found delightful. But when she was done, it wasn't quite what I wanted.

Now, this is usually where the Quiet PTSD would typically take over, the timid side of me that wouldn't raise a fuss would rise up and I'd bite my tongue and grouse about it later. But no, not this time. I like this stylist enough that I can't hold something against her that isn't her fault. If I walk out this door disliking my haircut, it is no one's fault but my own. So, I swallowed past a lump in my throat and said, politely,

  "Can we go just a little bit shorter on the bangs?"

Sweetest stylist I've had since I worked at a Great Clips, she trimmed them up little by little until she got the perfect length, that "just right" look that I immediately fell in love with. I loved the way it made me feel when I saw myself in the mirror, and that's been hard to come by lately. I feel like somehow, I'm becoming the woman, the wife, and the mom I'm supposed to he, and now I'm making the outer shell resemble the soul inside. It's going to be a long journey, but it will be worth it.