Tuesday, March 27, 2012

What's It's Like To Live With PTSD and TBI

I recently went to the grocery store the other day and as I was loading the car up, someone saw a sticker on another car's window that said "Medicated for your protection-Veteran with PTSD". My husband and I have always maintained a good sense of humor and not been ashamed of his injuries including his PTSD. We recently ordered such a sticker for our vehicle and obviously the owner two cars down, had the same sense of humor as us. As the lady walked past with her husband, she said "I wonder what it's like to live with someone with PTSD?" with the same disdain in her voice as if she asked "what's it like to live with a monster?". I hung my head in shame as they walked on chatting about what they thought our lives would be like but as for me? I didn't even have an answer at that time and so I let them walk on by. Normally, the Mistress would be the first to stand up and educate, erase stupidity and hope like hell that the media hadn't completely ruined someone's idea of what these invisible wounds are. I just couldn't and didn't have the strength that day.

On the drive home, I asked myself "what is it like to live with PTSD and TBI?" and the answers flooded me as the silence of the car wrapped its safety blanket around me. I had to pull the car over to the side where I could rest my weary head against the steering wheel and just let the tears come. Why could I have not stood up and said "You want to know what it's like? Here ya go, Lady".

It's waking up every day not knowing who you will wake up beside or what kind of mood he will be in.
It's living with a total stranger that you must care for and be treated like the enemies they fought against in Iraq.
It's eating breakfast, lunch and dinner at home or out always every day, by yourself even when your Veteran is with you. 
It's never having your spouse to talk to anymore. 
It's trying to soothe the fears of people he can see on the side of the road even when you don't even know why he is so afraid or what to say to make it all go away.
It's assuring him that bags of trash or dead animals on the side of the road are not roadside bombs.
It's not being allowed to enjoy happiness, love, or things you can enjoy because he gets jealous and ruins it.
It's being blamed for everything that went wrong, including what happened in Iraq. 
It's sleeping next to someone who never goes to bed without nightmares and you learn to expect each and every sleep walking move he makes. 
Its watching someone every day who gets worse with OCD behavior that you can't explain or understand. 
It's lying to your friends, family, co-workers, and acquaintances that "everything is just fine" including yourself.
It's being challenged in every way possible with some obstacles so difficult that you don't know how to get past them. 
It's loving someone who hates everything about you no matter how hard you try or how much you help them.
It's fighting for someone and loving them so much that you sacrifice it all only to have them push you away.
It's having someone be so terribly cruel and know it, but finds it easier to walk out the door than saying "I'm sorry". 
It's knowing medications, appointments, and his VA medical records like the back of your hand and not know when your last or next doctor's appointment is, or even when the last time you had a break to yourself.
It's taking care of them every single day when they are sick, but never get the same in return. 
It's a game of pleasing, soothing, calming and redirecting twelve or more hours a day just to keep some sort of peace in the house. 
It's being a single parent and having to explain to your smaller children that their daddy really isn't mad at them, he is just sick. 
It's juggling parenthood trying to be both mom and dad at the same time. 
It's having every special occasion ignored, sabatoged or completely forgotten about. 
It's having everything taken away from you and not understand where it went. 
It's not being allowed to cry, grieve, be angry or have feelings hurt because you are supposed to be what they want you to be. Mine would rather have us all miserable than enjoy anything he can't.
It's fighting against something much larger than yourself and wounding yourself in the process. 
It's having to take care of yourself without help from your partner because they just don't care and don't want to.
It's not being able to have civilian friends or even normal military friends because they just don't get it. 
It's finding comfort among others like us because we don't have to explain or be ashamed of their behavior.
It's walking a crumbling walkway and losing your footing with no one to catch you if you fall. 
It's talking rationally with an irrational person.
It's having your heart trampled on every single day but still finding the strength to keep going even when they tell you they would rather be dead. 
It's saving their life only to have them blame you for it every day thereafter. 

There are days where I swear I don't know where the strength comes from. Other days, I am so weary to the bone that its hard to put one foot in front of the other. There are days where I feel sad for him and that makes up for half of what he has done wrong. There are days where I know I am all he has. Other days I love the hell out of him. There are other days where I wished I hadn't saved his life. It's living the whole concept of Misery Loves Company because even when good things happen....we don't know how to react because we have lived in chaos, stress and bitterness so long that it's what we are used to. It's wanting more out of our lives and still getting hurt, even though you know in your heart and mind, that is all you are ever going to get from them. It's being in a crowd and knowing that not one single person hears you no matter how loud you scream. It's knowing he will never hear you at all.

It's a battle with the world, with them, the government, the military and with yourself. You argue back and forth the reasons why you should stay or why you should run on a daily basis. The list grows every day with reasons on both sides of the argument leaving you no answer that is reasonable. It's living without a safety net to catch you if you fall and knowing there is no future that you can count on because you can only take it day by day, hour by hour. It's watching them forget things, get frustrated because they are no longer able to live a normal life, and watch them helplessly sinking further away from you when some days bring them the truth that they are disabled for the rest of their lives. It's not knowing what else you can do to help them and when you reach out your hand to hold theirs, they smack it away. It's taking on the world for them and sometimes winning, only to have them not care one way or the other. It's backing them up only to find them turn away from you when you need them the most.

There are days that we live for when they smile, laugh a little, and try just a little harder. That's what gives us strength. There are others where the bad side comes out and you are worried not just for you and your family, but for them too. It's up and down, side to side and never knowing which direction you are going.  It's about survival, holding your family together through the tough times and not having all the answers. Sometimes, we lose it all. PTSD alone can be like a pack of hungry piranhas going after the first drop of blood that is spilled and not knowing whether we as the family will walk away whole. Other times, laughter and a good mood can build us back together.

That's what its like to live with PTSD and TBI. 

I wondered all day today if I had simply spoke up...would that woman have listened and maybe not have such a nasty tone and disregard for us? Or would she simply just not care. My husband cared enough to go overseas and fight proudly. I cared enough to wait for him to come home and gone through hell ever since for people like her. I wonder from time to time, how many people really care and appreciate what they have and what they have been given. Does anyone really care about anything anymore other than themselves?

We Are More Than A Bumper Sticker,

Tuesday, March 20, 2012

Monumental Victories and Then Some

Since my last post, it seems things have settled back into a semi-screwed-up-normal-for-us routine. Really, it's been busy since my husband's C&P evaluation back in February. I may have mentioned that the C&P really went well with such a nice doctor, that I would like to send him flowers! For many who know me well....pfft that is just mind blowing there in itself! Moi? Send flowers? Hell hath frozen over right? Yes Dear Readers, you read that last statement from the Mistress herself. In the past five years, I have to admit that the pages in my mind of the VA have been roughly colored with some really bad crayons. However, the last few months have given this gal some appreciation for the "good" guys that are there and who care. After the C&P, its been rough though here at home. More so because I was so relieved and for once, things were going in the right direction for the first time since he landed after coming home from the war. All we could do was wait to see what happened which led him to worry. Things started to happen that I didn't think would ever come to pass. Some things happened that seemed like it would be a million years away...and here was my husband still not happy with anything only slipping further from me in the process.

A while back, I posted a blog about JP Morgan and Chase and Bank of America now providing military services for Wounded Warriors and help with foreclosures, percentage rates, and mortgage payments for ALL those who are military and Veterans. I worked with Chase and applied for the percentage to be lowered on our rates and in November of last year, we were notified that we were 1 of 100 military families that JP Morgan and Chase wrote off the mortgages and debt for. I really didn't believe it at first and I must have given them a "You have got to be screwing with me!" lecture on the phone as Fed Ex promptly showed up the following day with a letter acknowledging such a write off and a "Yes, we are serious". As of this past week, we got our home deed and property title. We never expected such a gift but I have to say that Chase bank treated us kindly and really cared about my family and my husband. They listened to me...and for the first time, I felt like some of these corporate, large businesses really heard what I had to say. Matter of a fact, I spoke to our Military Services manager so much that I indeed will miss talking with him! We were blessed to have such a gift given to us and what a relief as we didn't have to worry about our mortgage anymore which was about the only thing we had left that was truly ours, our home. Everything else we had has been sold off, savings dwindled down to zip, and we weren't even making it month to month.

All this stress was on me and lord knows the gray in my hair shows it! All I could do through the hard times was say "It'll be alright! We've made it this far! Don't give up on me now!" like some cheerleader with a plastered smile that fractured and crumbled when I climbed into the tub alone and sobbed. Then I would go to bed at night praying to God that he knows what he is doing. Hoping he knew what his plans were for me and that I was seeing the signs. Then I would sit awake for hours soothing my husband's nightmares all while making myself believe that everything will be ok. The rest I figured would work itself out, and kept everything I had crossed so I wouldn't let my family down. The scariest part was the fear of letting my family down and all of us falling apart.

Our biggest hurdle was the VA and to be honest with you, you must have seen and read how scared I truly was about this C&P re-evaluation. Why I don't know because all the medical documentation was there but with the luck we have had....nothing scared me more than having someone do it who could have cared less which is exactly what most of us have encountered. I kept planning for the worst, having a back up plan for even far worse news, and a second escape in case all else fails. To be honest with you, I didn't have a back up plan for my sanity or a magic pill to give me more strength if that appointment had gone badly. We assumed the VA would keep my husband at his regular rating, leaving it at temporary once more. We would be put back into limbo until at least, the PEB was done. The letter stated that the VA decided, based on medical documentation and case files, that my husband had been awarded Permanent and Total disability.

I have to tell you that looking back, I don't think I have cried as much in my entire life than I did then. It was monumental...I wanted to cry, laugh, breathe, exhale, scream, shout and run around in circles kicking up my heels. If you are old enough to remember the movie "Rocky", yeah it was pretty much the whole "Eye of the Tiger" moment for me. I couldn't wait to show my husband, thinking YES! FINALLY! Maybe now he can relax. Maybe he will finally see how hard I have fought. How I stood up for him and many by voicing our story. How I may not have taken a bullet for him, but took many blows for him these past years. I thought maybe he would now know how hard I worked the past three years, and know I did it for him without a single "I love you" in return. Maybe just maybe he would know I loved him that much to fight.

When I walked in with tears and sputtered out "You got it. Permanent and Total". He said "Sweet". Sweet? That's it? I cried harder. It was a victory for our family and won that had many many costs that can never be paid back and that's all he could say was "sweet"? He went outside to putz in the yard, pulling at some weeds while I fumed all while crying. How could he not be appreciative of this? How could he not feel blessed? Have I truly missed how selfish and self-absorbed he had become? Why could he not let me just celebrate for all the work and finally exhale all the stress I have carried for all of us?

So as I chewed on his nonchalant attitude and envisioned the full "Hell hath no fury"  I wanted to invoke upon his ass, all while preparing the speech of "Do you know how many other Veterans are suffering in the same situation and worse off than us?". I got up to go chew his ass out but then I saw him staring out across the yard with his hands in his pockets. I stopped myself and although I really was hurt by his attitude, I instead walked back in the house. Selfishly, I wanted to be Balboa knocking it out of the park in the first sucker punch, and wallow in the victory and relief I felt. I made it through the hurdle that has made our life hell on earth and I am still standing. It didn't dawn on me until I saw him looking out over the lawn how lost and sad he looked. Although just feet away from me, he looked so far away. 

I realized then that it's not about money, it's not about the win, it's not about the disability with our Veterans; it's about losing. I watched him through the window and I realized that award letter really meant nothing but  knowing the rest of his life, he will live the war. For the rest of his life, he will engage in the battle of the mind with demons I can't save him from and here I was....wanting to celebrate. My husband always worked, I always worked. It was how we were raised. Everything bought was worked hard for and treasured. So while it was monumental, a blessing and one that was out of left field...I am not sure if he feels happy, sad or really anything. Victories these days for families like us can be sometimes disguised as happy moments until you sit and further dissect them. You want to relish in the happiness but then when you see your Veteran's face and hear the question of "what am I supposed to do now?" it breaks your heart because honestly, I don't know. It hit me then that this blessed award letter was merely a chapter closed in his life and now he isn't sure what to do. I have held his hand, stood in front of him, took the stress away, protected and loved like hell...but that simple question? I could not answer.

With those two victories, we were also able to get an attorney for the Social Security Disability claim we had been previously been denied twice on. From a referral from another Veteran's wife (Thanks Rebecca), I didn't have high hopes as we had already gone through a list of seventeen with no luck. This one turned out to be one who seems to know what he is talking about, knew exactly all the military jargon and the VA which was nice not having to explain much of it. Within half an hour, signed, sealed and delivered was our response for the hearing and an attorney we gained. That was another load off my weary shoulders as trying to rationalize with an irrational person, why SSD wasn't automatically granted in three days was becoming a topic of soreness with between my husband and I.

We ended our week last week filing what is to be our last tax return until (if) I can go back to work. Uncle Sam was generous this time but it dawned on both of us, that not having to file a tax return just seemed....weird. Kind of slammed the door on a lot of things as silly as it sounds and my husband has been withdrawn ever since. I have seen more enthusiasm in the latest "I'm Sexy and I know it" M&M commercial that he finds amusing than I have with any of these things that have come into play. I know its been a rough week with lots of mixed emotions and semi-finalization of things in our life...that I shouldn't expect anything more. The fighter in me wants to celebrate and go another round in the ring, but the wife in me still desperately wants to lay all this at his feet and say "here. **POOF** you are all better now!" I wonder from time to time though, if I am fighting for all the right reasons. Am I fighting for my husband because he like many others, were broken and discarded? Am I fighting for love? Or am I simply trying to pathetically gain wins so I can make him happy..........

We don't talk much anymore and if we do, its mostly about appointments or something in the news. I hate to call friends and spread our good news because I know in the end, I will get off the phone and feel horribly guilty because we got what they have been fighting for so much longer to have. It's not fair it seems so I don't say anything at all. I would never want them to hurt or to feel angry with me. The silence is killing me though and its a shame I talk to our Federal Recovery Coordinator more than I do my sister. I will keep going though. I understand my husband but it doesn't mean I can't secretly strike my best Rocky Balboa pose and scream "YES!".  I will keep digging and hope that finally I struck victory at the bottom. As always...I will leave a light for him to follow if he needs it. Next hurdle is the Physical Evaluation Board, but I am not so afraid now. I can do this. I am ready, US Army. Bring it on.

Wiping My Weary Brow and Raising My Dirty Shovel For All Of Us, 

Friday, March 9, 2012

Forgiving Doesn't Mean Forgetting

I've sat here at my computer much of yesterday and today debating how I could blog about anything. Can't really say things are much better, can't lie and hide my feelings by posting about a recent rant or a new resource I discovered. I simply just can't write but write it ALL out. How do I get my true feelings out without being looked upon as a bad wife? How do I prevent myself from feeling guilty? Would I look like the worst parent in the world? Would I become the worst caregiver to my husband? Then I thought of how would I suffer in silence without saying a word or screaming at the top of my lungs. I don't think I can do that. My heart can't stand the pain anymore. My heart is too heavy and overflowing. I thought the words would easily flow but yet, here I still sit........

(one hour later)

I once read a stupid self-help therapy book that said if you say to yourself, mentally or out loud, or to the person you needed to say it to; that the simple words "I forgive you" would easily take away the pain, bitterness, regrets, hatred, and pent up feelings that fester in a wound that just won't heal. So last weekend, while my husband seemed a little on the irrational side, and I was at my breaking point with "You might be poisoning my night time meds in order to kill me"; I looked at him squarely in the eye and told him "I forgive you".  I forgave him for taking away my life. I forgave him for making our family miserable. I forgave him for all the hurtful words, the verbal assaults he gave me, the drinking, the cheating, the lying and most of all....I forgave him for disappointing and letting me down. I forgave him for robbing any happiness that may come to our family. I forgave him for hating himself so much, that he can't even allow people to love and help him.

As soon as I said it, he looked confused and taken back. He couldn't reply to any of what I said. He just looked at me with his empty, soulless eyes, and said "ok?". I simply woke up that Saturday morning and decided I wasn't going to fight anymore. I am not going to worry about how he is destroying himself. I will not yell, scream or get into a useless, never ending argument that always leaves me walking away with tears soaking my face and my head hung low. I don't know what made me wake up and have a self discovery, but for once, I just got so tired of walking on the edge and so very very weary of battling this on my own. He isn't even trying at all. I realized for the first time on our Wedding Anniversary, that my husband just didn't care enough to fight for us at all.

I felt free. I felt overwhelmingly empty of all of it. I took a deep  breathe and actually felt the release. I made myself a promise that I would never look back again. I felt like I had finally had peace. I was thinking to myself while smiling, that hey, maybe that self-help quack really knows what the hell he is talking about. I firmly believed in what I told my husband. I meant what I said, and I truly just let it all go. There would be no more go-to Rolodex of wrong doings in my memories, tucked away for future battles leaving me unarmed for any war that the PTSD beast could bring upon me. I threw down the white flag saying I let him win. If he wants to fight, I will take the kids and go. I will not engage in an argument, I will not tolerate name calling on his part, or blaming me for something I had nothing to do with. I accepted what was done is done, and there is no going back. All those nights and days wasted, can't be changed nor can they be made up. I told him he would have to find another goat to lay all his troubles on.

I thought I was free.

I laughed this week. Shared conversations with my good friend Brannan at Family of a Vet, who always just knows how it is and has the soothing voice and knowledge to make me realize I am not to blame. She doesn't have the answers either, just like me. In her own world, she has so much on her but never fails to tell me to call anytime no matter what. She is someone I love dearly, respect in the highest manner and damn, am I so proud of her. Her cup, plate and bowls are completely running over and yet, here she is telling me its ok. I have to say, that if I didn't have that woman in my corner, wiping my brow after a boxing match...I am not sure what I would do. I thought yesterday after talking with her, that its been going on six years since I stumbled upon her site when it was the only one out there for PTSD and TBI. I sat and made plans to try and promote her site by volunteering at a few events, hoping to give myself some purpose. To help her to help others while repaying in my own way all the cheering she did from the stands, and giving us wives the courage to keep going. I decided just because my husband hated the world and wanted to punish himself, didn't mean that my children and I had to do the same.

The one thing that bothered me after a four hour talk with him, was that never once did he say "I forgive you". I have never lied to my husband, never let him down, spent or snuck a dime of his money without asking for it or discussing it, never cheated, never been where I wasn't supposed to be. I have always been there for him so I have the most to be upset about. All I can think of now, is that he is angry at me over one burned, twelve year old damned meatloaf, an argument three years ago that he was so nasty and terrifying that I told him we needed to separate, and everything else? All in his head with a combination of his irrational thinking, his paranoia and things he watches on television. Day before yesterday? It was because of cauliflower in a pot of homemade vegetable soup. For years, made the same way, maybe some different vegetables. For whatever reason, this set him off. I will never eat cauliflower again. This morning, I may decide not to even cook for a while.

Since my last blog, it has been somewhat tolerable, albeit up and downs in mood with him. I ignored the downs, blocking out my ears with music which I think irritated him because I didn't let him upset me. I reminded him once more, that as of last weekend...that was it for me. White flag thrown remember? One minute he is laughing, kidding around with the children, cracking jokes even at my expense, and just chit chatty. Another minute, he is obsessed with his smart phone, a fishing rod, the latest news about something in a foreign country and other weird things. When he is in a good mood...I really just want to waller in it like a pig in slop. I want to be happy, overjoyed in the mud of normalcy and laughter because God knows I crave it so much. Yet the past few months have been extremely difficult for us and the good moods? They give me the creeps. They worry me. Why I don't know...I just can't seem to enjoy any of it. I want to so badly, but I can't help that uneasiness creeping up my brain and wondering what the hell has he done now? I end up angry because before I know it, here comes the bad and dammit...I should have enjoyed the moment. They come so few and far between these days. There is no safe place to make me happy anywhere. I think in fairness to myself though, its because its easier to set up defenses than it is to relax and get hurt. I hate that I have become so suspicious and can't enjoy the "few and far betweens". In all fairness though, if it weren't for all of his past behaviors and the damage he caused and still causes...what else am I supposed to believe?

We as family members spend so much time giving it all up to take care of our Veterans. When they speak about the National Debt, the costs of the war, the costs of lives given, no one ever mentions this part of it. Wonder if somewhere on the latest report do they average in how many families are falling apart. Is the cost of therapy for our spouses, family members and children on there somewhere? Do they average out a 3 year old's next 15 years of possible issues? Probably not. Our Veterans don't care or acknowledge how much we give up or how hard we work. They don't care as long as they can keep everyone just as miserable as they are. It can be something so small, or something really important to us and they just rip it away taking it all.

We learn day to day to cope with what we are handed, not knowing from one minute to the next, what the next hour will bring. We learn to minimize our feelings to the point that they are numb and we no longer can feel happiness, joy or to be honest with you....really give a shit anymore. We play the game daily, carefully choosing our pawns to wager against that of our opponent. Sometimes we deal with a strategic move, thinking it through and carefully choosing where to move. The next? We simply close our eyes, take a breath and hope like hell it works while we make our move. We give up what we love, what makes us happy to prevent an argument. We silence our selves so it doesn't upset them because that leads to an argument. It's easier to give up than to deal with so much crap because we fight to hang on to those things. We dance to the symphony of the moods, not understanding where one foot leads to the next, and before you know it.....we are left clumsy, stumbling and leading our partner and family without direction.  After the song has ended, you see his hand slip from yours easily like sand falling through your hands.

I have no direction anymore. I can no longer dance the dance because dammit, the music ended a long time ago. I wonder every day, why am I chosen for all the blame? I used to make myself stronger, believing that the old part of him trusted me and the PTSD beast knows its ok to take it out all on me. Now my armor is wearing thin. My heart is broken in pieces and scattered from the hurtful words he attacked me with. My forgiveness I gave, suddenly all came rushing back and I realized...I don't believe forgiving will always mean forgetting. It amazes me he can throw up in my face ONE burned meatloaf twelve years ago when we first got together, but can't remember other daily tasks. I thought I could forgive and make my mind believe I had forgotten. It's hard when you have someone throwing up tiny, non-monumental, normal screw ups by someone who has done nothing but screw up and doesn't care how it hurts. I really want to say "Hi Kettle, this is pot calling". I thought and hoped I could make myself believe that it didn't hurt every day.

So how does one truly forgive and forget? I don't know if there is a true answer or a correct one. I keep trying. God knows I do. The asinine thing in all of this rambling? I do love him. He still makes my knees go weak. I still see from time to time, my old husband. I thought if I held on tight and didn't let him go, he would eventually be able to stand on his own again.  I wish I could make him turn around and look at me like he did once upon a time. I still every day, keep asking "what have I done that was so wrong?" and trying to debate my moves the past five years.

We are now going in our sixth year of him being home, and he is just getting worse. I've grown weary of it all and still after my mini revelation of forgiveness, I can't forget. I wish I could...I really do. How do you do that when someone is constantly reminding you of their wrong doings? Second chances turn to 30 more, never looking back turns to always watching over your shoulder, being alone is terrifying because you are scared to break down, and loving someone you can't figure out, loves you or not...all will just about drive you insane. I bet that is not on the bottom line of the governments war debt or even on the list of "Maybe we will give a shit later".

I'm not giving up. I have fought too long and come too far, a bulk of it on my own. I just feel like I am torn and confused. I don't know what to do anymore, hold no more aces in my back pocket, and most of all....scared that this will be the rest of my life.

I Still Forgave,