Boundaries.....or Why I'm a Bitch

I've talked in other posts about how being a caregiver is isolating. There are reasons for this, people. Many, many reasons. My life (oy vey, right?), my life is a series of balancing acts and carefully constructed formulas that make up this elaborate structure of string and duct tape. And on this string and duct tape is me, walking a tightrope. Of string. And duct tape. Did you catch that part? I'm making a point here. Some days, that tightrope stretches into endless miles. Rickety, rickety miles. 

Now, let me take a brief interlude from my obviously fascinating story of string and duct tape to make another point. Life with my husband can be challenging. Life with me can be challenging. I am, in no way, burdened by him or his disabilities. In fact, our lives are pretty fucking awesome, aside from my string and duct tape balancing act. I am not a martyr for being a caregiver to him, I'm just....well....being a partner. Like you do. I have many feels for this man and he feels back. I kind of love the jerk. His disabilities can make navigating life different and sometimes, challenging, but it doesn't mean we have a bad life. I suppose this is a subject for another post, though, right? 

Okay, away from all the feels. Gross. Go take a shower now, you're covered in sticky feelings. 

Back? Alright.

So. String and duct tape. We construct our lives to make things as easy as possible for us, for our kids, and for well, everyone, really. I don't start my day with a plan, I just make this shit up as I go. One of the constructs of our lives lies in our interaction with other people. Here's where it gets really tricky, guys. People are well, people and they have feels and thoughts, too. Novel idea. I'm a right genius. HOWEVER, some (okay, a lot) of these feels and ideas don't always mesh with our feels and ideas. That's not always people's fault. Some of it is this insular kind of attitude that we've had to adopt for self-preservation. 

Along the way, I've come to the conclusion that I only have so many pieces of me that I can distribute to the general population. The biggest part of me is reserved for family only. Sorry. Anyway, that piece is pretty damn big. Like Australia and Ron Jeremy big. When we talk about math, which I hate, that doesn't leave much left. So, then, I need a piece for school, because I am trying to better myself, or something. I need a piece for my dogs, because really, they are family, but a smaller part of family. I, probably, need a piece in there for myself. Not always a high priority, but I try. See how the pieces are dwindling? Not much left. 

So, let's talk about family. Family is my husband, my kids, and the group of folks that aren't blood-related, but might as well be. There are people who are blood related, who will never fold into this equation and who will never have a piece of me, well, us. 

That's where boundaries come in. See that segue-way? I'm clever, right? My boundaries are marked by bright yellow caution tape, folks. Now, in the past, they were like a weak sharpie. Like one of those that's sat in the sun all day? That kind. I sucked at making those fuckers and, as a natural result, I burnt out. In a flaming, glittering, spectacular way. I overextended my pieces. You can only recycle them so many times, doncha know. I gave. A lot. And my boundaries faded more and more, as crappy sharpie does when it's walked on. My pieces? They shattered. I had nothing to give to my family, my friends or myself. So, after I cried, wailed, and pounded my fists on the pavement in a glorious tantrum, I broke out the caution tape. 

I tucked my trust way the fuck up inside of me. Much like when a porn star loses a butt plug, that shit doesn't come out without surgical intervention. Now, I approach with small steps. My pieces stay in the places they're designated until I'm ready to call one in and hand it out and when it comes to the welfare of my family? I'm a bitch. It's okay. You can say it. I'm okay with it. I hold tightly to the very little control I have in our lives and I don't give it up. 

You see, I had to come to terms with the fact that I can't control when my husband gets sick and I can't fix it, either. His disabilities are life limiting and they're progressive. What this means for the future, I don't really know. I know that I'll, very likely, outlive him. I know that his mobility issues will worsen and he'll probably need a wheelchair, at some point. I know that his brain injury will get worse and he, and I, will lose more and more pieces of his personality and his memories. I can't control all of that. I can control how we live now. I can choose to be happy and to soak up all the time I can, now. Part of being happy? Is not trying to make people fit in our lives that don't. 

So. Am I a bitch? Yes. I am. I'm extremely difficult to get to know and to have as a friend. I drop out of people's lives and pop back in, randomly. Mostly because there are just times when I need to unplug and to focus singularly on my family and me. I don't trust very easily. Which, sucks for a lot of people who love me. I'm sorry, but know that I'll get there. Someday. 

My boundaries, man. They're an asshole. 

The Night we Almost Lost Each Other...... *Triggers*

Well, I haven't written anything in.....forever. Tonight, though, I feel compelled to put some things into words and to explain a difficult time in mine and my husband's life. Be warned, my friends, it's gritty and there are triggers ahead.

You see, I always refer to PTSD as a monkey on your back. A mischievous damn monkey that pokes its head up at the most inconvenient times. I think it's more than that, though. I think it's more like an albatross. PTSD comes into your life and it completely rearranges it. It forces you to a new normal, which is the catch phrase that we all throw around, but really what is normal?

My husband and I have an amazing relationship. We've fought hard for this amazing relationship. Through everything, we never lost sight of the love we have for each other or the dedication that we have to maintaining our relationship. BUT, it's not always been easy. In fact, I'd say that's a gross understatement. We've both fought our demons. We both keep fighting them.

There was a time, about three years ago now, when those demons just about won. Our relationship was shit. We were barely talking. We would pass each other in the hall and do our best not to touch each other with a barely murmured "excuse me". We were strangers existing in our own, fucked up worlds. We were both still in there, though and desperately wanting to connect, without the will or the skills to do it. We were tired. Everything felt like too much and we both tried to shoulder it alone.

This all came to a head one night. A night that I don't think either one of us will forget anytime soon. It started with a dog. A dog that hurt one of my kids. It was a scratch and it was deep and it was enough to trigger my husband in a big way. He was angry and he yelled at me. Instead of backing down, I yelled back. I'm just that kind of person. It escalated in a big way. In that moment, we had both lost control of everything and who we were. We were in each other's faces, yelling every hurtful thing we could think of. We flung that mud deep and wide. We tore each other apart.

Let me explain something here, I'm not a wilting flower and I have never, not once, ever experienced a moment of fear with my husband. He has always respected my boundaries and stayed in control. That night was different.

That night, I looked into his eyes and saw distance. I saw clouds of Iraqi dust, I saw days of living in terror, I saw a broken warrior. He reacted and punched a wall next to my head. The closest he has ever come to striking me, and then stormed out of the house. I sat in the house after he left. In the dark. I remembered that look. I knew that I was losing him.

In that moment, I had to make a decision. You see, I know him. I knew that he was hating himself. I knew that he wasn't there with us. I knew that he was back in those dusty moments. Dirt on his boots, sand in his eyes, and vigilance in his heart. I knew that if I let him go, in that moment, I would lose him forever. He would take his life.

Whew, okay, this isn't easy to write or to relive. Hang in there with me, though, there is good to all of this.

I was at that point where I had to decide what to do. Were my kids and I safe in the house with him? Should I take us to a shelter? I called the Veteran's Crisis line, I lined my ducks in a row, I got the resources I needed together for me and my kids, and then I decided to deal with him.

If anything, this moment showed to me, more than ever, that things needed to change. WE needed to change. Instead of letting our demons run the show, we needed to grab them by the balls and run the damn show.

I called him.

His voice was full of doubt. It was clogged with tears. I could hear the self-recrimination. He still wasn't in control.

This, aside from his physical health issues, has been the closest I've ever been to losing him.

We couldn't let that damn monkey win.

He came home. We talked. We cried. We made decisions.

That night. That night was the restart of the rest of our lives.

We both took positive steps towards healing. We recommitted ourselves to our relationship and to our love. It sounds cheesy and trite, I know. There really is no other way to explain it. We had been beaten and brought to our lowest, though and we were ready to find the other side.

The proceeding years were challenging. We both had to find new ways to reconnect. We also had to find ways to maneuver around the triggers in our life. We started talking, instead of yelling. We started touching, instead of avoiding. We began again.

Now, not everything is all rainbows and unicorns. But, it's a hell of a lot easier when we're facing this together, instead of apart. We are more than husband and wife. He's my best friend (shut up), my partner in crime, my lover, and my life.

Instead of losing him forever, I found him and good God, I'm keeping him.

We're all in this shit together

We're in this together, man. In life, yes, but I speak to a less broad audience. Caregivers of people with living with PTSD. Veterans, more specifically. 

I sat in on a telephone conference today that centered on caregivers and their needs. It was called the "Forgotten Me". Now. I'm not going to criticize the fact that those who put on this conference were trying to accomplish something good. BUT. It sucked. It focused on breathing exercises and how to identify when you're stressed. Bitch, please. One universal fact of being a caregiver is stress. It just is. That's why caregiver burnout is a real and sometimes, damaging thing. While I can see the appeal is stopping to take a deep breath, breathing exercises are not going to heal my stress or eliminate my worry.  I suffer from "doitall syndrome". By that I mean I take it all on and I have this wild and arrogant view that I can DO IT ALL without any help. I mean, I'm superwoman after all, right? Haha. 

I can't do it all and when it falls apart is when I inevitably lose my shit. At least I'm consistent. 

Okay, so back on topic. During this conference there was a portion at the end where the individuals participating could talk and give feedback. As you can imagine, it was a lot of "well, I was SO impressed with the breathing techniques" and the like. However. There was one voice that was more vocal than the others. She spoke about being alone. It happens. I've talked about it. A lot. She also spoke about not having support. Again. VERY common. But, towards the end of the session, she came in swinging. She blasted post-9/11 veterans and caregivers. She went on and on about the WWII veterans and their lack of support and the Vietnam veterans. 

Now. She had a point. 

There is a divide between the older sect of veterans and the new. There just is. There shouldn't be. Veterans are Veterans. Brothers in arms. 

The system has failed our veterans in more ways than one. PTSD and TBIs are just now being fully examined. It's not a new occurrence, although the prevalence is higher than  in the past. I can see where the bitterness comes from. It should be directed towards the right people, though. Other veterans and caregivers are not the problem. We should be here to hold each other up and to commiserate together. The system is the problem. It's been broken for a long time. 

The good new is, we can work to fix it. There are advocates working to do that, right now. There are organizations working to right the wrongs. There are individuals who are there. There are people who care and dare I say, love. We can work together. Like I said, we're in this shit together. 

Partners and Family: The unheard voices

The other night, I read an article from CNN about the high suicide rates among family and partners of veterans with PTSD. A lot in the article spoke to my experiences. Now, here's the thing, the experiences that me and my family have had are NOT a reflection on my husband, as a person. I think it's easy to fall into blaming mode and look at the negatives, but, for me, I refuse to go down this road. My husband's fight with PTSD is not his alone and it does affect our family, BUT, we are a stronger family because of it.

However, I know that this is not a universal truth. Families are torn apart by PTSD and lives are lost. The statistics say that 22 veterans a day commit suicide because of PTSD and we are just now examining the numbers related to family member deaths. So far, they are astronomical. When PTSD enters our lives, it takes it over. It changes our loved ones into a different person and it makes them say or do things that they would never have done before.

When you read my writings, you'll notice that I refer to PTSD as a separate entity. For me, I've chosen to see it this way. My husband does not embody his PTSD, he lives with it. PTSD does not define him and it does not define my family. It has forced us to "a new normal", but in other ways, it has forced us closer. Communication has become the central of our existence. "Do you need to talk?" is an often heard question in our house.

But, I digress. Back to my original topic. We, as family of those dealing with PTSD are not super heroes. I get commended a lot for how I support my husband, but it's not worth of praise, in my opinion. I am just a partner. I am supporting him the best way I know how and I often fail. We, as family, are also not martyrs. We have our own thoughts, our own feelings and our own imperfections. It's easy to make PTSD the central focus of your lives when it enters a home. It's easy to ignore your own needs and your own feelings in the interest of healing. BUT, and this is important: PTSD never goes away. There is no cure. There is managing and there is time, but there is no absolute solution.

This truth makes it ever so much more important that, as support, your needs are met. You cannot do everything and you cannot fix everything. All you can do is minimize the damage. It is entirely acceptable to step back and say "I can't do this". It is entirely acceptable to say "I need a break" and it is entirely acceptable to NOT accept responsibility for everything.

Believe me, I have to remind myself of these things daily. I love my husband with everything that I have. I love him as he was and as he is. PTSD is not the central theme in our house. Love is. We are not perfect. No one is. I'm not coming to this post from a place of "haha, I'm doing this so much better than you", because, well, I'm not. I have struggled with intrusive thoughts and I am being treated for depression.

The good thing is, it gets better. YOU are important. YOU are worthy and YOU need to care for YOU before anyone else. There are resources. There is help. There are others. Sometimes your best resource is the person who has been there and understands your challenges. Step up. Speak out and demand to be heard. You deserve it.

Disillusionment

Tonight's post is brought to you by the letter "D". For disappointment. And for disillusionment.

Let me explain.

My husband....yep, him again..... was part of one of the most vaunted establishments in our country. The United States military.

Here is where I'm going to pause and warn you all that this is going to be bitter and it's going to be sad and it will probably offend someone. I'm okay with all of this, though. Bitterness, sadness and being offensive all falls under the heading of "allowable" emotions when dealing with what life has thrown our way. So. Sorry, those of you I offend, but this is real life and real life is messy and offensive.

Back to what I was saying. The United States military. You hear those words and for so many people, it brings to mind honor and courage and well..... commitment. Heard that before? For me, it brings bitterness and anger.

I'll tell you why.

Because, to the military, my husband and his brothers were and continue to be, disposable. They took a strong, young man who had so much promise and wrung every bit of usefulness out of him that they could. Which, I get it. That's the way it works. BUT. The kicker? They used him, wrung him out and then abdicated  all responsibility that they had towards him.

Disappointment.

In this process, we start questioning more and more what that damn honor that comes from serving looks like and well, it's not what it was presented to be. My husband, literally, risked his life for this honor and ideal. He sacrificed years of his life, because, let's face it, disability takes it's toll on a body and he has yet to gain this status. At least in the eyes of our government. He is my hero and my children's hero and he will always be. He fought a war that well.... he shouldn't of.

Disillusionment.

This, folks, this is the dirty secret of war. This is the elephant in the room of veterans. It hovers, man.

It's rarely discussed. There are reasons for this, of course. How can you embrace the fact that you wasted your life for someone else's dirty games? How long can you sit and contemplate this before you break?

So, it stays rarely talked about, but it's always there. I walk into the VA hospitals and Vet centers and I see the defeat in our fallen warriors eyes. I see it everyday sitting next to me.

You should be ashamed, America.

Love in the face of war

Well, I blog a lot about our struggles, because, well, we struggle. Mental illness is not all it's cracked up to be, folks. Even with all the struggles, though, there is so much good.

I tend to focus on the negatives. It's a personality flaw of mine, I suppose. I do it to protect myself, but in protecting myself, I sabotage myself. It's a vicious circle, I know. So, today, instead of nurturing the negatives, I thought I'd look on the brighter side of life.

My husband and I are about to celebrate our 11th wedding anniversary. Which, is, incredible. We've been through a lot, my friends, and that is oversimplifying in the extreme. We've, literally, been through a war and we keep fighting that war every day. Even though we have been drug through hell and back, our marriage has been strong and steady. It's been the one constant in my life for these past 11 years.

My husband has been my rock and my inspiration and he's been my world. He's encouraged me, in so many ways, to be who I really am and not who other people want me to be. And through it all, through the very dark times and through the war, he's showed me love. Lots and lots of love. I can't say that I would be the person I am today without him.

All of this seems trite and cliche. It seems like a sentimental rant, I get it. What I need for people to understand, though, is that even through all of my husband's problems and through his internal war, he can still step outside of himself enough to show me what I mean to him.

So, I mean, 11 years. It's an accomplishment. It's a huge milestone. And every day, every hour, every second of those 11 years has been precious to me.

One day at a time.....

How does that saying go..... the best laid plans of mice and men?

I can relate. It seems like, in PTSD land (which, believe me, is not as fun as it may seem), things never go the way that you want or the way that you plan. Things can be going so great, so well one week and the next, it's just not. It may seem melodramatic, but it's the way that it goes. "One day at a time" is the motto du jour. We cling to the motto. It's silly, but that one phrase brings comfort. It's like throwing a warmed blanket over a chilled body. We have a bad day, a bad week, a fucked up month and we look at each other and one of us utters "one day at a time" and it's like we just released our breath that we didn't realize that we'd been holding. Our lungs fill back up with fresh air and we move on. 

Some days, though....... some days, no matter how much we seek that comfort and fresh air, it's just out of reach. We can feel it brushing our fingertips in a maddening tease, but it stays there, taunting us. That one day  remains elusive. 

So, we get back on the roller coaster and we ride that bucking bitch called PTSD and we grit our teeth and we do what we have to do to get our "one day at a time" clarity. 

That's what fighting for a relationship in the middle of PTSD is like.