Wednesday, May 22, 2013

Outsiders, Insiders and The Harsh Reality Of It All

A few days ago, I received a few emails and one comment I published in regards to my last post. The comment stated "And, PTSD or not, no one should ever be treated like a non-entity or made to feel worthless! I think you definitely need to start thinking about doing what's best for YOU now. I'm glad you've had these times in Las Vegas and NYC in recent months-- but it feels as if your happiest moments (your only truly happy moments!) are when you are WITHOUT your husband. While I admire your conviction, sticking with him for so long, I also hope you can be happy yourself. And it may not be possible, if you are still playing caretaker to someone who, deep down, doesn't even appreciate your worth. No matter what you decide, though, I wish you the best". It was a good comment and I appreciate this person's open and honest opinion. "Playing Caretaker" was sort of unfair when what I am is a caregiver providing a service that an otherwise disabled Veteran would be unable to do. Another email stated "I don't know why you put up with all his shit then whine about it in a blog for others to see. PTSD is just an excuse, trust me I know from my first ex who was a Gulf War Vet. You aren't being supportive to other families or wives when you don't show positivity. My husband (now) has cancer but, that's a medical condition and I wouldn't leave him because that's different. I write but I show God's plan and ways to reach others in a positive manner. PTSD is just a bullshit way of saying I served but, I am now lazy".


So in between the painters, the kids and my husband's up and down moods; I focused on these two particular comments to keep myself mentally busy and really think about what they said.  When I started this blog, I wanted it to be a place where I could say what I wanted, say what or how I felt at the time of my writing, and share our family's story in the nitty gritty. Whether positive influence or not, sometimes that's just not the way life is in some of our cases. I won't make blanket statements because there are many who are showing improvements. Sure, I could say a lot of things positive and never really talk about the bad stuff. However, I feel this is where some are going wrong and in the process, losing soooo many others out there who are afraid to speak up, not understanding what's going on or maybe even just feeling alone. There are times where I focus on things that I am going through that day or an issue I am trying to work out in my head. Doesn't mean there aren't any positives that happen at all, they are just slim. That's the point of this blog. There are many blogs where I have pointed out encouraging things, sweet little things he has done, hope, gains and losses. I bared it all. It is the most difficult life to live especially when the outsiders don't "get it" and you no longer fit in. The "insiders" (meaning family and relatives/friends) are struggling to understand and cope. Sure I could spin some positivity on a whole lot of things but, would that really be the God's honest truth?

I don't get the chance to write everything out. I wish I could. After thinking about the first comment, perhaps I need to include more positive things that my husband does. Not out of defense because of the comment but, because the comment made me think that perhaps I was being unfair by just concentrating on my own feelings and point of view. The negative things I write it all out, and then cut it loose like a balloon. This is my therapy and a way for me to express what so many others are thinking or going through. It is a way to make me happy and have the ability to read and find answers within my own questions. Sometimes I think by not having that bouncing board in my husband may lead me to think I have no self worth. Or maybe his lack of attention and his distance, makes me feel less of a person. I am working on that. I do agree though that maybe I am wrong by not stating "Hey, he made it to the VA and back without getting into a pissing match with someone". Sometimes when I can't talk things out in my head or with anyone, I focus that on my writing. I try to be open but, I haven't really been fair to my husband and need to say some more of the little things. So for instance, this Mother's Day was my first holiday that he really tried. It was the best one EVER and the nicest since he has been home. He made a big to do on the invite to my favorite restaurant. Wouldn't let me order because he knew what I wanted, ordered for me and we talked for a long time. Since we are working together on our home and starting over fresh, all while agreeing that each thing we do; we cut some emotional baggage loose in the process. Our new motto with my entire family currently is "LET IT GO". We spent four hours in Home Depot getting ideas, choosing tile and just shooting the crap. I forgot to blog and with no internet until this morning, it's kind of hard to get on here all the time.

Yes, I have, like most military born children...the "wander lust" when it comes to travel. New smells, things, sights, the whole nine yards. Am I happy for that break? Hell yes! Do I feel happier when I am alone? Yes and no. Yes, I need the break and a change from the same old thing day after day. Does it mean that I don't wish my husband with me there? No. I called my husband every step of the way and sent pictures by phone. He said he wanted me to have this break and be happy but, I missed him every single step I took. I don't know sometimes honestly (to the person who left the first comment on the blog) whether it's just coming home to him, or if it's coming home to stress, worries, Army paperwork, and the same routine over and over. Conviction in staying with him is my decision because I do see some light at the end of the tunnel on some days, we have good times albeit rare but, there are things I couldn't walk away from with him. I didn't think that comment was fair but then perhaps, maybe I am not being fair in my writing so I am glad this was said. There is a difference between conviction and wanting to move forward and change the same old routine up just a bit.

On the other, I am really very very sorry to hear your husband has cancer. I will keep your family in my prayers along with many others. I am not going to get into a pissing contest over who has it worse than others, because to me that's like comparing taxi cabs to airplanes. It just can't be done. PTSD I do believe you need to educate yourself on and maybe understand some more. Then you have to add in the Traumatic Brain Injury before you start throwing the first stones. I have been around some patients with medical conditions that ended up killing them. My mother's untimely death was due to cancer. Towards the last six months? She called me every name in the book, cussed like a sailor, and was so mean that I swear that wasn't my mom. She was angry. Not ready to let go. Didn't want to accept this was it. I didn't get to hear "I love you, or I know you are going to be ok and it's my time to go". Nope. In some ways, I see my mother in my husband some days. I didn't leave her then, so how is this any different? My husband is not willing to accept, let go and understand that this is our life. Brain and Spinal Cord Injury specialists explain that he is not able to accept it because his brain is in just one set mode. That portion I must come to terms with. I don't understand why outsiders think that TBI and PTSD is not an illness/injury and the first thing they say is "leave him/her".  So you are saying sticking with it  should only be reserved for those in other circumstances? So I am not positive enough, not giving the people who live our lives enough positivity, I get it. But, if I left my husband with cancer, everyone would be horrified. If he had a heart attack...God forbid. With this....this is one of the most common statements we ALL hear when living with PTSD and TBI.

I feel damned if I do and damned if I don't here on this subject which is why I am writing this one out. If I share my experiences, positive or not, people think I am just trying to become a martyr and putting myself in a precarious situation. "I need to leave and get out before it sucks me in". I got sucked in a long time ago but, there are a lot of things I don't write about like setting boundaries with my husband. He doesn't acknowledge me but, he doesn't acknowledge anyone else either. His sensitivity or lack of, is not just towards's pretty much towards everyone. It's not for lack of effort, it's just the way his brain now works and because no one did anything about it? The specialist said that he will continue to be this way and get worse. There is no implants, no chemo, no radiation, no magic pills to take it away. Why do any of us stay with this?

Because we still hold on to hope that the war will end at home and they will come home.
Because like you, you have hope they will get better. 

Silly notion.


Still... hope is what keeps us alive and we see those sparks like suddenly out of nowhere wrapping his arms around you. Or on a good day, filling my head with stories and funny comments. There are days where I don't want to move because I am afraid it will take away that single moment, that I will loose that one bright flicker I have at that very moment; a single glimpse standing still in time. It's not conviction, it's love. It's hope. It's fighting for what we believe in and I have three boys who look to me for so much more than just being mom. That few minutes? Makes it worth it. Reality setting in these last couple of days, I think if he wanted to be gone. He would be gone. If he didn't somewhere love me, he would have left a long time ago. Everyone has issues when you live with someone, especially in marriages. I don't think anyone has a "perfect" picture postcard even without any problems hitting their relationship.

Maybe it won't work out. Maybe it's not meant to be. Maybe I am setting myself up to failure but, it doesn't mean I still can't keep trying though and hanging on to hope. Doesn't mean I still can't go for days to see that one smile or hear his laughter. I just need to write more about it and will do so. I won't give up on him but, I also haven't forgotten myself either. This year major changes have been made and I have dug my heels in. This has led to other issues but, it's for my happiness and it's my time. It is also one of the most difficult things to learn how to do in this life now and one I am trying to teach myself. I am moving forward with my children with or without him BUT, I see some sparks coming to the surface and I hope that by leading....he will find his way to follow. If he doesn't? Doesn't mean I can't. I appreciate the comments because it gave me a few good reasons to stop and think about a few things.

There are still parts of us that I don't let all out in the public to see,


  1. Being a caregiver for someone with severe PTSD and a TBI is much like jumping onto a rollercoaster ride in which you have no idea where the turns are coming up and just how far you'll drop before climbing back up again. Just from the past couple of blogs I've read, it sounds very much like you're suffering from caregiver burnout. I know you've also already addressed secondary PTSD and are exhibiting those behaviors as well.

    I applaud you for sticking it out, and being there for your husband. Although I do agree, that regardless of his should never be made to feel like less than a human being, it is such a fine line between understanding and accepting his behaviors...and enabling him. It's a fine line that many don't and never will understand unless you are a caregiver.

    While it would be so easy to just walk around or extract yourself from the situation, you have decided to hang in there and be an advocate for your husband and other caregivers. Only you can decide how much you are willing to take. Your resilience so far has been stretched to its limits and back, and you're still standing! Go on with your bad self!

    It is very difficult for others who are not in your position to full understand why many of us choose to stay and battle it out, for better or worse.

    I'd love to extend my applause to you...but also offer another friendly ear with our program, Operation Family Caregiver. As a caregiver coach, I'm here to help alleviate some of your stress and caregiver burden by serving as that objective person who can help you in problem-solving and stress management. If you're ever interested in asking a few questions about what I can do for you, just email me at I'd love to talk with you. My husband is a veteran as well, suffering from PTSD.

    You're doing what you can, when you can, and to the best of your ability. That's all anyone can ever do :)

  2. Just wanted to speak up and let you know I immensely enjoy reading your writing- and it has been a huge comfort to me in the past when my husband was going through a particularly difficult time with his PTSD. As a caregiver and wife, I think there is a tendency to get so wrapped up in our husband's illnesses that we begin to think that perhaps all this anger, negativity, and rage that is directed at us is our fault. It's nice to be able to relate to someone that understands that confusion, frustration, and heartache. While we try to stay positive in our family, there are some times that quite frankly are not positive. I think to sugar coat that does a huge disservice to others going through this and only serves to alienate others. As for the comment that post traumatic stress disorders is some sort of excuse for laziness, I can assure the person that posted this that is not the case. I have dealt with this for four years now with my husband- and his behavior isn't indicative of someone that is looking for an excuse. His behavior is indicative of someone with an illness, that has hard as it is for my to see at times, is hurting just as much as I am, if not more. Thank you for portraying the reality of post traumatic stress disorder on your blog. It's not all rainbows and butterflies.

  3. My husband is a Marine that served in Iraq & Afghanistan and suffers from PTSD. He came back in April 2012 & since then all we seem to do is fight. He is in NC & I'm in MD so that is a huge stress that adds to everything else's. He is retiring at the end of the year & he will be back here with me but I'm scared. We can barely have a normal conversation. There are days that go by with no calls, texts, emails, etc. I feel like I just add stress when I call or text him so most of the time I just let him be hoping he'll contact me but he doesn't. It always seems to be me, it makes me feel like he just doesn't care anymore. I just found this blog and it is helping some but one main question that I have is how do you keep up the hope? I hope and hope but it seems like I'm always let down. I love him, support him & would do anything for him but I'm so exhausted emotionally form not getting any emotional support for him when I need it as well. Even when I tell him I need it, want it and what to say he just doesn't. He says that all I do is brow-beat him about what he does wrong and that everything is his fault. I just trying to get him to understand what is bothering me, why I'm upset or how he's changed. It's always the same things. He's been seeing a counselor & he admits to having troubles but he doesn't seem to get better. If anything he's gotten worse and I'm getting hopeless, at least I'm at a loss. I just don't know what to do anymore. I'm afraid to talk to him, I'm afraid to be around him because I don't want to fight or have him fly off the handle. He has so much anger & I have asked him to seek anger management but he thinks I'm nuts for thinking that & that he doesn't need it. But he does. I suffer from depression & anxiety myself & I also have a work related injury that has kept me from working for over the past year. This has had led to additional stress & I fell like he doesn't even try to understand what I'm going through,,not only with that but with him & how it affects me & our relationship.
    I don't mean to carry on, but it is helping to get it out like you said in one of your older blogs. I've never posted on a blog before either so forgive me it's new.

  4. There is an evidence-based therapy for PTSD called neurofeedback. Here is a video of a Veteran, who had been suicidal, describing his experience with the modality. He no longer meets the diagnostic criteria for PTSD –

  5. I guess you could say I am a Newbie to this new lifestyle. But a veteran Army Wife. I have been dealing with my husbands PTSD now for 6 months, even though I now realize I have been dealing with it for much longer. I just need to tell you I began reading your blog and many others when I first realized I was loosing my husband. I thought I would prepare myself for what may lie ahead, when and if it would come to that. Well after a stint of him in a hospital and another one on the way I have finally realized this is my life. It is amazing how the words you write I feel are coming from my own mind. How people just do not understand. How know matter what, there is that small glimpse of hope. I know longer hope that he will snap out of it. ( that was my denial of his illness ) I now hope that soon I will have at least a small piece of the man I married 13 years ago back. The man who would do anything for me, who showered me with love and affection. Yes, sometimes I question if I can do this forever, if I even have the strength to do this forever. How could I walk away, he did not ask for this. Your writing truly makes me feel less guilty for these feelings of anger, sadness, and pain. It gives me strength to not fall apart each morning I get up. And most of all it makes me feel so much less alone. For me the positive or negative is irrelevant. As a wife and a caregiver I know from my own life there are positives. But it is the negative that so many people feel guilty or confused about. Therefor they look for someone who feels the same way, support group or a blog. Thank you for your honest words. It is a blessing to know I am not alone.


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