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,


  1. thank you for this.. my husband has suffered from ptsd for years and it is a day to day process and patience wears thin after a while.. I really do appreciate you letting us into your home, heart, fears, and honest life thank you for being your veterans advocate because it makes me want to continue to be mine husband's as well..

  2. Hello! I do not know your name but I feel like you are me!

    That is exactly what living with PTSD/TBI is like, it's just nice to know it's not just me or my husband living through this. I never feel like giving up but some days are just HARD.

    thank you so much for your blog! I can relate 100% Please keep writing, I will keep reading.


  3. USM, I start by crying as I read this story and write this comment. I wish that I could or maybe I can write my feelings like this as you do. Maybe I can understand me more in what Iam going threw with my husband. Your story's touch me in so many ways also helps me to look at my life. I'm still co confused with this all but I hope to one day come to a point of being happy.

  4. I came home from an exhausting day at work, only to be immediately "under attack" by my angry husband, who suffered a mild/moderate TBI in Iraq and was later diagnosed with PTSD as well. How I wish I could walk through that door at the end of a long, hard week to an embrace or even kind words. I mourn the man I lost in Iraq and realize he's never coming back. Living with a soldier with a TBI and PTSD is far lonelier than living alone, but people who haven't been in this position, haven't walked in our shoes really and truly have NO idea. Your words on this post make me feel much less alone. You capture every thought, every feeling I have gone through these past two and a half years. Now he has orders for Afghanistan, (yes he's deployable) and I'm left wondering: what/who will come home to me this time?

  5. Crying. Bawling really. Like a baby. Thank you.

  6. I will add:

    It's struggling with the horror of burying every ambition you thought you could share with him.

    It's lying or avoiding telling anyone how you're doing because you don't want to end up making him feel worse.

    It's getting accidentally kicked, punched, or pushed in bed during the nightmares he won't remember in the morning.

    It's balancing the budget while you listen to him drone on and on about his lastest obsession.

    It's biting your tongue as he accuses you of being just as PTSD/TBI as he is and that your ambitions are "obsessions".

    It's him not believing in you when you talk about your hopes and dreams.

    It's allowing his every sexual fantasy and crying when he sleeps because he doesn't even remember what yours are.

    It's feeling obligated to everyone but yourself, and when given the time, you end up catching up on everything else thats a mess.

    It's the humiliation of anyone coming to the house and seeing a million details left undone and they ask "Why don't you have time?"

    It's hating yourself at night for not doing better, not helping him more, and questioning God's power.

    It's letting yourself fall apart so he can keep going.

    It's the guilt of trying to explain to professionals something you can barely understand yourself.

    It's treasuring the happy moments all the more because you know it won't last long.

    It's keeping the dog in his crate for hours because you are afraid he'll kill him.

    It's watching all your systems of organization come tumbling down because you're maintaining his mood.

    It's romantic suicide with an unshakeable sense of fortitude.

    I feel like crying, laughing, screaming, and dying all at the same time. Everyday. No breaks.

  7. As a vet with PTSD / TBI i would like to tell you all, dont give up on us we are trying to get back to you we just lost the way. We love and appreciate everything you do for us. We want so badly to be who we where. I thank god that my wonderful wife has hung in so long. Thanks babe i love you!

  8. CavScout, thank you ... loving/caring for a 19D, that was exactly what I needed to read/hear.

  9. I am the wife of a viet nam vet going on 18 years,I have felt all of these emotions and then some.Cav Scout,you are a very strong man,God bless you and yours,and thank you for your service.I sill ride that roller coaster daily,we'll all pray for one another.Proud wife of p.t.s.d. veteran,But I also needed to hear/read that Today,today was a bad day...Thanks

  10. Thank you so much for sharing your story. My husband also has PTSD/TBI which has resulted in Epelpsy. This past year has been so difficult for me. Knowing that I am not alone is comforting in some way. I pray everyday my husband doesn't give up on himself or his family. Seeing his descent has been so hard. We have two younge children and for them I will fight to the end and never give up. You have inspired me to use writing as an outlet . Thank you and good luck to you and your family.

  11. Thank you. I'm comforted to know that there are others as crazy as I am for taking my vows seriously and being with him in sickness and in health as long as we both shall live. I will add that the worst of it was sitting in the doorway all night countless nights rushing in at the sound of the gun racking back. With medication it does get better but even 5 years later it doesn't go away. Then the fazes of I'm ok I can stop the meds come around and we're back at square one.

  12. Thank you. I'm comforted to know that there are others as crazy as I am for taking my vows seriously and being with him in sickness and in health as long as we both shall live. I will add that the worst of it was sitting in the doorway all night countless nights rushing in at the sound of the gun racking back. With medication it does get better but even 5 years later it doesn't go away. Then the fazes of I'm ok I can stop the meds come around and we're back at square one.

  13. Just so you, I share this post all the time with family and friends and strangers. It is by far, the best post I have read about what it's like to live with a PTSD sufferer and why we do it. Thanks again and again.

  14. Thank you so very much for this post. This is me. This is 100% my life. It helps to know I'm not the only one going through this. Thank you!

  15. My son has PTSD and a TBI from his time in Afghanistan. He, his wife, and my grandchild live several states away so we don't see them even on a monthly basis. However, we are very fortunate to have open lines of communication with each other which are frequently used to promote healing. We try to take the pressure off our daughter-in-law by being available to listen even for hours to his ranting. (I confess to putting my phone on speaker and doing housework at the same time.) I cannot begin to express my profound appreciation, love, and respect for my daughter-in-law who has been through hell with my son, especially when he first came back from deployment. I am not such a patient person as she. Because of the open communication we have and the support system of family (he has 4 siblings and a military brother-in-law) and incredibly supportive work relationships, my son has made tremendous progress in many areas. He also sought out military counselling at all of our insistence/intervention, post deployment, when it wasn't the popular thing to do among his peers. He is open to his parents gently, and not so gently, steering him back to being the civilized person we raised. He is also a very verbal person so little gets stuffed ready to explode at any time, though explosions happen. He still has his demons chasing him, nightmares, etc., but season by season they have less hold and emotional and spiritual healing are occuring. Some of his physical problems are actually worse, but we, as most loved ones, would rather have the person back if we had to choose 1 over the other. He doesn't see how others have much chance at progressing without the kind of support he has. I would like to be able to confidently recommend one find a local church support group, but unless it is specifically a military group you may have the frustrating experience there my son has had. No one seems to understand there except for God, on Whom our family relies. If raising a child takes a village, healing a combat veteran takes one as well. I pray that each one will be able to find that village and not try to make it alone. There is hope and healing available. Jehovah-Rophe (The Lord our healer) bless you all.

  16. You are all such wonderful brave people...
    We Are Going Through a Bad Patch Right Now And Its 2am.. And i cannot sleep.
    Crying reading these.
    Cav scout, Thank you for your input.. it is very encouraging.
    I really feel at the moment i may never hear him say i love you to me ever again..
    I'm realising i must be Patient.
    I Just want to Love Him..
    He feels I have Broken his trust and that he is not sure he will ever trust me again..
    This brakes my heart..

    J xxxx

  17. WOW thank you. I honestly can say that was so honest and I have experienced all those things. 10yrs of my husbands PTSD being debilitating in every sense. Be has been 1yr of functioning at about 70% but with Christmas here he has gone into himself again and it is flipping hard.

    I have the way people are such snobs about mental illness

  18. Thank you for providing such an enlightening and valuable source of information and inspiration! Your post touches on so many of the common yet overlooked experiences of family members whose loved ones have sustained a TBI.

    I find your honesty about how the strength and support you can offer your husband depend on your own energy level and emotions especially moving. At BrainLine, we have some caregiver bloggers who write about similar experiences. One of them is by a woman whose husband is a TBI survivor: http://www.brainline.org/rosemary/

    You may also be interested in our site for service members, veterans, and their families: http://brainlinemilitary.org/ Please feel free to share it with your readers, and thanks so much for including BrainLine under “Military - TBI” in your links!

  19. Here's a poem I wrote about 12 years ago. I'm a 63 year old Vietnam Vet (Australian) with PTSD and I'll have it until I die. I sympathise with you ladies and admire you for your fortitude. Was nothing learned from Vietnam??

    If he stays home alone,
    And doesn't like to hear the phone.
    If he won't answer the door,
    'cause he doesn't want to see anyone any more.

    Try to understand...

    If nightime is something to dread,
    And his sleep is restless and fleeting in bed.
    If he quietly gets up in the night,
    So as not to disturb your pleasant respite.

    Try to understand...

    If he becomes nervous and jumps around,
    At unexpected movement or a sudden sound.
    If he sits in a restaurant with his back to a wall,
    Because he can't have anyone behind him at all.

    Try to understand...

    If he shows no fear and wouldn't turn if he could,
    That part of him has gone that says you should.
    If his anger seems quick and extreme,
    He's only trying to control intense emotions unseen.

    Try to understand...

    If he seems emotionless and indifferent some day,
    And perhaps he just says "Go away!"
    If he becomes depressed and may seem unkind,
    He is only trying to spare you the agony in his mind.

    Try to understand...

    If his mood changes and alters,
    And he becomes unsure and often falters.
    If he becomes sad and stares into space,
    He has only gone to some other place.

    Try to understand...
    Because he doesn't...

  20. As a PS to my last post (Viet Vet), I thought that I'd let you al know that it is not all hopelessness. I have had many problems from PTSD (and still do) including jail and run ins with the police, but I am still happily married to my wife of 40 years, I have two wonderful daughters and 3 grandchildren. Life is still an everyday struggle, but I have learned to live with PTSD. It never goes away, but one can come to terms with it and live within the constraints it makes on life.

    I hope you all find peace.

  21. Your posts bring me to tears I am proud of both of you for keeping it together when it is not easy I commend you for your strength!!! I have a complicated situation I am starting to fall for a guy who had done 3 tours one in Iraq and 2 in Afghanistan he was injured on his last tour and came home with a TBI.....that was almost three years ago from the conversations we have had....I try to read everything I can on TBI and PTSD to understand it better I try to tell myself he will have ups and downs he will text me and say we will meet after his shift at work it falls thru or he forgets....which I totally am understanding of I am afraid that I am overwhelming him I want to be a part of his life but at the same time I try to distance myself for fear of hurting him or myself if it does not work out......its like u have said its like living with a human yoyo almost....one minute he is present and its all about us and he wants to spend time together and be intimate other times its like I don't exist.... I want to laugh scream and cry some days....any guidance u can give would be great I am going to read through more of your posts too:-) God Bless you and you and your family are in my prayers!!!!!

  22. I am a 30 year old OIF Army vet with PTSD. Living in a halfway house/ VA long term care housing in Indianapolis. I left home cause all I did is hurt the only people I care about. I have pushed and scared everyone who has ever cared about me. I am anger all the time. I don't sleep and when I do I have nightmares an panic attacks. I can't manage my own money anymore and have been homeless twice. I HATE the person I have become. Most days I wish I had died in Iraq, or wish I was never born. Most days I can't find the willpower to get out of bed . I am a shut in now. I have come to terms I will never have a family of my own no wife no kids. I will never be able to have someone to share my life with. I truly wish I could be someone else. I can't hold down a job. I have panic attacks daily. I think about ending it all a lot just to save the people around me the trouble of having to deal with me. I have tried to kill my self more than once. And wish I had a woman in my life that stuck by me like you ladies have done for your men. God bless you all

  23. Hi to all, how is the whole thing, I think every one is
    getting more from this site, and your views are pleasant in favor of new users.

    my weblog - air conditioning problems


I Would Love to Hear From Ya'll!