The looping cycle of PTSD and TBI in his battle-zone brain.

My understanding of the dance between Dean's PTSD and TBI is deepening. I've learned a few things this year about how the two injuries affect each other.

PTSD (Post Traumatic Stress Disorder) is a STRESS disorder. Dean's was caused by being in almost constant danger and under surprise attack daily, when someone is trying to kill you and all your battle buddies your body responds with all it's wonderous chemicals to aid you in saving your life! That's our "fight or flight" system. For the average civilian, who also experiences moments of fight or flight, the scenario causing the panic subsides and our brain chemicals normalize and we can find our calmness again. Since Dean's system had to be in overdrive day in and day out for many, many months, his brain chemicals don't know how to properly regulate themselves. Now, when he encounters stressors, his brain floods him with fight or flight even if the stressors aren't ones that could injure you.

Think of the stressors in our everyday lives - we can't find our shoes and we're going to be late, we bump into a corner and spill a bit of our coffee on ourselves, someone calls us while we are eating breakfast and they are upset, we get a bill that we didn't expect and now have to wonder how that will fit into the budget, our child gets hurt and abruptly breaks out in a cry from the other room, etc. These stressors occur to everyone, everyday. They are no big deal really....on the grand scheme of things. Our daily stressors aren't causing us to have to battle some attacker in order to save our life.

When our brain responds to stressors with a flood of chemicals, our body experiences symptoms like racing heartbeat, more blood gets sent to our skin making us flushed and warm and we may even sweat, our brain becomes ultra focused on the threat, we have momentary increased strength and stamina, etc. Think of if you've ever encountered a person in the throws of major stress (a parent who just lost her child in the park, someone who just had a car accident, etc), they are freaking out a bit....breathing fast, confused, very focused on the event that is causing the stress, red, racing heart beat, scrambling around but not having much logic...they are stressed!

Dean's PTSD now causes his brain to respond improperly to small, daily stressors. His body doesn't know the difference and so he gets all the physical symptoms like the ones I mentioned above.

Now let's add a layer that complicates it a bit. When Dean has one of these stressors, say he dribbles coffee onto his shirt, his body floods him with chemicals that cause him to immediately be ready to kill the wall he just bumped. He is PISSED! He tries to realize that it's just coffee, it's easy to clean, it's no big deal, watch how you act....your son is watching....you don't want to scare him....(these are all great skills Dean has that not every warfighter with PTSD has) and then the next layer kicks in. He then gets mad at himself that spilling a little coffee made him that angry. He's mad that people may have seen him freak out over coffee. He gets defensive and just wants everyone to get the fuck away from him, stop looking at him, don't help him, leave him alone and he continues this cycle of "mad at himself" until he can go be by himself to regroup his thoughts and calm his body's symptoms down.

I haven't even mentioned the complexity that the TBI adds yet...so far that's just his PTSD. His stress response is broken and blows little things out of proportion and he has no control over the flood of chemicals his brain decides to dump into his body causing him to just lose his marbles!

His TBI has it's own symptoms.

• He can't process incoming information quickly, kind of like when you are trying to learn some really difficult math and you're in class the first day while the teacher is explaining concepts you don't know yet. 
• He can't respond or communicate quickly, kind of like when you are learning a foreign language and your teacher asks you a question in French and wants you to respond in French back and you have to piece together a sentence with words you don't know how to access. 
• He is often confused because he doesn't live in a whole picture with all the context there for him to understand. This would be like when you first walk up on a scene and don't have a clue what is happening, what just happened, who is involved, etc. There is a confusion taking place while you gather data to paint a whole picture for yourself. He lives without that whole picture because his memories don't stick. He can't really gather the missing data because that's another TBI challenge. He mostly just has to try and function without the whole picture or the memories that he thinks he has are incorrect and he pieces together a picture that is wrong. 
• He can't see, feel, or experience himself accurately. He doesn't know when ate or if he's hungry or that the dizziness he's feeling is because it's been 10 hours since he last ate or that the stomach ache he's feeling is because all he's eaten for the day is sugar cereal. He doesn't realize his eyes are hurting and causing the headache he's getting because the light is too bright and he should put on the sunglasses that are hanging on his shirt. He doesn't know that he feels like he's falling down because he's in a room with stripes on the carpet. He doesn't know that he feels really sick throughout his body because a stressful day is coming up that he doesn't remember. He doesn't know why walking through a room feels like he's walking under 1000 feet of water with the sounds being muffled and him feeling heavy weight all around him and his body is pushing against a resistance he can't see. He has body sensations that he doesn't understand the cause of and just kind of trudges along not being a "complainer" about it but not knowing what is wrong either. 

With all these symptoms of TBI, when we add them to a stressful situation, they get a say too. Sometimes the TBI affects how the stressor begins or happens, sometimes it affects how he responds, sometimes it affects the results or aftermath of the stressor, and sometimes it affects some or all of them randomly.   

I'll give you some examples:

• TBI affecting how the stressor begins: bumping a wall, spilling coffee on his shirt - His TBI is causing him to experience more vertigo this morning so he's feeling clumsy, he doesn't know it's because yesterday we went to the hardware store. Since he's off balance he bumps into a wall and spills his coffee, he gets mad that he's so damn uncoordinated and can't control his own body and that no matter how hard he tries he just can't make it happen! 
• TBI affecting how he responds: he gets a phone call - He feels like he wants to answer the phone and says "hello". The person on the other end begins talking and Dean doesn't know who it is or what they are talking about. He can't figure out what they want or why they are calling. He picks up on a few key words and tries to run them through his memory to see if it pulls up any files to clue him in to the conversation. The person is continuing to talk while Dean is still trying to figure out who it is. Now he needs to interrupt the person and ask them to SLOW DOWN, not to speak so fast, that he has a brain injury and can't keep up with them. He asks them who they are. He realizes this is sister and so instead of getting mad he smiles as now registering her voice with his good memories, he feels love for her and is happy she called. He tries to engage in small talk so that he can keep hearing her voice. He realizes that after 5 minutes of trying to keep up he's very tired and he needs to get off the phone. He thinks of some words to say that can get him off a phone call pretty quickly, like "Well I have to get outside and feed the animals", or "Little Dean needs me so I gotta go". He ends the call happy but tired and his brain hurting. Now he needs to recover with silence for a while.
• TBI affecting the aftermath of a situation: he's watching tv - He's watching some program on the History Channel for a couple hours. He decides that it's time to go out to the shop to get some work done. Later I go out to see how he's doing and he starts talking about some strategy in some battle that was really stupid and it's making him agitated. He doesn't know if it was 10 years ago, 1 year ago, 1 week ago, or 1 hour ago that he watched a program about this but now he's a little preoccupied with the stupidity of some guy in history and how if that one guy had done something different all of history would be changed and on and on. Now that he's agitated he's making more mistakes in the shop, having to redo tasks over and over again because he keeps losing focus. 

Any one of the above examples (or thousands more) causes him stress which then loops into the brain chemical response which loops into the TBI confusion into a cycle that because it affects every facet of his day to day life, the cycle doesn't really end. One loop pours into the next and on and on. Part of what I do is to keep track of what he's doing so I can know what is triggering something or causing something and then I offer explanations which sometimes helps him not feel "crazy". I also try to add in positive stimuli at every turn such as wearing the perfume he likes because that activates a happy, loving feeling in him which can turn a bad moment into a normal moment or cooking him a favorite food or giving him a hug or saying a loving word to him. These little positive things can help his battle-zone brain to have a tie to reality and to the love of his family which is the reason he stays in the battle rather than giving up. 

Another Alive Day Down

This year's Alive Day came and went. SO glad it's over. Sometimes it feels like we've been at this "new life" forever but when it comes to Alive Days we've really only had 5...and they are all so different. This year he started to feel it a month beforehand. Dean doesn't know what day or month it is most of the time but his body was knowing that something was coming. The night before the date was actually here (March 22nd) I had told him about his Alive Day approaching earlier as an explanation to why he was feeling the way he felt and he posted some sort of "Fuck the Taliban" message on his facebook. I guess a part of me felt happy for him that that was the position he was taking. The beer he was drinking was partially responsible for his harshness...but he deserves it! 

Another change this year is that once his Alive Day passed he was fine. No more fog, his new regular energy was back, he could see clear again. 

Alive Day is approaching

Well it's going on about 10 days of Dean in weird funk. He is admittedly feeling very strange everyday, no coordination, wiped out exhausted, can't think right, can't form words, can't even be mad at it (which is strange for him because normally when he's having such trouble I'll hear him cussing from the other room due to his frustration with himself), sleeping more, getting less work done (which makes him mad usually but again he's too wiped out to even be mad).

His "normal" is to operate at a 20% pace compared to a non-injured person and every 3 or 4 days be exhausted, need some more sleep, need to isolate even more, then he's back at it. But for this to be 10 days to 2 weeks of this exhausted state? If you take his normal 20% and make that be HIS 100%, I'd say he's functioning at 20% of his "new normal". This is getting bad.

We both have been trying to figure out...is he getting sick? No. Any med changes? No. Have we been having marital tension or issues with the kids? No. Any stressful events happen or coming up? No. Well......then it dawned on me that March 23rd is his alive day. Maybe this is him beginning to physically feel it coming? I mentioned it to him and he said "Maybe that's why I've been having flashbacks (he didn't even tell me he had been having them)....smelling the shit in the air, tasting the shit in the air, feeling the dirt on me again....".

What is weird is that here we are in our 5th year since his injuries and each alive day has been different. Mostly I feel they are a bigger deal than he does. I don't even think I mentioned it to him last year (or maybe that was the year before)? I don't know if anything will ever really settle in and be predictable. I don't know why I look for it to be predictable? Maybe it's just a natural human inclination.

The Mine Field of the Unpredictable World

Living on the farm there are most days that I think "Wow, he's getting a lot better". Thinking that may give me some peace of mind but it makes me put little expectations on him that end up not being good. Those expectations will lead to me being let down and then frustrated as I ascribe motives to him failing to meet them. But that is all on me. He didn't have anything to do with that whole cycle.

We live a life that is conducive to his highest functioning here on the farm and this is why I sometimes think he's a lot better. I am so thankful for those times that remind me of what he still deals with inside and of the simple things that are so difficult for him.

Our daily routine is basically groundhogs day. That's how he functions best. I try to replicate each day and just slowly add in little improvements as I see necessary. That means life is boring for me but I do it for him. He is a worker in every meaning of the word. He likes to get things done, to feel productive, to build things and better his environment's functioning. He gets tickled at his accomplishments no matter how small and he loves to share them with me. It's his clutch on manhood that he believes is mostly vanished (I disagree). So with his high productivity he has a list of jobs which each have many steps requiring they be done in the proper order and job has a corresponding shopping list. Not a big deal for most people but each day he is unaware of what day it is, of his day's plan, of what he was working on yesterday and what he may need to finish today. He's always in the present moment and requires queues to remember things. He has taught himself to be very methodical and routine with his tasks and even though it means every step takes a lot more time, it's the only way he can get it done. The love for his animals forces him outside each day to feed and water them. He has a relationship with them all and has the funniest stories to share with me about the Days Of Their Lives...lol. Once he's out there then he's in THAT moment, surrounding by his work. Groundhog's day.

It's when I get the text that we need to go to the hardware store that his routine now must take a detour. We must venture out of our groundhog's day and into the mine field of the unpredictable world....turn up the stress and hold on to your seats! These are the experiences though that I'm ultimately thankful for, like I said above, even if they make me incredibly sad at the same time. Sometimes I watch our situation from the eyes of an onlooker. A grown man talking to himself in aisle 6 holding onto parts while he tries to figure out what piece will go where. The man struggles to stand upright and think while his frustration can be seen and felt by those that pass by. He gets angry that they are there invading his aisle! He gets angry at the music coming down from above, at the occasional "Are you finding everything ok"? interruptions, and worries that he's making his wife unhappy to be there. He feels he's failing her because his stupid brain can't do this. He's so defeated yet he knows if he gives up and leaves he'll have to come back because he needs these parts! I try to wander around the store coming back to "feel his vibes" every few minutes. I can feel that he's worried about me so I approach in time to hear his apology. I reassure him that I'm just fine and he can take all the time he needs! I wander some more. If I were to stand there he'd feel more pressure and so I don't want to add to it. When I see that other people are encroaching into his large bubble, I place myself between them so he can calm down a bit. When he finally thinks he has what he needs, we venture to the checkout counter where he'll have to dodge through the checker's gunfire questions. I try to answer where I can, I try to interject the suggestion that he can go out to the car and I can take it from here. Sometimes he takes me up on that but sometimes he just stays and suffers through this last agonizing ascent. When he's successfully passed this exam of answering all the questions without blowing a fuse, getting out the debit card, pushing the right buttons on the pay pad, putting the debit card back in the wallet, gathering his bags, and walking out of the store he lets out a sigh of relief! He relaxes in the car as I take him back to his safe base. Both of us hope we won't have to do that for quite a while!

Inevitably that battle at the hardware store will have taken all his energy for the day and his reserves. He'll be taking it easy and sleeping extra hours for that one. It will take us 2 or 3 days to get back on schedule, back to groundhogs day on the farm, back to him being able to smile and share funny animal stories.

My son deployed

My son has wanted to be a soldier since he was 11 years old. Even after moving to his dad's house when he was 15 and exploring a whole different side of teenage-hood, at 17 he called me up and asked me to take him down to the recruiter so he could sign up. He knew his dad wouldn't do it and he knew I would do it. I knew it's what he wanted, it's who he was always meant to become, a soldier's blood ran inside him.

He joined the Oregon National Guard (like his step-dad had done just a couple years prior). He became an Infantryman and was so proud! I flew to Columbus, GA to watch him graduate from basic and AIT. He came back to Oregon and did his monthly drills and yearly advanced trainings. He even had a stint in Thailand where his unit went there to train with the Thai Army.

He talked about the rumors of his eventual deployment to Afghanistan and the rumors changed over and over and I knew he wanted to deploy so badly (because that's why he signed up) that I thought maybe, just maybe, he was being more hopeful about the rumors than they were true. Ultimately all I could do was wait and see what happened.

It happened. He got the date. He went to AT to train for their deployment. The pre-mob ceremony was scheduled and I even signed up to go. It wasn't real yet.

Next month became next week and then it was tomorrow morning that I had to drive him to where they'd board buses that would take them to a plane. It still wasn't hitting me in my heart. It never does. I handle things logically and take care of logistics and planning. I'd helped him switch his phone carrier, add me to his bank account, copied his orders so I could cancel some contracts for him. I'd got the instructions for sending his things to him when he arrived to his first location. But I hadn't felt it yet.

The long drive to the bus was not filled with much talking. We had said everything that needed to be said and now it would just be fluff. Neither of us fluff much. Then we pulled into the parking lot and as he unloaded his gear from the trunk I watched my 6 year old give his big brother hugs and tell him he'd miss him. Then my husband shook his hand and probably pulled him in for a man hug but at that point I was in a fog - it was almost my turn. I could tell Josh was wanting it to go quickly and have as little mush as possible (he gets that from me). So I gave my hug and then he walked away. I didn't cry. I didn't say any last words from my heart. That's just not what we do. We had said all that needed to be said and he knows what's in my heart. Giving it to him at this moment would not be helpful to his hard shell.

I watched him walk away and I was thinking, "Oh my God that's it?? It's over?? That's all??" I got back into the car and slowly pulled out of my space and drove around the lot to the exit. I passed right by him and he didn't look at us, no wave, no nothing. It was typical Josh fashion and he was just like me, so I understood. I still didn't cry.

Then...I got about a block away when I got mad at some stupid trivial thing and started to blow my lid. My TBI husband, living in the moment as he does, asked in a very defensive tone, "What's the matter with YOU"? I replied, "REALLY"??? (ready for a brawl). And he made a smart move to just reflect for a moment at where we were and why, then he said, "Oh ya" with a sad and understanding tone in his voice and that's when I cracked!

During the weeks leading up to this day I had been told the details of where he'd be deploying and what their missions would consist of. It would not be void of danger. I would try to share my worry and sadness with Dean only to be met with his thoughts that this would be no big deal and that I was worrying for nothing. I tried to help him empathize by asking him to picture his cute, little, innocent, 6 year old being in danger and telling him that that's what this was like for me - training or no training - I'm the mom and I don't know what that training is like. He tried to understand but his emotions never could match mine.

So now we sat in the car and Dean did his best to understand how hard this was for me. I still don't know why my head can understand something and my heart just has a mind of its own. So my heart is breaking while my head thinks I'm being silly. My head is wondering why I didn't express any of this before, while Josh was here, would it have helped him? Would it have been important to him to know how I really feel? Hell, I didn't even know how I would really feel until that hug and watching him walk away. So the answer is obvious!

I took him to that bus yesterday morning and since then I've been forced to get out of my pajamas once and outside of that I've been in them. I just feel overwhelmed with bummed-out-ness. I'm just physically sad and depressed and he's not even in danger yet! He went to freaking Texas first for more training. But he's gone and I guess that's all that matters to my heart.

You see because of my unique predicament, I realize the reality that there is a 99.9% chance that the boy I birthed, the boy I read to and taught, who I took to football practice and Sea Cadets, the boy I homeschooled for a few years and who I fought with, the boy I helped graduate from high school by the skin of his teeth walked away from me yesterday and isn't coming back! That boy, who hasn't been innocent in quite some time (he IS 21 years old), will go and see things and experience things that no training can really prepare him for. I know now that there are more than two options - coming home or dying - I know the giant third option that is the most likely - his body will come home but his soul will have changed and his spark will be different. Yes this time is much different because he's not my best friend, my partner, my most intimate which Dean was. This time is a whole different journey that can't really be compared to the first one I walked. There are similarities - the worry - the wonder - the hope - the sadness - but ultimately nothing can prepare you for what you don't know.

My song

A husband with a TBI and PTSD means that most of the time he doesn't share his feelings for me with me. I have to ask or prompt him. In his world, he loves me and just thinks he tells me so of course I should know, and he's content. In my world, he's distant and busy and is always giving something else his attention and focusing so hard on it that he can't spare even a look in my direction, and I'm lonely. Even when I'm working close to him helping him figure something out or research something or complete a task there are no "feelings" there...it's only work.

Music has this very special place in Dean's life. He has it playing all the time in his shop so he can hear it in the distance even when he's out in the pasture. It's like when it's playing that means his engine is running. It gives him the right fuel for his brain to stay on track. Without it he makes more mistakes, is more frustrated, and not in a very good mood. With it on he's smiling, singing, focused, processing pretty well, and takes these little walks on memory lane in the deep recesses of his past. Music always takes him to a place where used to be and allows him to visit his life before his injuries. It's such a joyous blessing for him to have the secret passageway to his past while its also sad to know that music is the only connection to this happiness. 

With all his day-to-day seriousness and distance it is the most wonderful gift he could give me when he hears a song over and over in his shop and one day, when I happen to be in there while it's playing, he tells me "Oh here's your song" and he does his little, happy, jive dance around the garage while singing it to me :)

I remember this song from when I was younger but I had to run in the house to look up the lyrics. They really do sound like his sentiments! He is a simple man of few words. When he says words he doesn't embellish or otherwise make words bigger than his message. When he says something he carefully chooses his words and mean their literal dictionary meaning and he even uses words to mean what there origins are. He's got a word thing...haha.

So, here's my song:   (enjoy :) I am)
Right Down The Line

You know I need your love
You've got that hold over me
Long as I've got your love
You know that I'll never leave
When I wanted you to share my life
I had no doubt in my mind
And it's been you woman
Right down the line

I know how much I lean on you
Only you can see
The changes that I've been through
Have left a mark on me
You've been as constant as a Northern Star
The brightest light that shines
It's been you woman right down the line

I just wanna say this is my way
Of tellin' you everything
I could never say before
Yeah this is my way of tellin' you
That every day I'm lovin' you so much more
'Cause you believed in me through my darkest night
Put somethin' better inside of me
You brought me into the light
Threw away all those crazy dreams
I put them all behind
And it was you woman
Right down the line

I just wanna say this is my way of tellin' you everything
I could never say before
Yeah this is my way of tellin' you
Everything I could never say before
Yeah this is my way of tellin' you
That every day I'm lovin' you so much more

If I should doubt myself, if I'm losing ground
I won't turn to someone else
They'd only let me down
When I wanted you to share my life
I had no doubt in my mind
And it's been you woman
Right down the line

Words that can't do justice.

Over the past few months I've been only slightly aware of my sadness, anxiety, and needs and have been watching myself wondering what can I do about it? What can I write about it? What do I need? What is wrong? And because I couldn't come up with an answer, I haven't written anything about it here. Instead I've been distracting myself from my feelings by getting involved in other people's drama (I'm learning that I do that often). I am going attempt to just muddle through it today because I think it's time.

I don't know how many years it will take for me to stay aware of the here and now of my new life with this new Dean. I seem to have thoughts in the back of my mind that if we have a change in our life it will somehow change our life or change Dean or change our relationship or change my abilities to cope with it all. I don't know if I necessarily expect anything specific but I am looking for improvement. I guess I do get some "change" but only of scenery and the illusion that the transition period is bringing some relief when it was only a transition. What I mean by that is when everything changes, routines are up in the air, moods are up in the air, everything is up in the air and since that's a break from the norm I let myself hope that when everything settles down it will all settle nicely in a more manageable way which will bring some relief. But then I'm awakened by the reality that even when things are up in the air underneath it all and when it all settles back down, it will still be the same. I will still miss my husband and our relationship, I will still get frustrated with stupid TBI and confused with stupid PTSD!

I've been swirling around with those feelings and thoughts for a few months now. I go back and forth between false hope and distraction and think "What do I need"? "What can I say"? I don't know how to answer the typical question I get which is "How's the new house"? I mean, there is the response that everyone wants and that response IS true but it's certainly only a minuscule part of the truth and that is ~ The house is great! Life here is awesome! Dean's doing well! But the rest of the answer to their questions is ~ The house needs so many little things that will take us years to accomplish because Dean moves at 20 mph and he just can't get to everything. I will need to become a damn contractor myself so that I can do some of these things. Life isn't awesome, it's just in a new location and the same things suck. And Dean's overall health and abilities aren't better, they are but they aren't! It's just more complicated and no one will understand anyway. So...I give the answer people want to hear while underneath I'm alone with needs that I don't have words for.

When average folks hear about how this new house brought work along with it, I fear the response will be along the lines of "Well, what did  you expect, you bought 18 acres"! As if I was not aware of what I was doing? I'll tell you that no matter what house we would have bought, whether a condo or a 1000 acres, I can't escape Dean's TBI/PTSD. His symptoms will never go away, they may change depending on where we live (some symptoms get highlighted while others are easier to cope with and vice versa) but where we live won't cure him! I think people expect a cure because TBI/PTSD symptoms are affected by the environment. But when it boils right down to it, unless you live it, you won't understand. It's like trying to explain colors to a blind person or sounds to deaf person. I can use words that sounds like they have meanings but no words can capture the complexity of it all! THAT is ultimately what makes me feel so alone! It sucks having no one to just take your word for it and give compassion without having to understand it.