Friday, January 22, 2016

Emotional rollercoaster

Days like today when there is nothing going on, no real stress, no anniversary dates close, no med mess-ups happened recently, nothing to recover from so you'd think he ought to be having a good day then? Nah, that's not how it happens. Even when there are no outside-of-him forces causing a bad day, there's still a 50/50 chance that he'll have one for some reason which I have yet to figure out. It would be great if I could predict them all, but I'm still hoping for that day to come.

Each day it takes about an hour from the time he wakes up for me to determine whether he's having a good day or bad day. It's 8:30 am and I'm learning that today is a bad day. Obviously "good" and "bad" are subjective terms and if I really wanted to get technical I could make a system where there are grades of good and bad because there really are - there's "bad": he can't balance or carry things, he's tripping, knocking things over, stuttering, choking on food, can't think and so can't get his farm jobs done well and is exhausted from trying - these days make him so frustrated that we just avoid him so he won't yell; then there's "bad" like today: his balance is ok (not great but not falling), his mood is trying to be upbeat, he's able to take in stimuli but here's where it's "bad" for me personally. He can barely take in one stimulus today and it can only be certain kinds and only he knows the definition of that. These are like walking on eggshell days. I can't be near him because that's too much pressure for him to perform and would crack the egg. These days are sad for me because they string together day after day so that I haven't gotten to spend any time with him for days. I get to hear him chuckle, to see his facebook posts, to watch him walk around and out the door but I have to just hold myself and my needs and wants back or I take his little abilities away and it will turn into a worse day for him.

If I haven't said this before.....I am an extrovert and am madly in love with my husband, so having to not interact with him and being a stressor to him is so sad and lonely for me that after days of it I just want to cry...well, I do cry. These are the days that I am sad for what my marriage is and how far away from what I want it to be it is. Ya, I know there are way worse things that could happen, but this is my sadness and I spend a lot of time being grateful but not at this moment. I'm sad because for me, my marriage is a constant monitoring of my energy and connection level. I am a 100% girl. I'm all in or I'm all detached. Trying to be somewhere in the middle is painful, slowly heartbreaking, suffering, like watching a loved one die over the course of weeks, slipping away. You spend day after day losing him then out of nowhere, remission and he's cured, then it's back and he's dying again, then he turns around and it looks promising, then back on death's door. The losing and dying days happen far more often than the remission days but the remission days are so happy that you hope for them and long for them and are sad while you wait. The back and forth of my emotions is exhausting for me. I try not to think about the day that remission days don't come. I try not to think about the day that he's not here at all. I try to use those sadder things to help me be grateful for what I have....but it's just not a marriage struggle that most would think could even exist.

The stress that my being pushed away from him then being pulled toward him then pushed away from him causes is my main stressor. It's the reason I say no to friends/family/events, the reason I feel I can't take any more things onto my plate. The stress of it is what zaps my energy. I wish I could ask someone else how they deal with it? How do you love someone everyday who you lose most of the time with intermittent sprinkles of magic? How do you not detach and not care so as to protect your heart so that you don't hurt the man you love? How do you stay connected and just be in turmoil day after day walking into each morning with the hope for a good day only to be let down about 80% of the time? How much more can I take?

There's a meme that goes around that says something like We don't know how strong we are until being strong is our only choice - It's my only choice. I won't get out of my marriage. I love him. I live for the good days. I respect him, admire him, am committed to him, I won't abandon him. Strong is my only choice but I always feel like I'm at my breaking point, like this is it, this is all I can take, and then I keep going.

I used to think strength was being unbreakable. I was fooling myself because while I thought I was unbreakable, I was slowly breaking myself with food. I've learned that strong is being bendable. Trying to live bendably is still a challenge. I can't run to food for comfort. I don't know what to do to get comfort. Until I figure that out, strength is uncomforted, it's crying, it's not knowing, it's feeling at your breaking point everyday, it's struggling to take care of everyone else when you are a zombie...a walking, physical body contained of numbness.

In the midst of the daily struggle, I logically know that it's good for me to make goals and work to achieve them. They don't mean as much when I accomplish them because none of them is what I want most - my husband - but they will have to be the closest substitute and they keep me occupied anyway.

Here's to "I'm good" answers when you are just barely holding on and you don't have the energy to explain it all and it doesn't matter anyway. Have a "good" day.

Wednesday, December 2, 2015

Some hindsight insight

After emptying my emotions in my last post, I went back and read the post I wrote when his soul first came back and I was in bliss! 

When his soul first came back, that's when he was able to have the realizations about opening himself up to me and sharing his whole self and not protecting me from the pain he held inside. Now I realize that had his soul not awakened, he couldn't have had those realizations. It wasn't that the realizations woke his soul, it was the other way around. I know this because now the realizations are not even understood by him. He's unreachable. When his soul is gone he doesn't even understand what one has to do with the other, like I'm speaking Japanese. 

I wanted to give that update in understanding because reading the previous post would seem to lead one to think that his emotions are in control of his soul being awake or not. I can tell you that isn't the case. There certainly is no manual to how brain injury works and it certainly isn't the same in any two people, so I am experiencing as I go, taking notes, analyzing the information I learn, etc. As is usually the case with anything, I often have better understanding in hindsight. 

He's gone again

Well it's been probably a week of his soul not being there. I've given up hope that it's coming back. When it first came back, of course I was ecstatic!!! Then it began to flicker and sometimes it wouldn't be there but would come back and I tried to learn that maybe I'll get him part of the time. But now he's not there. He's just gone. It is an unbearable pain!

Right now he remembers when his soul was there. He remembers when he could KNOW I was there and FEEL my feelings. During that time he never jumped when I touched him because he could FEEL that I was going to touch him. He wasn't surprised by me or anyone. He remembers being connected to all life - when he'd walk outside and could FEEL the energy in the sun, the grass, the trees, the animals - he could FEEL its life. His memories will go. I already know they will. Then he'll be reserved to being the lost one who doesn't know he's lost. He'll be sleeping and not know he's asleep. He'll forget what it was like to be awake and he'll be full of fear again and after afraid for so long, it morphs into terror and then he'll be locked inside his own dead room. Since his mind works he knows that allowing himself to feel the grief of his loss is a very bad thing. It will spiral into suicide being an option that makes sense. So he won't go there. He'll use his mind to only focus on what he hasn't lost. He can smell things, he can see things, he can touch things, he can make things, and he can make things happy....on the outside.....which is all he can experience. He is grateful to God for another breath. When you are the one that loses yourself maybe that is what you can do.

For me it's very different! I am watching my husband slip deeper and deeper into his coma. He lays on the hospital bed with no brain activity to experience life but his heart beats which keeps him warm. He's essentially dead but when I kiss him he's not a cold body. Part of me feels selfish for keeping him alive just so I can feel his warmth. Part of me feels grateful that I can still feel his warmth. Part of me is really pissed off at God that all I can feel is his warmth! What kind of horrible trick is this??? I had lost my husband almost 6 years ago, I went through it (or not really) able to be distracted by all the fighting I had to do to pay our bills, then in my loneliness I had to find myself since I was by myself, then my wants and needs emerged until I finally actually dealt with the loss! And then.....he came back....and I felt the most joy that I could ever feel - a MIRACLE that God brought my husband back to me! And now he's gone again??? How can I go through this all again???? This is so unfair!

Living grief is what they call this. It is seriously fucked up!!! My husband body walks around seeing, smelling, tasting, touching, breathing and not experiencing or not connecting or remembering while I ache in my soul that he's a zombie. His body is here and his soul is gone. When his soul is there I can see his eyes sparkle, dance, and sing the most beautiful music and I am with him. When his soul is dead I can see blackness in his eyes, they are flat, dark, still, and tired.

I feel so afraid and angry and sad that I'm overwhelmed! I want to just scream! I am lonely again and I must put on my happy face to keep keeping on. What a sick fucking joke!

Right now, while he remembers his soul, we can grieve together like it's a child we both lost but soon he'll forget he had a child and then I will be even more alone. When his soul was here I'd tell him about when he first came home and told me to not look at him. Back then I just felt that looking at him made him uncomfortable like a room of strangers were staring at him because he couldn't FEEL me...there was no connection. I didn't know that then. I told him of my first realization that he was not there....when I sat across the table from him and while he was telling me a story I snuck a peek at his eyes and I saw nothing. I actually gasped because I saw what he looked like dead. From then on I even tried explaining that to doctors. I would tell them, "Look at his eyes, it's like they are dead" as if they'd be able to tell? was only me that could tell. Now that I remember all of this dead vs. not dead, I was talking to a very close friend of mine about his eyes and she said that before he was deployed she remembers his eyes danced and sparkled and when she came over and saw him after he got back, his eyes were dark and lost. THAT made me feel so good! To hear that validation that I wasn't the only one, I'm not crazy, he really is lost.

Now I have anger, sadness, and memories of my best friend, my lover, my soulmate being WITH me and now he's just not.

Monday, November 9, 2015

Miracle in our relationship

I don't know how honest and open I've been over the years about Dean's and my not being connected like we used to be. Since Afghanistan our connection has been me to him, his physical pain, and his moods...I can feel them. But he has been unable to connect with me. This has been the root of my loneliness! Even though I can be with his physical presence each day and some days we can have great conversations, it always ends abruptly where I see that he wasn't really connected as he's completely unaware of how his interacting with me affects me and he talks at me and I try to interact back but it has to be about him. I've tried for 5 years to fall in love again with a man who may never be connected to me like he once was but instead just interacts with me. It was sad for me to live this loss but I'd do anything for him because I love him.

Well we recently had a miracle touch our marriage!

I won't go into what precipitated it because that matters less than the miracle that came out of it. Dean hit rock bottom in a depression which caused him to pray to God for help in connecting with me and God answered his prayers.

Suddenly his eyes have life in them again! His eyes dance, smile, and sing like they used to. I can look into them and fall inside the pools that are the window to his soul. I feel like I get to fall in love with my new old husband and it's blissful! We are realizing that Afghanistan caused him to shut off a part of his self to me in order to protect me from the pain that lives there but that shutting off means that he's not sharing his total self with me. When he hit bottom he realized that if he doesn't share his total self with me then I'm not sharing my total self with him because that's what humans do to protect themselves. When you are protecting yourself in your marriage though, it means there's an assault somewhere to protect from. It plays in the background and is hard to pinpoint or explain. Another thing he realized is that there really is only ONE thing that a spouse can give his/her partner that someone else can't come along and give and that is their self, their soul, their vulnerability. Shutting part of him off means that what he WAS giving me, someone else could easily give me and he didn't like that being a threat to our marriage. This is why he sought God's help. We don't know how but his eyes suddenly became open and able to connect with me.

It's not like a light switch. There are still limitations we are learning. He still gets exhausted by energy use. But when he's not exhausted, it's different. He looks at me now with smiling eyes that peer into my soul again. HE's back in his body, it's not just his words and actions.

We realized that for 5 years he's been learning who he is again with his new abilities and limitations. For 5 years I've been learning who he is and having to modify my energy, habits, lifestyle, everything. But for 5 years we haven't begun to define our WE. There was no WE. There was him and I and we cohabited and I was his caregiver. I still tried to be the good wife and he tried to be the good husband but even that wasn't the same as a WE. I always treated him with respect and honored him in my caregiving. He always tried to make me happy and was thankful I stuck by him. But we were like two separate people learning to live together with his new self. That's just not the same.

Now I am enjoying our new adventure of making a WE. Who are we now? Stay tuned for sure.

Wednesday, October 28, 2015

When reality slams into your face like a ton of bricks.

Over the years I've worked to get Dean to a point where he's stable enough day to day, in enough habits (which are the only way he "remembers" anything) each day to relieve me a little bit of all the little care taking tasks that I do. I'd like to one day have a life where I have SOME semblance of freedom to do things for ME. It seems, though, that in creating that daily routine of habits, I'm inserted into the equation because I live here! That means even if I'm the not one pouring his cereal, the fact that I am here in my living room while he does it and that he can say his few words to me, makes me a safety net for his independent tasks. When I am not here (now I'm more trying to put what I'm feeling from him and piecing together the overall impression I get from him) his anxiety level goes up? .....something happens to him.....that causes the habits that he's usually proficient at to become tasks that are flying all over place while he tries to catch and it's overwhelming to him. A good analogy would be if you were out in the woods at night, even with a flashlight, it would be an uneasy'd be predator territory, outside the safety of your structure/cabin/home and roaming around not knowing what is lurking in your shadows. Now take that same scenario in the woods, with your flashlight, and add a friend. Suddenly it is 10x less scary to be in that scenario. Even if you and your friend are not saying a word to each other, the fact that they are has a safety attached.

*** I am that safety.***

Funny enough, Dean could walk alone in the woods with less uneasiness than he can live in a house.

So over the years I've worked to bring him to a stable place day to day. Every great once in a while I do something for ME that requires me leaving. I had to make a quick business trip to Washington DC a few days ago....the reason it had to be as quick as it was is due to Dean not being able to handle life without the safety net very long. I flew out on Monday morning, got to DC late Monday night, went to a staff meeting Tuesday and got directly back on a plane to be home Tuesday night right before midnight. I did just under 14 hours of flying (not including time changes) in two days and with time changes was pretty exhausted. It was a trip that I'm really glad I went on because the meeting I attended was a vital piece of my success in my new job. I gained a LOT of knowledge that I can only get when I'm interacting IN PERSON with a situation! I was stimulated! I felt like I was part of something! I AM a part of something! I loved learning about what I'm a part of! I felt alive!! Similar to the feeling I got in NYC but this was even more vitally a part of me since it involves my job. I really like working and being part of a machine that creates something, I like feeling like I contribute to something being better.

So I get back home after a day of feeling alive and part of an awesome machine with a purpose, at midnight, crawl into bed very tired, wake up early and get my son off to school, go back to bed....haha. Then upon waking for real and spending some time with Dean, he wants to know how my trip was and I of course want to spill out all of my happiness and share what I learned. I'm feeling great! .....for about 10 minutes. Then he gives me the cues of that's all he can take, he's reached his limit for listening and taking in my energy and information. Please understand, his heart was SO ecstatic that I'm back like he is humpty dumpty and he got put back together and now his life has it's engine and can run again. He truly missed me like he thought he'd never see me again. But after 10 minutes he just can't be a part of MY vitality. Because I love him and he's hurting, I now have to go through this grueling process of sucking my energy, happiness, and purpose back inside myself where it lives in a dark cave and can't see the light very often. It's this total sadness that just hits me! This is my life! That meeting yesterday that makes me feel so good isn't really my life -- it's my dream -- but when I wake up it's just not feasible. Yesterday's meeting causes me to make goals and plans and have desires and want to achieve and makes my heart beat! And today's reality makes me realize that I can't have any of it. At least not yet.

I know it's silly to ask if anyone else goes through this. This is what it means for many women who care for their wounded veterans and yet there are still a lot of wives that are not having to live this way. Wounds are different even if they have the same name. And those wounds take different amounts of time to get to certain stages of healing.

I'm trying to be patient. I'm trying to have faith that God has a plan in all this, there is a reason I need to learn this self-restraint and to wait for my time. I know from experience that when I'm supposed to learn something, I can get through it a lot quicker if I just figure out what I'm supposed to learn and learn it! Perspective on one's own life is often hard to have. We can more easily see others' challenges and solutions more easily than we can see our own.

And sometimes along the path of learning, I just need to take a few moment to see the SUCK in it all! Reality sometimes SUCKS!!! That is all.

Thursday, September 17, 2015

Time & Season Changes

I am simply copying my facebook post of September 9th, 2015 to have a more permanent record of what's going on and to share with my readers what goes on with changes of the time/seasons.

TBI/PTSD fact of the week....things you may not know smile emoticon Weather changes (change of seasons) and shortening of daylight hours REALLY messes with TBI/PTSD symptoms! Constant migraines, general malfunctioning of his body (clumsy, off balance, pressing wrong buttons, doing abc when he was trying to do xyz, etc). Without season/time changes he encounters these problems more randomly, say 3 to 5 times a week, not all at the same time, and usually some wrench thrown into our routine caused it. But with season/time changes these problems are persistent and happening all together. All I can do is watch, bring meds, and try to be his extra hands while leaving him alone/giving him space.

Wednesday, August 19, 2015

"I wish blood would squirt out of my eyes"

"I wish blood would squirt out of my eyes", he says. "That way people would know that I can't talk or think or do this right now". I don't know what it means when he says "My brain hurts". My brain has never hurt before....I have never felt my brain before. I've also never felt my spleen before and he felt his during one (or maybe all) of the IED blasts. He felt all his organs during the blasts.

These are the things that make caregiving very touchy. Obviously I don't want to cause him pain and when I don't understand something I ask a question which then causes the pain I'm trying to avoid causing but I didn't know that a question would cause the pain until after I asked it and now it's too late. The part I get is the grouchy (in pain) bark of a response which puts me on edge. I realize that I'm on edge a lot and I don't think there is really anything to do about it. I don't blame him for me being on edge, if I was in pain all the time I can guarantee you that I'd be snapping at everyone! I just can't really help it that I've been jumpy and on edge when barked at since I was a kid.

We went to the beach for a four nights/five days. Sounds like a lot but it's the minimum really for Dean to get any pleasure from the trip. On the day we are leaving he has 3 panic attacks while packing because the stress is overwhelming. He says he's so glad to be going and will be so glad when it's over. He has always loved the beach, it's where we got married, we both have a special love for the ocean's beauty & power. The day of travel is exhausting for him. It takes at least the entire next 24 hours to recoup from it. Then he basically can do one "outing" each day. That means he can leave the hotel room to be in public for one hour each day and after that, he's exhausted. Sitting on the beach not around the public he can do for a few hours but eventually it's the sun that gets to him (light and heat become too much). So when we get to the beach on Saturday evening, he can't leave until Sunday evening. Then he joins us for an outing Sunday night, sat on a beach chair for a couple hours on Monday, a quick outing on Tuesday, and we left on Wednesday morning. The entire trip back on Wednesday is exhausting causing panic and exhaustion. Once home he'll be sleeping and recouping for a few days (I hope that's all it takes). He loves it and he hates it but we must do it because he loves it.

We are back home now starting the recoup process. He's taken his first and second migraine meds, he's been drenched in sweat, he's had his choking fit at dinner, and now he's out to smoke a cigar. I can see and feel that he wishes he could just climb out of his skin for a while and float around as a body-less spirit. I wish I could grant him that wish.