It's been an overwhelming last couple of days. We recently just got back from a trip to a Warrior Beach Retreat for Wounded soldiers in Panama City Beach, FL. As many know, taking a vacation usually requires you to have some down time when you come home. This particular retreat was overwhelming emotionally, patriotically, and well just being around so many people which we normally aren't. Most of it was just seeing that much patriotism in one spot just for my husband which was a part of our lives we didn't get. It was somewhat of a closure for us. My husband did very well up until Saturday night and then started to slip a little. Sunday's flight was completely horrific as we were treated like garbage by the clerks, steward and stewardesses aboard US Airways in regards to my husband's service dog, Gunny. It was humiliation, pointed out by the crew in front of all that were on the plane and then disregarded of our rights to Federal Law. By the time we got home, my husband was in full PTSD mode with the ranting, raving, foaming at the mouth and myself waiting for his head to start spinning all the way around. I had wished on that flight that I had something to knock him upside the head with!
We hadn't heard a single thing from Social Security since we applied in February and our advisers and coordinators were much under the impression of "hey, no news is good news". Now in my mind, and from reading other stories...I knew we would be denied Social Security on the first try. In my heart though, I guess I was just praying to the big guy upstairs to give us just one good push forward. Seems these days we take one step forward and get knocked thirty back. You get up, you dust your knees off and then you keep right at it. I am struggling to get back up again this year. If we had his social security, much of the financial stresses would be off both of us and we could breathe a little bit easier. I am overwhelmed, overworked, ill, tired and frustrated. We came home to find the much anticipated letter from Social Security letting us know that my husband was denied. Insert all hell breaking loose
To make matters worse, our car which we left at the airport....had a hard time starting and the headlights are out on them. Don't know what's wrong with it, but only the parking lights work on it. After the all day trip of flying and the issues US Airways gave us, it was just too much. I realized I felt so good in Florida although he had some spells, that I really didn't want to be back home. I wanted to run away and not get in the car or go home. I know that sounds horrible, but as soon as we pulled on our road my stomach began tightening up, the butterflies turned into a swarm of angry hornets and my heart was racing. It's not that I didn't want to see my children or be home again...I just didn't want to come back to a home that's filled with stress, paperwork or phone calls.
I know taking care of my husband is hard. It's even harder when you have to navigate, fight tooth and claw with the government getting earned benefits, but damn....is it hard when you don't know what you are doing. Maybe I am too controlling but I have learned from past experiences in my life to have back up plans and never count on that first plan to work out. It's not me being negative, or Miss Debbie Downer....it's just what life has taught me and working with such entities as Social Security, the VA, and the military....you just learn to guard any hopes you have because they can become so easily crashed. After so many downed planes of hope, you begin to not show any emotions, have any type of hope and always expect the worst when it comes to them. Many of us spouses always wonder why our Veterans are like this with PTSD and/or TBI. I think personally we are becoming more and more like them, we just don't realize it.
I am struggling to keep up with the jargon of all this paperwork and much of it not making sense. The military has placed many demands on me that my health right now and my sanity just can't keep up with. I work all day and the mountain of paperwork just seems to keep growing. There is so much paperwork on our end that it is indeed very overwhelming because you can't just pick a spot on a fast moving train and proceed to jump on. On advice from a dear friend, I made a list yesterday to start marking things off and only do so many things a day....but that list is two pages long! In the past, almost four years this October, all I have done is fight, fight and fight some more. Now that I am not having to fight as much, I am having to wait, watch and pay attention to every little move they make on this chessboard of our lives. Adding to that, I am having to depend on complete strangers to have our "best interests at heart" and from past helpers, that has proved to burn us quite badly. Some of it is now out of my hands, some of it is solely in my hands and other parts are just "wait and see". I have no back up plans, no safety nets and have used all my aces that I held up my sleeve to get to this point.
We have more advisers than most I know, which should be a good thing and am appreciative. I find though that sometimes I often leave off the conference calls with more questions than answers, being rushed, and under so many deadlines. If they only knew how much stress I was under and panicking......wonder if that would make a difference? I really don't like the terms "this is a risk we will have to take" because this isn't their lives we are screwing with....it's ours. Risks are just something we can't afford to take because if that risk coin lands on the wrong side....we will lose everything from home, to cars, to just our entire lives. Sometimes I wish that some of them would just have a little sympathy and just a little understanding that the demands they are placing on me and all the confusion is literally eating me from the inside out.
The past weekend at the retreat, which I will write about later when I come up for air, was wonderful. I had the honor of meeting 48 other women who had more strength, courage and determination it radiated off of them. I felt weird being there because we are a Reserve family and our challenges are different, but they didn't seem to mind that. I really felt with many of them, I had no right to complain because their husband's injuries far surpassed my husband's but it didn't feel like anyone played the wounded rank card and for that, it was a beautiful experience to have. It was a busy five days filled with excitement, joy, fun and surprises. Saturday night though proved to be a sign that my husband was overwhelmed, exhausted and "The Beast" came out once more. I have to admit to you all that this strong Mistress fell apart and no matter what I did to calm myself and him down....my knees were knocking so hard you could hear it. You would think after this long, I would be used to these outbursts, the temper, the "shadow warrior" coming out but I just am not. Do you ever really get used to it?
My husband didn't throw anything, didn't scream or yell....but had this eerie, calm, threatening, and totally scary tone of voice. His pupils were dilated so much that it was like looking at solid black eyes, he was smiling and crying at the same time and my God the words that came out of his mouth were so hurtful. We had such a good time that day that I don't know what set him off. Nothing happened during that day, nothing was said to make him upset, we were just having fun. Just something as soon as we walked in back at our beach house, changed within him. We let his service animal to run outside and play a little to get the energy off and to use the bathroom. Somewhere between locking up for the night and heading upstairs, he flipped. His emotions were all over the place, everything was my fault, everything that I did was wrong and the look on his face was of pure hate. I can handle his manic moods, his ups and his downs, but when his face changes like that, it doesn't look anything like him and quite frankly....that scares me more.
Suddenly my smiling laughing and in good mood husband turned into this dark, malicious thing that I didn't recognize. The fear that settles over you is as heavy as a wet wool blanket you just can't shake off. Before I knew it, he was yelling at me about my having power of attorney papers and that I was going to commit him again. He demanded that I present them right there and then, even knowing we weren't home. The food that we had eaten over the weekend which I had nothing to do with, was poisoned by me and I was trying to kill him. I wanted him dead because I would get all this money supposedly. I was going to leave him and he would kill me before I ever got the chance to get out the door. I was shocked and not really sure what to do at that point. All I could do was let him rant and rave, hoping like hell he would get it all out and be done.
So many hurtful things and then the laughter at me when I started to sob. I was shaking so bad, I could barely stand up without my knees wanting to buckle beneath me. I tried to keep him calm and trying to get him to understand that he was having a bad spell and no one was hurting him. My husband's service animal who was downstairs eating his supper finally decided to come up and immediately jumped up on him barking which was surprising as he hasn't done that before. My husband stopped for a minute, looked at Gunny, then walked to the bed and was out like a light. My husband's dog and I kind of stood there like "What the hell just happened" and because I was still worked up...went out and sat outside for a long time with his head in my lap and me crying. All I could think to myself, is how much longer can I keep going? I was so scared I didn't sleep a wink that night. Even when I layed down, our dog tried to snuggle as close as he could get without getting right on top of me. I guess he knew how terrified I was and I was grateful for the attention he gave me.
My husband didn't really remember much the next morning but saw my fear and hurt. I explained what happened and he didn't say anything. However, in "share time" that morning on the last day of the retreat, he stood up in front of fifty other people and apologized although he doesn't remember most of it. He just remembers coming in, brushing his teeth and his head hitting the pillow. I knew his apology was sincere, and he has never ever done that before so I knew it took a lot of guts to stand up in front of his new friends to admit his PTSD got the best of him and that his shame was great...but damn those words. They just keep echoing in my head. How do you keep helping someone and stick with it when the PTSD Beast hates you so much? When do we as family members ever really stop becoming the enemy?
Name calling I can deal with. Other things hurt to the quick and still stings long after they are said and done. I didn't realize until January happened this year how many scars I had and how they open and bleed so badly each times these spells hit. I am trying to be strong, keep my chin above water and as someone once told me....keep swimming. It's just times like this where I feel like the lifelines I am grasping a hold of, is slipping. If I go down....he goes with me. It's a heavy heavy burden we are all carrying.
Seeing the letter from Social Security absolutely ripped my heart out and stomped it into pieces. I expected the disappointment, I really did. It was the frustration of what the letter said that upset me so. The letter read that "according to VA medical records, your PTSD has gotten better with medications, therapy and inpatient treatment", "TBI was not treated by the VA so therefore it must not be as bad as you claim it to be", "You walked into the doctor's appointment so therefore your legs must not be hurting that bad nor your back." "Total decision of denial was based on all medical records and we find that you can find a job that is less demanding and work with your disabilities." I don't know whose medical records they were reading, but it wasn't my husband's. I wondered if they missed the letters from his doctors stating they will NOT release him to work or drill and that in their professional opinion he is permanently and totally disabled as well as unemployable.
I really wanted Social Security to have stayed the night with me on Saturday and feel that same fear, that absolute hate that my husband's beast spewed from his mouth, to see the huge waves of emotions he showed in less than a minute. I want them to see the crying and the laughter because it truly is like watching a horror film unfold in front of you. I want them to hear those words and then be in my position as being the only person that is keeping him from drowning in these churning waters. I wonder if their decision would have changed? I really would love to call them and say "Guess what Dumbass....our VA doesn't have a TBI clinic which is why he hasn't been treated!" All that work, all that time, all that stress and trying to do it on my own.....failed. So then my heart started panicking, racing ninety miles an hour and pounding out my chest. I was so afraid this would set him off, or that January would happen all over again. I gave my son the look of " be prepared to run with the little ones" but my husband instead, just sat down with his head in his hands and said "what more do they want?".I myself have struggled trying to figure out what I did wrong, although I know in this old head of mine that its just standard procedure.
Yesterday was a better day for my husband. It wasn't for me. I am still struggling with sleep, nightmares and the past spells replaying in my mind over and over again. I try to shake them but they just keep coming back. Add all this other stuff rolled up in one big giant ball and I feel myself cracking a little too. I am writing all this out because several emails spoke about being alone when these "episodes" happen. You aren't alone, I promise. I have been there and done that many times. This post may not make sense to anyone, but wanted to write it out....let it go and try to be rid of it. This is part of the war that Uncle Sam doesn't want you talking about but it happens to all of us every single day of our lives. I am going to fight the Social Security with an appeal although unsure how to do it. I will knock the dirt off my pants and try once more to stand my ground....but my heart is breaking into pieces because I am hurting this much and Uncle Sam just doesn't care. Somehow....someway, he is going to have to.
Trying to Find My Way,