Sunday, May 22, 2011

Say What Doc?

So this past week or's been a ride. Physically? I am here. Emotionally? Jeez...I have to say I am somewhat hanging on for dear life. Between paperwork, paperwork and more paperwork...seems like I haven't been able to do anything other than just that...paperwork. Most of it, I have absolutely no idea on how to fill out and much of this has seemed to stump even some of the higher ups in the military echelon who should know because that's their department! Go Figure.

 No, not the actual doctor but this is as close as I could envision

So our latest escapade was getting my husband re-screened for Traumatic Brain Injury. Now I have to admit...we are "one of those" cases where no one really seems to know what to do with us. However, like a bad penny...I just keep showing up at the VA and pushing. If I can't get it done there, I will keep going elsewhere. After several years of "chronic weirdness" as I call it, and symptoms really not belonging with the term "post traumatic stress disorder" given by the VA; we had him screened for TBI finally in 2010 which was three years after he came home. Being that my husband was the combat medic for not only three platoons of his engineer group, but also the medic for several groups under the 1st Marine Division....much of my husband's memories are a bit muddled. As you may recall, my husband was involved in several incidents such as mortar attacks, small arms fire, exploding chlorine gas bomb in a tractor trailer rig, many many concussive blast exposures, a fall to the back of the head and an accident in a humvee when a sandstorm suddenly hit them outside the wire. This all are among many others that I can NOT talk about. On some days, my husband was dealing with casualties, and many any injuries sustained himself were self-diagnosed and treated without a single thought. He was their only medic so what happens when that medic is down? Means the others don't get treated. Among medics, self diagnosis is common and treatment disregarded because their job is to maintain the others. "It's a badge of honor" one medic explained to me. "You don't stop. You get up, you shake it off and you keep right on trucking because you aren't important, the other soldiers are."

It's hard to pinpoint which event among those 17 caused the Traumatic Brain Injury although we have a pretty good idea which one it was. Although he wasn't medi-vac'd out of Iraq, he was bleeding from the ears, nose and knocked unconscious. He doesn't remember how long, or exactly what happened...but remembered someone yelling "Medic! Medic!" and waking and helping him up. Other than a severe headache, nausea and dizziness....he still doesn't remember anything prior to that or much after that. Something about that day haunts him constantly as I still to this day, get to relive those moments in his nightmares and sleep talking. He told me a few days later after this particular incident when he called home, that he had finally broken down and gone to Medical on post because he just wasn't feeling all there. He felt rattled he said, but they gave him some Tylenol and allowed him some short down time before his next security and medical mission. Some missions he worked dual positions and on 24 hours shifts, there was no time for "down time".

When we finally heard the term "TBI" and discovered that the Army and the VA did NOT screen him for it...we had him screened in which he showed positive for it. The testing for this is long and supposedly, they are supposed to break it down at the VA over a period of several days because it can take its toll on you. Of course, in the real world...that's not how they do it. It took my husband eight hours to complete the test.The first test we got a "Dr. S" who explained that he couldn't grade my husband's TBI test because "his exam is so poor and his test results are not in my psychiatric DMV book so I can't grade it". I was somewhat concerned but "Dr. S" said all he can do is give him a mild diagnosis. Now at the time, I didn't fully understand how one does the scales for TBI in regards to grading it mild, moderate and severe, and all I knew was this doctor really didn't know what to tell us. It has weighed on my mind about my husband's test being so bad that they couldn't grade it, and how we were pushed right back out the door with nothing more than "yeah, he definitely has TBI".

We were given a caseworker which we didn't meet until recently and who really doesn't seem to be able to help much or even called to check on us. My husband was sent to speech therapy who gave him a PDA to keep track of his appointments and who told him to write things down. While those ideas are helpful, it still didn't explain the "chronic weirdness" that he was experiencing like the sudden loss for words, the extreme forgetfulness, doing things he never did before like forgetting to lock the doors, forgetting to turn the stove off, and the list goes on. The other concern I had was he is having issues finding the correct words he needs when he is trying to say something. The headaches come and go, but the black floaters as my husband calls them and sensitivity to light was bothering him, which are all common. However, I started noticing the stuttering, sometimes shuffling of the feet, the fact he could not react to quick things, blackouts and other problems that just didn't seem right and no one would explain them or address these issues.

Being me, I pushed harder for him to be re-screened and we finally got it last week on May 12th. My thought process on this was maybe they will see something the other guy missed. Maybe there is the key somewhere in all these questions. We know has TBI but what can we do to start helping him? My husband was agitated and extremely anxious because the day had been long, tiresome and exhausting. We had hopes that someone could explain what was going on with these issues and so we come to meet "Dr. A" as I call him. After a long, hot day and my husband already pissed off because of other issues dealing with PTSD....we awaited somewhat on the edge of our seats to meet with this neuro-psychologist who we had hoped, held the key to what was going on with my husband. As soon as he walked in, it wasn't five minutes of the conversation he mentions to us that he was diagnosed with Alzheimer's. I have to tell you dear Readers, this concerned me greatly and my immediate reaction was "You have got to be f*****g kidding me" along with the usual alarms going off in my head that this meeting was not going to produce any answers. Hey, I am usually a positive person but the VA has turned me into Miss Debbie Downer along with having the "it can get worse" attitude ruining my normal outlook.

"Dr. A" begins the discussion of how there are so many fakers in the VA system and how that irritates him. "Disability seekers" just rub him the wrong way. "Of course" he said, "nothing like that has to do with you but people try to fake these tests and it just doesn't happen that way". Hey man, I get you. I really do. It pisses us off that we KNOW some who are simply that: disability seekers. Try being in the shoes of those that are desperately seeking help and can't get it while watching the seekers get all the benefits they want. However, I wouldn't be pushing so hard on answers for a diagnosis we aren't even getting disability for to begin with! I gather he was just venting in general but it sincerely rubbed me the wrong way right out the gate. I was somewhat confused because although he is telling us all this, I couldn't quite grasp why he was telling us this.

He goes over the test results and proceeds to tell us that my husband scored very high in some areas, but very poor in others like the language and memory. However, his problem solving skills were above normal but other portions were below normal. He then tells us how he really doesn't believe in the diagnosis of PTSD or TBI which are just "nice" ways of saying "depression and a bump on the head". The entire time we spent with "Dr. A" produced quite a bit that revolved around him having Alzheimer's, his electrical problems at his house (oh yeah I know...head banging against desk time) and while I feel sorry and horrible for him, I couldn't help but wonder....was he being completely fair to my husband and his issues?

Back to the tests, "Dr. A" reported that my husband's poor areas were showing he must have been a severely poor person in school and probably a bad student. I immediately responded back that "no, my husband went to a small school but was one of their best students in grades, attendance and in behavior" in which that was completely ignored. Spelling he did poorly on which was one of my first alerts because hell, I used to ask him how to spell stuff. Now that he is showing signs of simple things like the word control, and spelling I have to worry. He then tells us that my husband's problem solving skills were above normal which means that part of the brain is working, but other areas he scored low in. He then goes on this tirade of how my husband needs to "get over it", "get back on the horse and go get a job", "you are too emotional and depressed" and "you had TBI but its cured now. You don't want to live your life this way do you? I have Alzheimer's, live life to it's fullest. Just get out there, drop the emotional baggage and get back to it". So we sat there, and my heart was racing. I couldn't argue with him, wasn't going to waste my time even trying...but really? If it was that easy, trust me...we would have been there a looooong time ago. I kept waiting for my husband to go off and bless his heart, he just sat there with this totally defeated look on his face. So I asked intelligent, educational and rational questions for him to answer hoping for some answers and all I did was get reamed over the fact my care giving is "impending" my husband's health. I was shocked!

Now while my husband was taking his test, I was given a "what's going on in the home" test in which asked for you to check as the family member, how often, most frequently, always, sometimes, less than always answers for some pretty hard and some easy questions. It also asked for examples to be given in which I had plenty of time, so I gave this doctor PLENTY of many as I could fit on the page with the corresponding questions. I did report the blackouts, the headaches, the extreme forgetfulness, the stuttering, and everything in between and examples of how I helped my husband during the day with daily life. I reported things that are going on with him and just like it asks me...things I am noticing. I don't wait on my husband hand and foot....I don't bow down to his every whine, need or whimper and do believe that as a "caregiver" you can be detrimental to one's recovery if you are taking away much of his independence and not allowing them to do things for themselves. Motto in my home is "Try Try and Keep trying till you kick its ass!". My husband may have issues, but he isn't completely immobile, unable and is capable of doing much of these things on his own. However, the repercussions of some things like cooking can result in small fires. Not reminding him to shower or shave, or take his medications because he forgets...results in a very smelly and very very irrational and grumpy man. Driving due to blackouts or forgetfulness on time, can result in him possibly harming someone on the road or end up in inappropriate behaviors/places and not know how he got there. Because I go to his appointments with him, it makes sense that I drive.

I try to help him by giving him daily things to do. I work with my husband on memory skills, keeping him busy and small things to focus on as well as "prompting" him when its needed. We work on putting puzzles together because the biggest complaint my husband has and myself too, is that his hands aren't working with his brain at times. So I thought that puzzles or cards, might help improve those abilities. I provide routine and structure in which was recommended and approved by his psych doctor because he functions better in those types of environment. He works in the garden and we are looking into different programs for not only PTSD but TBI as well outside the VA. I have a calendar to keep his appointments on, he has a chore list and a daily task list. He writes notes to himself in his notebook he carries all the time. His medication is put out for him in a special cabinet solely for that purpose and a reminder/prompt is needed or he will forget or even better...take it twice.

So we aren't just sitting here, looking at one another while I am doing every little thing for him down to wiping his bum or breathing for him! "Dr. A" gave me an earful without asking all that I do, about how I was doing everything for him which is producing more harm than good AND a lazy husband to boot! Some of the things he mentioned must have come from someone else because it had absolutely nothing to do with us at all. Not on the tests, not in my answers, hell...not even in my husband's responses. I have to admit dear readers, I was hurt. "Dr. A's" suggestions were to let him go and make mistakes, deal with the consequences later and stop with the puzzles but pay 300.00 on college advanced courses like calculus that he can watch on a dvd on a daily basis to make him think harder. I told him nicely, that "you aren't living with him. You don't see what its like. How can you say this when you don't know the whole story? If it was this easy as walking away and leaving him be...buddy all you would see is asshole and elbows belonging to me running out the door to go back to work. I have an education that is collecting dust, and we don't like living in poverty level. Why would I waste my time helping my husband if he didn't sincerely need it?" He said "well its just lack of drive because of his emotions". Say whaaaat Doc? What the hell is he talking about?

My husband's TBI is cured/healed he stated. He had it but it has completely healed with no problems afterward. He did state that my husband's tests produced the same results as last year's so it wasn't any different which is rather interesting because last year the same results ended with a TBI diagnosis. Now that "Dr. S" gave him a diagnosis of TBI, this doctor wanted to pull that and state my husband is simply "emotional". Now here is where we are getting crossed wires and I wasn't exactly sure if "Dr. A" was understanding how he was coming across. Now I like to think that I am a pretty smart cookie. When and if I don't understand something, I research. I look at all sides and possibilities, so I wondered if my husband's PTSD was so severe that it was causing all these problems. Depression can impact a person's motivation, hell we as caregivers can testify to that right? So I asked. "Dr. A"  but he really couldn't answer me but said that emotions can cause the brain just to stop". Well, here I am looking at my husband thinking to myself, "he is so far gone that his emotions are causing issues with the brain". In this same conversation, "Dr. A" reported that my husband's left side/hand was weaker than his right which was very unusual in his opinion because my husband is left handed. My husband has no feelings in his hands so this "new weakness" really didn't surprise me any.I also noticed and reported the left side being weaker in my test as well as the noticing of him dropping things or the inability to work with his left hand.

Now while he is talking about his, he suddenly starts talking about my husband's psycho-motor skills which have "declined severely since the last test" and now they are so "severely impaired" he is concerned enough to warrant a seizure of my husband's drivers license. I sat there and my heart just dropped. Although my husband doesn't drive much, he does go up the road to a farmer's home and hangs out there with the horses etc. He doesn't drive much, because he doesn't leave much due to his PTSD. If we go out, I am usually with him and drive. The only thought I could think of was "If this man takes away this one precious little thing, my husband will kill himself". I could see it on my husband's face, the look of defeat, the look of total loss. My husband teared up and said "Sir, I have had everything taken from me. My jobs. My mind. My life, my family..and now you want to take this too? It's the only independence I have!".

I argued with "Dr. A" mostly because I was so scared that this would be the straw that broke the camel's back so to speak. I explained that my husband recently attempted to commit suicide and I felt that this would be the WRONG time to slap something so detrimental on him...I guess I hoped that he would understand the underlying plea of "please do not send him back home with me and let this be my fault and have to deal with the consequences". I argued that I drive so why not let him have this one thing to himself with the promise I would drive him where he needed to go? I also argued that I didn't understand how "emotions" impair someone so severely, that it warrants such a drastic measure? He didn't answer nor did he care too. His last advice was "I will think about my report but am putting in that he needs cognitive and physical rehabilitation.I don't know what to tell you". I kept asking to myself "Why does he need such therapy? Is that for too emotional of people?"I would have asked him but he was too busy looking at the clock and rushing us out the door.

I have to say Readers, we both left with our tails tucked underneath us. I left confused, second guessing myself , second guessing my care giving of my husband and second guessing my husband. I left feeling horrible that I just put my husband through all of is. No one is more to blame than myself.  We just wanted answers to what was going on. We know it and see it...but a doctor who doesn't know much or want to know about TBI is the one we need the answers from and he wanted to tell me how I am failing my husband? More importantly, my husband left feeling like yet another person in the VA system didn't care what happened to him or what was going on. He left in a tirade and took me quite a while to get him calmed down enough to drive him home. He now feels he is just crazy and really doesn't have anything wrong with him. He feels defeated and so do I to be honest with you.

I felt that way for 24 hours or less and did what I do back up on that damn horse and dug my heels in deeper. I first contacted our Federal Recovery Coordinators, (yes we have two now-more later on that), in which both agreed that it sounded like we were coming under fire because of this Dr's problems and I agreed. It was also noted that no one provided a TBI doctor to read the results. It felt like we were being on trial and having to justify my husband's problems that are not as severe as Alzheimer's. I talked to our Caseworker who "couldn't advise me" THEN I called a researcher at the Memphis VA whom I dearly adore and knew she would give it to me straight. Which she did. She explained to me that emotions do not cause these types of issues and when the doctor said he was healed, did I witness the parting of the waters as well? I had to laugh but she reminded me how well of a job I was doing and don't give up. That the problems he is facing is indicative of TBI and the damage is in the parietal lobe. She told me she would love to see a SPECT scan because she would bet that portion of the brain in swiss cheese holed which is sad. Surprising enough, I learned where the parietal lobe is located which is the area he hurt himself over and over again. She encouraged me and explained how a doctor gives the diagnosis of mild, moderate and severe and how even though I was misunderstanding...mild TBI didn't mean there wasn't serious issues involved. Untreated she explained, can cause more deterioration the longer it goes on. She also told me that such tests are given but it takes a doctor who KNOWS how to take the PTSD from the TBI and separate those from the answers. With a guy maintaining that ALL TBIs are just bumps, and not knowing the answers..makes me wonder if he knows anything at all in regards to TBI. She made me feel better and I thank her for that.

We met with my husband's psychiatrist on Friday who looked at me deadpan and said "Ummm PTSD doesn't cause psycho-motor skills and that is all crap". I guess I needed my husband to hear that validation he was not indeed crazy or that emotional. Maybe I needed it for myself. I did tell the psychiatrist that I felt we were under fire for my care giving and being lumped into the disability seekers that doctors want to place you in. She thought on this a moment and being the serious person she is, told me the difference between disability seekers and those that have serious issues is caring. "You care and you fight. Your husband cares because he keeps trying anything and everything...together you are fighting back..that is the difference. You aren't disability seekers, and it isn't emotional that is happening to you." as she looked at my husband. Out of all of them, they made me realize my husband just wasn't simply crazy or just too damn emotional, but it was like how do we combat "Dr. A"? I just know now that my husband is steadily declining and I am concerned. I have a clearer understanding of TBI and all that it can affect and I feel somewhat better although I am to the point now of "where to go next?"

I guess we will just keep going up because that's all you can ever do with these problems. I just wish sometimes I had the help pushing me from below upward, because sometimes I feel like the weight of the world is on my shoulders...and no one really cares about us as far as the military and VA is concerned. I noticed here recently I don't really fit in with other TBI spouses because they aren't facing the issues of the army losing military and medical records, or not receiving awards that were put in for, and even what I am dealing with on the TBI. You hate to say "Ok those with a mild diagnosis raise your hand". The ones I do know are/have been in worse shape and some I am too ashamed to ask because their husbands are worse than mine and it makes me feel weird/awkward. Who am I to complain and bitch when they are facing so much worse? My husband may not have been shot in the head or had shrapnel embedded but I understand the spouse...I get it. So why feel the need to put someone down or make sure their husbands injuries gets beaten into me every single time I or someone else mentions it to some and so nastily reminded to boot?

Was my husband hurt though in the line of duty? Yes and several times over. He still hurts just like some others. Did we both lose out as the spouses? Yes. Am I hurting like you are? Hell yes. I guess I no longer fit in because I have compassion enough to say I understand and I know you are hurting no matter who they are. There are many though who have no idea what you are going through and they simply just don't give a shit how they treat people. All the while, I keep thinking "do some of these spouses NOT remember what this feeling is like to be so alone and not know what's going on or what to do? Were they mistreated so badly by prior spouses to make them so hateful to newer spouses who have questions?" I also wonder, "how many of those did my husband save during combat, getting them out of harms way...only to have their spouse treat another fellow spouse like dirt?" I think more of the ones my husband was not able to save, and suddenly, I just have no patience for those who feel the need to grind their heels into your face and spit on you. I feel out of place because of those people and don't fit in with much of anyone anymore. It was nice to have some though that did help answer questions I have had but some of the nasty ones? Just made me feel like I had no where to go anymore. I haven't walked in their shoes so they remind me, but you know what? You haven't been walking in mine either. I didn't realize it was such a competition to play the wounded soldier's injuries as it is to some women. I have no time for that. So I figure I will keep going at it by myself and fight....fight til I got nothing left to fight for all while holding up my husband while I am doing it. I will write more later on the newest developments in our crazy upside down life but right now? I am going to walk away from the PTSD and TBI and take my children outside to play for a while and think about my next move......

Anywhere But Down,

Wednesday, May 18, 2011

On the Fly: Project Healing Waters

This week was a tough one with many obstacles to overcome and side step. One of those was getting insulted and competing with a neuropsychologist that has Alzheimer's. MUCH more on that later. One of those obstacles is trying to find something to relieve the stress and tension in my husband, as well as myself, as he hasn't been doing too good here lately. One of these "somethings" I have mentioned before, is getting involved with the Project Healing Waters organization which has a chapter here where I live and meets at our VA. After speaking a while with the State Coordinator and threatening my husband with every inch of his life about going, we attended the 8th Annual Trout Fest in Townsend, TN upon an invitation by the Project Healing Waters state coordinator, Scott Scrip and local chapter officer, "Ed". 

Now yes, I know some of you will be like, "Trout Fest? Seriously?" Yes...this star spangled hearted woman dragged her husband all the way up to the mountains! We didn't have a lot of money and was quite a bit ways up the road, but they made our accommodations for us and I couldn't pass it up. I thought if I could just get him pushed in the right direction, perhaps he will find peace in the waters. Nestled deep in the Mountains of Cades Cove, you couldn't have asked for a more relaxing weekend or meet some better people. Now what do I mean about better people? Just down to earth. It wasn't about your job, the time, the was just about getting out on the water and just fishing. I had to admire and somewhat envy people that can find peace like that and simpleness. I learned quite a bit, especially for a girl who only knows how to hold a pole and doesn't know a thing about any type of fishing! I wasn't sure on everything that Project Healing Waters did as an organization, but my husband used to be an avid fly fisherman when I had met him. After war, he just gave up all his interests and hobbies. The idea was to get him up there, spend a little time among other avid fly fishermen, and take him out on the river this weekend. So that's exactly what we did.

I learned quite a bit about PHWFF over the weekend as I voluntarily manned the booth they had set up while the boys went fishing. Founded in 2005, this organization originally began at Walter Reed Hospital as they taught fly tying and casting to wounded soldiers there on the grounds. It eventually grew into large groups including such organizations and chapters of the Trout Unlimited groups as well as the Federation of Fly Fishers. The organization made up of volunteers, teach these wounded individuals fly casting, tying of the flies and about the fish themselves and the resources found on the lakes and rivers. They can provide assistance, education, and learning opportunities as well as equipment, gear and fishing outings on some of the best stocked rivers around. So no matter the disability, they have someone to help you.

Author and Fly Fisher Joe Humphreys Teaching Fly Tying

Saturday, the first day we arrived, we were greeted and warmly so. The guys got my husband out on the water before the crowds got to be too much for him. My husband was a little agitated and very anxious, but by 4 the was like he had never laid down the pole in that short time out on the waters. While walking around and snickering over all these men comparing the size of their fly poles and bragging on their latest catch, it amazed me to be in such lovely company and how much knowledge was to be gained by utilizing our state's resources. I learned a ton just on the entomology of the rivers than I probably ever really wanted to, the right equipment and flies to get the biggest trout, but more much the water heals the persons inner being in all sorts of people inflicted with mild to serious health concerns and issues. I met veterans of the WWII era all the way down to the Iraq and Afghanistan wars there, who's only time their demons do not haunt them, is when they are on the water. It was interesting to see how many of these people just fish and how it gives them that time to be at peace.  One gentlemen told me if he could, he would fish every day. I met elderly people with health issues who seemed for that short time fishing, forget how they hurt or what parts just don't work like they used to.

I also met the group Casting For Recovery which is a breast cancer support organization that teaches fishing and helps relieve the physical and emotional pain from cancer. CFW had some great people there and I could find that talking about PTSD was relatively easy as she just "got" it. Amazing amazing stories from some really neat people. The Casting For Recovery girls make and tie their own flies then donate them to PHWFF for the wounded warriors to use out on the water so they are all somewhat connected with each other. They also get out and fish, do outings and is similar to PHWFF but for those who have cancer. I wanted to include this link because I do get from time to time emails in regards to PTSD and Cancer. Thought you ladies might find it interesting.

Hubby Fixing his Fly Vest For The Outing. He kept dropping stuff but wouldn't give up!

My husband was rather subdued when he came back off the water, in which I thought he might have been tired. It was more calm and relaxed I realized later; something I haven't seen in a very long time.We went back to our our rental cabin which to us, was more like an exotic tree house set up high in the woods. That allowed  me to relax a little in the peace and quiet. We had some time to ourselves without all the fuss of the VA, disability and the Army. I took advantage of the jacuzzi tub while my husband was out there getting his fishing gear up to par for the first time in almost six years so he could be ready for the early morning fishing trip. When I was done, I sat there from the doorway seeing him working and it brought a smile to my heart and face, because finally...we reached something of his old self even for just that short period of time. It was nice to see him finally have something to look forward to and he said to me "I really missed being out there and they showed me how to do such and such".  Like a child that learned something new, he was quite proud of himself and seemed happy. I had no idea what he was referring to, but I grinned and said "well thank the lord, cause if we don't find you something I am gonna have to get rid of you!". It was a nice evening in our tree house cabin and so peaceful, I didn't want to leave. He had some difficulty running his line, which if you know anything about fishing, is just about near invisible. He is having some issues with psycho-motor skills impairment now and weakness in his left hand, but he didn't give up. I sat on the arm of the chair and held the lines he needed to work with. It was nice to just take a breathe and not have to worry about anything over the weekend.

Fly Casting Clinic

On Sunday, we met back up with the guys from PHWFF and they took off to take my husband and two other disabled veterans to the mountain rivers for fishing while I once more manned the booth talking to people about the organization. It was nice to talk to these people because although familiar with the program, they hadn't seen the real thing in action in which I was pure testimony that "hey, they have my husband out there on the water right now". It spawned some renewed interest, volunteer interest and donations. It was pure luck that the photographer Randy Frank was there and volunteered his time, his film and his exceptional talent to catch our wounded warriors out on the river while fishing.

Randy did more than 160 shots and all of them are absolutely amazing with brilliant shots of the water and the looks on the faces of these men as they stood in that rushing river. His keen eye caught everything down from the lines whipping back and the right position to catch some of these amazing photographs. Randy came back afterward and just bragged and bragged on how well our veterans did and just made me laugh. I know that his kindness and exceptional eye for a photo, made me thankful he could document such a feat for my family. They weren't shots of the guys posing, or smiling...just photos of being out there and natural without a care in the world. While talking with me, Randy explained that the Budhist religion holds a strong favor towards the healing powers of the water. I believe that to be true. Looking at the photographs, it looked like my old husband out there. Just fishing and only worrying about the way the trout were hitting the flies. So Randy, if you read this...thank you sir for donating the pictures and your time. I know it may have seemed small to you, but you have given us a great gift and my boys will treasure those photographs of their daddy being "normal". Those are photographs of how we knew him. I know I will treasure them forever.

I worked the booth until the guys came back after lunch and met some of the more legendary fly fishers of the U.S. like "The Legend" Lefty Kreh. It was fun overall although I really worried that I would be totally out of my league there. The Project Healing Waters chapter took really good care of us and most definitely got my husband back out there and his interest renewed. We are looking forward to working with them in the future as well as going on different activities. They have several area activities coming up and my husband is a part of them. I am relieved and so thankful because this will give him some hope, confidence and some time to be at peace with the world around him. I think for the time he is out on the water, he just isn't so angry at the world or have the time to keep seeing war images in his head. He said its like having your brain cleared for a little while, and I could understand because it was there, in those photographs.

For those that are interested in the program for Wounded Warriors, just check out the link I provided to PHWFF and click on programs. You will need to contact your state coordinator via email or phone, which ever is listed and let them know where you are. They will direct you to the person you need to be in touch with. There are also chapters of PHWFF on FB as well for different states and parts of the states, if you are a FB junkie! Ours here, meets twice a month so it may vary from state to state. The OIF/OEF caseworkers should be aware of this program so you can ask them. If they don't, create the awareness of such programs like this! This way you are helping another Veteran in the process. This can be for the spouses and family is welcome, so those of you who are looking for some bonding time...this would be a great way to start.

Even if you don't know what you are doing, don't have a clue on what "flies" are and tying, you will fit right on in there...I promise. There is no cost, you don't need your equipment as they can help you with that and definitely fun! Project Healing Waters is a wonderful organization and you know I will give you the skinny off the cow if it didn't work for us. Check them out if you are a PTSD sufferer who likes the outdoors or you are just trying to find something different to tackle the demons. I know many of you readers are Veterans, its a PERFECT place for you. You got fishing buddies, who know when to be quiet and when to talk. There is no therapy/group talking, there is no VA hanging over are just being one with the elements and with others who just "know". It's worth your time to try it.

Pass this information on to others who might utilize this resource. They are always looking to open new chapters, gain new volunteers and donations to keep it going. I thoroughly enjoyed manning the booth for PHWW and just talking with folks. It gave them an awareness about our injured military personnel I don't think they knew much about. It is also very healing for me to talk about what our life is like to others and create that awareness in regards to PTSD and TBI. I may even try to cast a line or two myself in the future!

Again, special thanks to PHWFF and I look forward to volunteering my time and seeing my husband in this program. You guys made a special impact on our lives, especially since it has been so upside down and sideways here lately. It not only gave us a break, but it gave my husband a little hope and confidence again. For that, I can't tell you how much I am sincerely thankful to have come across your program.

Friday, May 6, 2011

Confessions From The Wreckage of a Tornado

Actual photo from my home

So I guess it's been a little since I have last posted.....a lot has happened since then. On April 27th, our state along with several others  in the South were hit by strong tornadoes. While you were probably seeing AL, VA and GA on tv and were high in death tolls, our small community was hit hard  and placed on the Federal Disaster declaration list by President Obama just this week. My area of the state of Tennessee was hit by eight tornadoes ranging from F1 to F3 back to back within a few hours that stormy night, three just in my area alone. While my home was by, the grace of God, spared.....157 of our small town residents lost everything they owned including dairy farms and farms period. Being a part of the EMS and Volunteer fire family pre-war, I pitched in where I could since last Wednesday helping to comb through our friend's and neighbor's debris of what once was their homes. Some of my husband's past co-workers/friends were among those homes that were lost. While my husband still had bitter feelings that no one helped us, when we needed them save but two...I didn't want to think that way as we are better than that.

I knew better than to be out there stepping on broken toys, bits and pieces of homes, and chided myself the whole time because I knew my mental stability probably could not handle such destruction and devastation. We have never been hit by tornadoes here and the last thing I can think of was my husband telling me before it hit was  "Baby, don't worry...we never get them out here below the valley. Those mountains cradle us and it would have to jump some high ridges to get here". Well, that's exactly what happened. It jumped those ridges like the hounds of hell were on its tail and battling to see who was coming in first. I knew I probably couldn't handle such things as I drove up the road, I teared up and had to cuss myself to straighten up before I got out of the car because why did I have a reason to cry? It missed our road and hit the road next to us. Quit being a puss I told myself over and over again.

A lot of emotions rushed through me out there listening to the silence and the wind blowing. It wasn't just the thought of "Oh my God..that could have been our home scattered over a five mile radius", but other thoughts  too. My mind was going off constantly and no matter what I did...I couldn't get it to turn off. Being the too big-hearted person I am, I jumped in, in search of anything salvageable. The mistress was on a mission and I tried, God knows I did. We looked for several hours for photographs, purses, prescriptions, titles and home deeds. Nothing. There were complete trailer frames bent and shifted into the size of a dishwasher. I saw women sitting in what was left of their yard, on the ground, heads held by their hands sobbing. There was no home, there was just nothing there. I experienced the choking down of sobs from an older gentlemen when I located his mother's antique postcard album she collected. All I could do was keep scrubbing off the mud and cow manure it had landed in, in hopes that maybe I could wipe away his pain. I walked where people had died and their bodies removed the day before. In all this, I could hear the crying of children blowing in the wind, and saw first hand the sure force of what Mother Nature can do to us all.

 To be sifting through all of that, and crawling through wooded areas where most of the homes ended up in, in small pieces...I kept trying to choke back the tears and not sob myself. I kept swallowing and swallowing it and it got to the point I just couldn't even breathe anymore out there. I literally panicked. I couldn't handle all of it and I wanted to run. I must have drove down to my home like a  bat out of hell. I came in, I got rid of the clothes, I scrubbed myself raw in a hot shower and sobbed. While my heart was breaking for those victims of the tornado, I was more angry. Yes, angry. Angry at God, angry at my husband, angry at myself, angry at the world, angry at everything. Just pure anger radiated off of me and then the shame set in. I panicked out there because I was thinking the whole time out there sifting through debris... how normal I felt.

Yes. Uncle Sam's Mistress felt normal in all the loss, destruction and heartache. What the hell is wrong with me? How sick and twisted have I become to feel that way? After I got out of the shower, my husband asked me if I was ok as he said I was pale as a ghost. I couldn't even talk to him and just went outside to sit by myself. I sat for a long time after talking to my mother in law on the phone and thought about everything. It didn't really sink in but I knew what I was thinking. I felt ashamed. I felt like I had literally just invaded those poor people's space, and couldn't feel heartache or shed those tears for them. No matter how many times I said to others "I am sooo sooo so very sorry", it didn't take their pain away. It felt hollow and insincere to me. Those words didn't mean anything to them or make it better. I wanted to feel something, I wanted to feel sadness and their heartache and instead...the Mistress felt normalcy.

In amongst the broken plates and shredded teddy bears, all I could think about was "no one really knows my family. No one out here knows my husband has such severe issues. No one will treat me differently or look at us like we have some God forsaken disease. No one will give us that "oh here he comes" look. No one will talk behind our backs because we are out here helping them. Maybe just maybe, they won't find out. I won't have to talk about the VA, or social security. I won't be asked how is it going when they really don't care but just trying to make polite small talk..maybe just maybe the next time I need help one of them will answer or pay it forward". It was just normal. It was me, out there giving a helping hand to my fellow neighbors and friends like my parents taught me to do when people are in need. I just could not cry for them. I could not cry for anyone but just myself because for that little was just me being normal me.

I was doing what I needed to be doing and have so much heart to give, but it seems the world has revolved around PTSD and TBI for the last four years. Our friends have turned their backs on us, past co-workers can't even look us in the eye anymore, and some of my family members telling me I need to cut my losses and file for divorce.It wasn't like that at all being out there with these people. They just needed help, sets of eyes to search and helping hands. I was fine for a while. I walked and walked, pulling up insulation, boards and ripped up floors searching frantically for anything. Then a gentleman who had also lost his home stopped me and said "Young lady, there is a cooler over yonder with cold water and I got coffee the Red Cross sent over. There are sandwiches too. You stop for a minute and help yourself." 

I stood there and all of a sudden, I couldn't breathe. At all. The world spun, there was silence and I just absolutely freaked the hell out. Here I was, I realized, in the midst of all of this and how dare I be thinking how normal I felt for just that period of time? I must have stared at him for a moment and think I mumbled a  thank you sincerely but I didn't deserve that man's cold drink or coffee. He just lost everything. His home, his cars, his farm and yet...amidst it all, he offered me something. I suddenly had to leave and come home. Like a dog with it's tail tucked between its legs, I came back to my PTSD inflicted refuge here at home and haven't left since then but just today other than to take my sons to school.

It's been eating at me since middle of last week. It has plagued me like I had committed the most offensive thing a human could ever commit. The act of selfishness. I realized over the weekend....I just have no compassion left. At all. I want to hurt, I want to be saddened, I want to cry and feel everyone's pain but am just incapable of it. Hell, this is a woman that cried over sappy commercials and sobs through love stories and movies! When my Veteran tells me I don't understand or have no clue on what it feels to not feel anything at all...I beg to differ. I do know. First hand...Living with PTSD and TBI has taken everything that was in me and turned it upside down.

So rather than be out there, I turned to my fellow Army wives on facebook and other places from my safe haven as I know it.  I knew that some of them could help me help these people especially since Red Cross was so small grouped. It took several days to even get people in here let alone start helping them get their lives back and cleaned up. My fellow Army wives have made me so proud and a group that I will forever be grateful to be a part of because they came through. All week this week, boxes from all over the United States came in filled with clothing, infant items, toys, books, personal items and gift cards for us to take to not just our friends, but to many many others.

We don't have a lot of money but I wanted to still help somehow. I reached out to these other spouses, asking for help and they did. Maybe it was to make up for my abrupt leave and selfish thoughts. Maybe it was to help me find my missing compassion in those boxes the ladies had sent to me to give out...maybe it was just a way to keep myself busy here so I wouldn't have to face those people that lost everything. Maybe just maybe it would make up for the horrible things I thought while out there and my selfishness. When you read about compassion fatigue or such things on other sites, you really kind of catalog it in the back of your mind for future reference. Now I think I have, in the past four years...lost my compassion period. I am not tired, it's just gone.

While I have been reading these stories of suicides and attempted suicides among caregivers/widows this past week, my heart did break because I thought those poor souls just could find no other way. I can also see why some Veterans look to that as their only way out. PTSD can be just as destructive and devastating as tornadoes can be on land. It will suck you up, twist and turn you, ripping you into shreds and drop you head first to the ground. All you can do is really hold on tight, and pray to God that you land on your feet. On Monday, the VA will start the application process for the Caregiver program which I think will have a lot of hidden "BUT's" in the qualifications. All I can think of is how this will really help me. How will this really help us to help our veterans cope with all they go through. You have these people that are sitting behind the safety of their desks thinking they got it all figured out. Print out another damn brochure, fill it with some empty words and educated guesses, and then fill us with pointless programs and worthless promises. Those brochures and failures of what little programs are out there for us, are similar to that of a tornado warning where you learned to go to the hall, get on your knees, crouch and cover your head. When push comes to shove, no matter how you try to prepare or what little you were ain't gonna help you that much if and when it hits.

I hate what the war did to my family, my husband and to me. I hate that I have lost my will to be compassionate. (Boy, wouldn't a therapist have a field day with me!) With the death of Osama Bin Laden, it should have been joyous news and it was just another bittersweet moment here. I couldn't rejoice, I couldn't say "Yay the bastard is dead"...all I could think of was "how much will this trigger much hell is this going to put on my husband and then me?". Most of the time, all I can do is grab my and cover, and ride the storm out.

This post probably didn't make much sense and my point probably lost in all these words...but I felt the need to confess and not sure how to find lost compassion or even where to look. Perhaps someone out there will find my words comforting and not judge me for all of this. For my Army wives who answered my call for help, you did more than just clean out closets or go to the store to purchase items. You helped some families that were awaiting help that came late, and most definitely will make them smile and relieve them of some stress.....most of all you helped me find some peace in my tortured and confused soul this week. I love each one of you very much and proud to call you a friend.

Still Riding Out The Storm,