Saturday chores – a-la tbi

I was feeling so great yesterday… by the end of the day, that is. I got up around 7:30 and got to puttering and blogging… writing and thinking and doing some extra needed maintenance on the blog. My upstairs study has devolved into a general holding tank for all kinds of crap I can’t figure out what to do with, so I steered clear of it and used the computer downstairs to do my blogging.

I needed to run some errands in the a.m. — pick up a package and mail out important things at the post office, buy a leaf blower, deposit a check at the bank, pick up milk at the store, and then come home to take trash to the dump and get some other chores done around the house.

I really needed to leave the house by 10:30 in order to get everything done on time. But the time got away from me, and at 11:04, I found myself pulling the car out of the garage, wondering how the heck I was going to get into town in less than an hour — the post office — the main place I needed to get to — closed at noon, and traffic was bound to be really slow, due to everyone milling around, trying to line up their lives before the Thanksgiving holiday.

I decided to take the freeway, instead of secondary roads, to get into town, and I was able to reach my destination with 9 minutes to spare. That was all I needed — and thank heavens for the upcoming holiday, as a lot of the college students who usually leave their errands till the last minute on Saturday and hold up the lines at the post office, were probably either headed home for Thanksgiving or off doing something else.

So, I did everything I thought I was supposed to do, I got myself something to eat, and then I hopped in the car and headed home. Again, I was late — the dump closed at 3:00, and I had all of an hour and a half to get to the bank, stop off at the store to buy milk, and head home to take out the trash.

I hauled ass back down the road, a little spacey and out of it — I was feeling foggy and not entirely with it — and I was losing track of what I was supposed to be doing. I managed to deposit the check in the bank and pick up milk and look at a leaf blower at the hardware store… and I was on track to make it home in time to bag up trash and haul it to the dump. But then I realized that I’d forgotten to mail out the stuff that was time-sensitive — part of the reason I’d gone into town, in the first place was to get the stuff mailed out that day!!! And now all the local post offices were closed for the weekend. Ack!!! Well, I couldn’t worry about it. I dropped the stuff in a box at a nearby post office, noting that it would all go out at 6 a.m. on Monday, so that was almost good enough. And I made a note to make notes to myself and follow them, when something was important.

I did manage to get back to the house in time to take the trash to the dump. But then I realized that I had really needed to purchase a leaf blower, not just look at it. I guess I had used my time okay earlier, because I had at least found where the leaf blowers were in the hardware store, which is sometimes half the battle, and I’d managed to price them and found them cheaper than I’d expected.

So, after I got the trash to the dump, I drove back to the hardware store, pulled the leaf blower off the shelf, and went looking for an extension cord. The associate who helped me pick out the right extension cord was helpful, but I didn’t understand everything they were saying to me… I sort of went by their tone and nodded and smiled and repeated what they said to me, to make it sound like I was following… then I hauled it all to checkout, credit card and rewards card in hand. When the clerk input the amounts, I realized that the extension cord was almost as expensive as the leaf blower — it was an 80-foot heavy duty cord that I’m sure will be fine… as long as it doesn’t blow the fuses in my house. I had tried to see how much it was, but I got confused and thought it was $19.95 — it was almost $40. Holy smokes! I guess I’d better take good care of it… I didn’t have time for the price change to register — if I’d had time and I’d considered that I needed to really watch my spending, I might have told the clerk to take the extension cord off, but I ended up just going with it anyway. I’ll probably get plenty of use out of it, and I need a good heavy-duty cord, anyway, so I can’t worry about it.

The hardest part of the visit to the store was dealing with the credit card payment. It should be easy, right? But there were lines all over the screen, and I had a dickens of a time figuring out where to sign my name, and then were to tap on the screen, after I was done signing my name. It took me a couple of tries, and the clerk had to tell me how to do it. But at least I used the stylus instead of the pen I had in my hand. And when all was said and done, I had a leaf blower and new 80-foot extension cord in the back of my car.

When I got home, I was so tapped, I just took a shower and fell into bed. I hate being so easily fatigued, and I wanted to spend some time in the afternoon using my new leaf blower, but it was not to be. Plus, the wind was up, and there were so many friggin’ leaves, it tired me out just looking at them. I didn’t want to push it. I’ve been feeling like I’m coming down with a cold, and I didn’t want to stress myself any more.

I wasn’t able to sleep the whole two hours I was intending to. About an hour into my nap, I woke up suddenly and started to cry. I hate when that happens. And it’s been happening a lot, lately. It often happens when I’m either freshly rested or I’m over-tired. Fortunately, I’m usually alone when it comes over me — first thing in the a.m. while I’m getting ready for work, when I wake up from a nap, or before I fall asleep at night. I can’t stand crying with other people around me. I feel weak and pitiful and self-conscious. But when I woke up yesterday, I was all alone, except for one of my cats, so I had a little cry and released some of the pressure of this time.

Thanksgiving is the anniversary of two of my past tbi’s (1995 and 2004), and I experience a deep sense of loss that I can’t always put my finger on, around this time. It’s also the time of year when I started to really realize and come to terms with the various losses I’ve sustained — the jobs, the relationships, the financial security — and it’s when I was first able to really look at the impact that tbi has had in my life, ever since I was young. It’s a time when I face all the more closely the loss of my dreams, the loss of many of my fondly held assumptions about what I am capable of doing and what I can safely attempt, the loss of the person I once was… not to mention the person I mistakenly thought I had been (but never truly was). Thanksgiving can be a very hard time for me, so I have to cut myself a break and just let myself cry when I need to cry.

Last night was a little difficult — lots of agitation coming up, lots of resentment and stress and breakdowns in communication and bad timing. But by the end of the evening, I had regained my footing and relaxed into a children’s movie that — while a little simplistic and not quite believable in places — still didn’t have the rough language, sex and violence that tends to upset me.

All in all, forgetfulness and backtracking and confusion notwithstanding, I did manage to get many of my chores done. And today is shaping up to be a nice day, so I can continue with the theme and hopefully fire up that leaf blower.

Note to self: Read the manual and double-check everything, so you don’t blow the motor or screw up the apparatus before you get started. I don’t want to wreck my latest power tool, like I did my chainsaw – which I totally hosed because I used it a bunch of times without ever oiling the chain. (In case you’re wondering, that’s a bad thing and leads to malfunction — never a good thing with chainsaws!)


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A picture of what happens to me when I’m “not listening”

I call what happens to me “stovepiping”.
stove-pipe thinking

The blue lines represent my thinking process.

The pink lines represent the rest of the world.

The orange lines delineate what I call ‘the social layer’ of interaction — the place where people process information together.

This is not to say that I think the rest of the world is superficial or not as “deep” as me — it’s just an attempt to show how I tend to stray outside the social layer to think things through and process information, while the rest of the world goes on without me.

While people are talking and interacting, I can get overwhelmed, so I have to “step away” mentally and go off into my own space to make sense of what’s going on around me. I get very involved in a specific thing I’m thinking about… Sometimes it takes me a while to really get my head around what’s going on in the general vicinity, so I go into what I’m thinking about very deeply,

Meanwhile, the rest of the world around me moves on and (as far as i can tell) just disappears. They are interacting at a level that I find overwhelming and confusing — especially if I’m tired.

The more difficulties I’m having with parsing out all the stimuli around me, the deeper I go into the “stovepipe” of my subject, and the farther away from the rest of the world I get.

So, when someone tries to get my attention (from what seems like a very far distance), it can take a while for the communication to get to me. I’m going to draw a picture of the process, because it’s getting hard for me to put it into words, exactly.

I think a lot of us have this… tbi or not. The more involved we are in the things we’re thinking about and/or involved in, the more distant we can become towards the rest of the world. I think the difference between neurotypical folks and tbi or other “neurodiverse’ folks is one of degrees.

A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.

What happened in the field that day

Here’s what I remember:

I was about 8 years old and I was playing up at a field near my family’s house. I was with my younger sibling. The field lay right between two different neighborhoods, and we never went into the other neighborhood by ourselves. We rarely went there at all, period. We were playing about 50-100 feet from the entrance on our side of the field. The line of garages that flanked the alley on the other side of the field were behind us, and we were facing the direction that our one-way street went.

The field was bounded on the other side by a high (maybe 20-foot) chain link fence, and our side was the only “real” entrance to the area.

My sibling and I were there by ourselves for a little while, then two kids appeared on the other side of the field. They crawled under the bottom edge of the fence, slipping through a depression in the ground and looked over at us.

We looked over at them — I’m not sure if we called over to them and said hello. I’m not sure if we even acknowledged their presence.  I suspect we didn’t. The kids weren’t supposed to be there — they had crawled under a fence that was built to keep them out, after all. As I recall, we decided to mind our own business and keep playing.

The kids called over to us a couple of times, but we ignored them and just kept playing. Then they started yelling at us — calling us names. We didn’t respond, and after a while they started throwing rocks at us.

At first the rocks didn’t fall very close to us. It was a bright afternoon, and we wanted to play. We decided we were going to stay put. My sibling wanted to go home and pulled at me to go back home. But I said we needed to stay. Or maybe I just thought that, and my sibling just went along with me. Our dad was really into standing your ground and not backing down from your position, if you were threatened, and I wanted to make my dad proud of me and not give in to bullies. I remember the thought going through my head, that we needed to stand our ground and not just run away.

Several rocks fell closer and closer to us. I think the other kids threw 3 or 4 rocks before they got close. While they were throwing the rocks at us, I remember them laughing and urging each other to get closer. I remember focusing on just ignoring them and not being intimidated by them. It didn’t occur to me that I could be hurt — or maybe I didn’t care?

After a number of times of trying to hit us, they succeeded. I remember the distant feeling of a rock hitting my head — then everything went dark.

The next thing I remember, was looking up to see my sibling sitting beside me, crying. They hovered over me, tears streaming down their face, looking terrified.

I remember being really dazed and foggy as I came to. But I did finally know we needed to go home. The kids on the other side of the field were laughing and cheering that they’d hit me, and when we left the field they were jeering at us. I remember feeling like I’d failed, like I’d given in to being bullied, and I was really disappointed with myself.

I recall being wobbly and woozy on the way home, and my sibling was very upset and crying the whole way there. I was embarrassed by the display of emotion. I wanted to be stoic and take it like a grown-up. I didn’t want to be injured. I didn’t want to be woozy. I didn’t want to be wobbly. And I certainly didn’t want to cry.

When we got home, I remember my sibling telling our mom and dad what had happened. I was embarrassed that I’d been hurt and needed attention, and I was upset that I worried them. I remember Dad telling me to lie down on the couch, and he looked at my head — I don’t remember bleeding — but I recall that I did have a huge lump on my head.

The bump on my head was above my hairline, which made it difficult for my mom and dad to see where I was hurt. The bump was pretty prominent, and they got some ice to put on it, which hurt, because the edges of the ice cubes were hard and felt sharp. I really just wanted to not attract attention and not be fussed over. I just wanted the whole experience to go away, so  wouldn’t worry everyone. My sibling was so upset and crying, our mom had to take them out of the room and get them away from me.

My parents called a friend of theirs who was a registered nurse, and she told them to get a flashlight and check my eyes for any dilation. I seem to remember something about them not being sure if my pupils were dilated or not, but in any case, they had me lie on my left side, facing the back of the couch, and put ice on the bump.

I remember I was so tired, and I wanted to sleep, but my dad made sure I stayed awake. I remember him looking in my eyes several times to see if I had a concussion, and both my parents discussed whether or not I should go to the hospital. If I remember correctly, my dad said he didn’t think I had a concussion, so they didn’t take me.

Things were very foggy for me, after that. And I recall not being allowed to play much, in the coming days.

It wasn’t long after that, that I noticed that the moon was double, when I looked up at it, at night. When I told my parents this, they were alarmed and took me to the eye doctor.

Wrong doctor, I think…

Temper, temper…

I’ve been checking my stats and seeing what search terms people are using to find this blog. “Temper” is a popular one. TBI and temper issues often go hand-in-hand… and for me, it’s been one of the biggest hurdles. I’ve lost jobs and burned bridges over temper outbursts. I’ve gotten into hot water all my life, because of my temper — starting with my parents, who really came down on me very hard for ‘not being able to control myself’.

If they had known that my falls and getting knocked out by that rock didn’t help matters, they might have been nicer to me. But they weren’t. And I was convinced all my life — till a year ago, when I realized that my multiple tbi’s had affected my cognition and behavior — that I was a BAD PERSON who wasn’t entirely fit to be around nice people.

You know what? I wasn’t BAD. I was INJURED.

That doesn’t excuse my behavior, of course, but it explains it. And knowing now that aggression, hostility, rage, temper outbursts, emotional volatility, and impulse control often go hand-in-hand with brain injury — be it mild or moderate or severe — helps me manage myself in ways that keep me and others safe from my outbursts.

So, what do I do about my temper (which has caused me to break many things, lash out, even physically assault people, to the point where I once had a restraining order against me)?

First, I remember that my tbi’s have affected my reasoning and the way my brain reacts to the world around me. I remember that there are mechanisms deep in my brain that react on a very primal level to perceived threats. There’s the amygdala, which is the fight-or-flight switch that seems to work in overdrive with me. And there’s the limbic system, which is about emotion. And then there’s the parts of the brain that control impulse, which are around the area where I got hit in the head (and knocked out briefly) with a rock, when I was eight. People used to believe that when kids’ brains were injured, they recovered better than adults, but now they’ve realized that if you injure a young brain, it affects how it develops for the rest of the child’s life.

So, I try to stay objective, and remember that my brain doesn’t work the way I really want it to.

Next, I try to stimulate my parasympathetic nervous system — the counterpart to the sympathetic nervous system — to chill everything out. The sympathetic nervous system, as I understand it, is the source of the fight-or-flight response that’s making me react so intensely and act out. So, to calm my system down, I need to trigger the parasympathetic system. I’ve been taught that deep breathing causes the lungs to expand, and when they press against the inside of the ribcage, it stimulates the parasympathetic system, so I try to breathe deeply and feel my lungs filling with air and pressing against my rib cage. Also, counting my breaths gets my mind off the turbulence and forces me to focus on something other than what’s pushing me over the edge.

I also rub my neck near the jugular vein — there’s a nerve in there called the vagus nerve that triggers the parasympathetic nervous system. It’s a huge nerve that runs through our whole body — look it up online for more info, as there’s more to it than I can come up with at this point — and one of the treatments for epilepsy to keep people chilled out and reduce danger of seizures, is actually to surgically implant a vagus nerve stimulator in their body. I’m not keen on the idea of having something implanted in me. I’d rather just massage my neck on the right side — but gently, as I’ve heard stories from doctors and nurses about people knocking themselves out by massaging it too hard.

Bottom line: I actively try to stimulate the part of my nervous system that’s built to chill me out. We all have it. We can all use it. And I do.

If this doesn’t work, I try to get my mind off things by doing something. I take a walk. Or I work in my workshop. Or I write something. Or I draw something. It doesn’t have to be perfect, but it needs to be active, and I need to really concentrate while I’m doing it, so I redirect that wild, primal energy/rage/agitation into something productive. Sometimes, I’ll clean my study, which gets to be a total wreck, at times.

I try to get my mind off things that were making me crazy, and do something  positive with my energy.

If all else fails, I remove myself from the situation, if I can, and take a breather. I physically exit the area, and I pull myself together. If I cannot stop the rush of temper with people I do NOT want to hurt (and I really don’t want to hurt anyone), I just walk away and gather myself. I give myself a talking-to. I don’t drive when I’m in that kind of a space, but if I can go into another room and close the door and have some quiet time in a darkened room, I do. I try to stop the cascade before I do/say things I cannot undo or take back.

I try to protect the ones I care about by removing my malfunctioning brain from their presence.

Most of all, I try to not judge myself and be too hard on myself. I’m a long-term multiple mild traumatic brain injury survivor, and the fact that I’m still here means I’ve done something right. I try to learn from my experiences and keep an eye out for things that may cause problems later. I make amends, whenever I can and should. And I do what I can to atone for the things I’ve done that hurt others — without my intending to or wanting to.

I have to remember that I am a good person, but my brain does not work as well as I want it to, and if I had total choice in the matter, I would definitely not do the things that my brain is prompting me to. This is not an excuse for bad behavior. It’s a warning to myself of what I have to pay even more attention to, so I can live the best life possible and, wherever and whenever possible, do no harm to others, but help in any way I can.

Not all of these approaches work 100% all of the time. And I don’t always have the presence of mind to do them when I should. But these things have worked for me and my extreme and volatile temper.

They might work for you, too.

Good luck!

TBI self-assessment challenges are a biggie

Imagine, if you will, you’ve got serious issues in your life with job responsibilities, personal interactions, private relationships, and generally getting by in life. But your problems start at the very place you depend on, to understand your situation — your brain. In particular, the parts of your brain that are in charge of logical thinking, monitoring your behaviors, interpreting external stimuli, and controlling your impulses and reactions to the world around you…

Welcome to the world of the TBI survivor.

It’s a troubling and problematic issue, this post-TBI condition. I mean, how much more convoluted can you get? The very part of you that you depend on, to determine how well/ill you are, is more compromised than it can imagine. And the people around you may not even realize it, so trying to explain your situation to people who don’t “get” your altered cognitive state can even reinforce the mis-conception that there’s nothing wrong with you… It can be very frustrating and crazy-making.

And it’s pretty much where I am, these days.

I’m telling people close to me about my TBI, one at a time. But they have to be very close. And I need to feel safe telling them. It’s a tough one, especially considering that they don’t have a lot of information or experience with TBI, and it scares the be-jesus out of them to think that I’m not the person they thought I was, all those years.

Well, I wasn’t the person I thought I was, all those years, either! 😉

I’ve had two different kinds of reactions:

  1. Disbelief — I can’t believe it! You don’t seem brain-damaged!
  2. Denial – That can’t be! You can’t be brain-damaged!

It’s because they love me, I know. They hate the idea that I’ve sustained an injury of that scope. And the fact that it has to do with my brain — it absolutely freaks people out, when they think about something going wrong with your brain — such a new frontier, such an integral part of our lives, such a mystery, and the prospect of something going wrong with this mysterious and essential part of ourselves is so terrifying for most people, they cannot possibly respond in a constructive manner.

They just have too much fear. And ignorance. And they cannot deal very well with the idea that there’s something really wrong with how my brain works.

In the face of their incredulity and ignorance, I withdraw. I don’t do well with people telling me that what’s going on inside my already struggling head just isn’t the case. I know people are trying to protect me (and themselves) from a “terrible” fate, but being told that what’s taken me 35 years to figure out, is just plain wrong, is not helpful.

So, I turn my attention to what’s going on inside my own head – to the best of my ability, that is. I pull myself away from those folks and do what I do best — look to my own resources and go online to research self-assessment and self-awareness in TBI survivors. What I can’t find in person, I can find online.

I really need to pinpoint the issues I face in a productive and constructive way. So, I’ve been reading about self-assessment in brain-injured individuals, trying to figure out ways to be adapt to this condition and live my life to the fullest. I can’t be held back by this state of mind. I have to develop ways to work around what I cannot do, and figure out what I can do. I need to understand self-assessment and self-awareness issues from the inside-out, from top-to-bottom.

I’ve come across some good reading, and I think I have some good ideas.

Reading List

Strategies

  • Write ideas down and review them before “floating” them with others. This lets me get clear — on paper — about my ideas before I open them up to others, and it lets me edit my “content” before it goes in front of critics — even well-meaning ones — who may (will) find fault with my ideas.
  • Actively plan and prioritize my days. My over-eager brain tends to get turned around about what it cares about and what’s important. I may start out the day planning to take care of my banking, only to find myself drawn into re-compiling my personal e-mail contact list. I have only banker’s hours to get my banking done, and I can do my e-mail list-keeping anytime, but my brain — if it’s not directed with clear priorities — can forget that I’m time-constrained and I can lose days of productive opportunity, while I’m fiddling with my computer. My brain also tends to get “sucked in” by one exciting (but transient) idea after another, seemingly without rhyme or reason, but with frustrating results. An activity like researching songbirds of Idaho may seem very important to me, one day, may not be that important, the next. But I’ll spend all day working on one idea (like researching songbirds) that doesn’t have “sticking power”, then move to another (like tracking NASCAR results for the past 10 years), then move to another (like identifying number patterns in the last two years of Big Game lottery results), then move to another (like healing family dynamics trauma)… until I have started a whole lot of things and not finished any of them. Planning and prioritizing and sticking to my structure keeps me on target. And makes sure I get to the bank on time.
  • Keep a journal… and recap frequently. This lets me “blow off steam” and wax eloquent about things I care deeply about, without allowing them to derail my entire day. It also lets me see where my thought processes are going, and it lets them just “go there” without investing a whole lot of active time and energy in exploring them. For example, I became convinced, two years ago, that I wanted to become a massage therapist/bodyworker. I had this intense desire to learn the inner workings of the human body, so I could use it for healing work. That lasted about a week. I wrote about it in my journal, and I gave my mind free rein to “experience” being a massage therapist in exhaustive detail. What I realized is that the idea that my mind thought was fabulous, was onerous to the rest of me. My brain thought doing body work on others would be a good path. My body and heart and spirit actually disagreed… I’m not the kind of person who does well with a lot of folks with physical ailments that need to be addressed. And when I went back to my journal and re-read the pages, I could see what my thought process was that convinced me that I’d “found my true path” to massage therapy. Seeing that thought process in place, and realizing just how off-base I could be about things, was a sobering reality check. And it a highly valuable lesson in seeing what my brain is capable of telling me.
  • Read the stories of others like me. This is a huge one with me. Because I sometimes cannot even see what’s happening with me, unless I see it mirrored in others. So, I look around online for people who are writing about TBI. Or I check out books from the library. Of course, there’s the danger that I’ll over-identify with people who really aren’t anything like me. But reading about others’ struggles and successes with TBI and other neurological challenges can be tremendously helpful. It also helps to keep a journal about what I read, so I can compare my own notes with what I’m reading. I have to be careful that I don’t internalize information that’s not pertinent to me, but when I find info that does apply to me, it’s priceless. Now, one of the problems with reading TBI stories is that people appear to often lose steam talking about their situations, so you don’t get the whole picture about them. Especially online. I think that people start out with great intentions and want to pass along their experience, strength, and hope, but they either get overwhelmed, they lose their focus, or they don’t get the kind of feedback they were hoping for. Or they get too much — and they get overwhelmed, which is what can happen with me. It may happen to me, yet, with this blog. Who can say? All I can say is, it’s not always easy to find online long-term, in-depth accounts of living with TBI.
  • Be humble and honest and a bit agnostic. I always have to remember that I could be wrong about a lot of things, and I don’t dare kid myself. I have to be 100% honest with myself — not as honest as I want to be, but as honest as I must be. The minute I start lying to myself intentionally, I know I’m in trouble. Because even when I’m being as honest as I can be, I may be wrong. So, lying undermines my already tenuous grip on “reality” even more. This is especially important with my family and closest friends. I have to be honest with them about myself and my abilities, even in the face of their fear, anxiety, panic, frustration, denial, etc. If they can’t be 100% honest with themselves about me, I have to take the lead and show them how I do it. I don’t always succeed as well as I’d like, but I have to model a brazen sort of fearlessness with them, so they can see that truthfulness is possible, even in the face of such a tricky condition.
  • Find support from capable folks. Having a counselor or therapist is hugely helpful, and they can offer you more objectivity than emotionally invested family members. It’s their job, after all, and they’re professionally trained. Having support — from a counselor or support group — takes the pressure off your loved-ones to be your “everything” in overcoming TBI. And having someone available to do a reality check (in a safe, supportive environment) on a regular basis can go a long way towards building self-assessment skills.

Yes, self-assessment and self-awareness challenges are big ones. For me and other TBI survivors. But because others often know so little about us and our condition, we have to learn to do a lot of it ourselves. But having external tools like journals, priority lists, stories of others, willingness to be honest, and the input of outside emotional/psychological supporters, can go a long way towards helping a TBI survivor improve their self-assessment skills.

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So, what IS a traumatic brain injury?

From the Brain Injury Association of America’s website (http://www.biausa.org/aboutbi.htm)

A traumatic brain injury (TBI) is defined as a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. Not all blows or jolts to the head result in a TBI. The severity of such an injury may range from “mild,” i.e., a brief change in mental status or consciousness to “severe,” i.e., an extended period of unconsciousness or amnesia after the injury. A TBI can result in short or long-term problems with independent function.

The blow or jolt can come from a fall, a car accident, an assault, or a sports injury, and to put things differently from what’s shown above, one person’s life-altering jolt is another person’s insignificant bump. The effects of a blow or jolt depend on the individual, and an impact that may not affect one person that intensely may completely disrupt the life of another person. It’s all very individual, and assessing the damage and addressing it is still a somewhat imprecise science.

The Journal of Head Trauma Rehabilitation, 8(3), 86-87. defines a patient with mild traumatic brain injury as:

[S]omeone who has had a traumatically induced physiological disruption of brain function as manifested by at least one of the following:

  1. any period of loss of consciousness;
  2. any loss of memory for events immediately before or after the accident;
  3. any alteration in mental state at the time of the accident (e.g., feeling dazed, disoriented, or confused);
  4. focal neurological deficit(s) that may or may not be transient but where the severity of the injury does not exceed the following:

a. loss of consciousness of approximately 30 minutes or less;
b. after 30 minutes, an initial Glasgow Coma Scale (GCS) of 13-15; and
c. posttraumatic amnesia (PTA) not greater than 24 hours.

So, if you’re like me, and you had a blow to your head that caused you to lose consciousness for less than 30 minutes… or even if you were “just” foggy and disoriented and confused after the impact, you may have sustained a mild traumatic brain injury (MTBI).

Just because the injury was mild, doesn’t mean the after-effects are, however. A seemingly insignificant blow to the head can turn your life upside-down and keep you from living fully, year after year, after year. And if the nature of your problems and the severity of them is never fully assessed or understood, the effects can be personally, socially, financially, and spiritual devastating.

Part of the problem with mild TBI, in particular, is that the effects can be largely emotional and behavioral (and thus social) in nature, so they can be interpreted as being “emotional problems” or “mal-adjustment” rather than a legitimate physiological problem. And so the issues can go unaddressed and minimized by folks around the TBI survivor, while the survivor suffers in silence and soldiers on valiantly in isolation, swimming in a sea of mis-information that tells them there’s something wrong with their character, their intelligence, their spirit… when it’s really their physical brain that’s having the issues.

The emotional fallout can be crippling. Living your life alone, isolated, feeling defective, and not knowing why… it all takes a toll. Being unable to sustain meaningful interpersonal relationships because of demons with no names and no faces… unable to hold down work for extended periods of time because of limitations you cannot identify or address… locked away in darkness and silence because people do not know the nature of your difficulties, and the part of you that would normally be able to identify what’s wrong is the very part of you that’s injured… the constant drip-drip-drip of erosive confusion and mounting insecurity and self-doubt undercuts your ability to function in profound and seemingly irreversible ways, turning you into a shell of what you once were. For no apparent reason.

It makes me wonder how many people are living marginal lives, unable to live up to their full potential, because of undiagnosed TBI. I know I have been. And I know I’m not alone.

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Greetings from inside my unusual head

Well, this is it, then. I’m actually going to do this thing called “record my experience as a long-term traumatic brain injury (TBI) survivor.”

Who am I? I’m a TBI survivor who’s extremely high-functioning. So high-functioning, in fact, that people just cannot believe that I’ve actually sustained a traumatic brain injury. I don’t “present” (as they say) as someone who’s been hit on the head. I’m quite intelligent, if I say so myself, I’m deeply curious about the world around me, outwardly, I’m socially engaging and interpersonally adept… and I’m really, really good at hiding the fact that 35 years ago, at the age of 8, I was struck on the head with a rock, knocked unconscious briefly, and then changed unalterably in subtle and confounding ways that were either interpreted as “behavior problems” and “just being difficult,” or I actively hid from my parents, siblings, friends, classmates, colleagues… the whole world, in fact, because if I let my shortcomings show, they’d land me in a whole lot of hot water.

What a long, strange trip it’s been, truly.

What’s even stranger is that, not until six weeks ago, did I even realize that the source of so many of my problems tracked back to a TBI. Shortly before Thanksgiving, I was laid up with an upper respiratory infection, thinking about how my life had shaped up till that point. It’s a long story, getting from being head-injured at 8 to that few days of lying in bed with a notepad and antibiotics, but long story short it finally dawned on me that the cognitive and behavioral issues I’d been having all my life were, in fact, very real. And they couldn’t be easily explained by psychotherapy, pop psychology, or my colorful personal history of (mis)adventure.

When I took a close and very honest look at my 43-years on this earth and studied my history closer than I’d allowed myself to, in … well, 35 years … it became pretty clear to me that I’d been swimming uphill against a current that was never fully explained or explored or even accepted by my exasperated parents, intimidated siblings, and confounded teachers. And it became painfully clear that if I was going to continue my life on an upward trend, rather than the erratic and intermittent upward-downward spiral/corkscrew/roller-coaster ride, I was going to have to take a long, hard look at what was really going on with me, and quit hiding behind excuses and avoidance and euphemism and actively ignoring a whole range of serious but well-hidden social, emotional, behavioral, physiological, psychological, spiritual, and neurological difficulties that have interwoven themselves into my life so completely, it’s difficult to separate them out from the “normal” parts of my life.

Lying there in bed, popping amoxycillin and waiting to feel better, scribbling away in my notebook, I realized that if I was going to actually live my life, instead of hiding away in a hole and emerging every now and then to give the appearance of living a life that others would appreciate and approve of, I was going to have to bite the bullet and face my deepest, darkest demons… demons that no one else even fully realized existed… demons that I could probably keep hidden all my born days, but will necessarily keep me from living fully and being a responsible adult, partner, employee, citizen, contributor, and human being.

Make or break time… time to come out from under the rock. Time to step out and let people know what’s happening inside my head. For once.

Because living with TBI is probably one of the most alienating and isolating experiences on the planet. The part of your person that’s in charge of telling you what’s going on, is hurt, and it often doesn’t know it. The part of your body that’s responsible for monitoring your behavior is not response-able, and it likes to hide that fact.

To make matters worse, so little is known about TBI in the general populace, and so much prejudice abounds about mentally compromised individuals — especially people who exhibit classic TBI behaviors like quick flashes of violent emotion and slowed (yes, technically, retarded) mental processing powers — that it’s not very safe at all to come out from under the shields you pull around yourself and interact authentically with the world around you. And if you are quite accomplished (as I am) at hiding out from others, it becomes that much easier to hide out from yourself. And you can lose touch with what your true capabilities are… what you really can do, what you really can’t… what chances you can safely take, and what you’d better not do… what activities and responsibilities you can realistically take on and perform at, and which ones are just asking for trouble, a ticking time-bomb of failure and internal cognitive-emotional collapse.

And that’s a terrible, horrible shame. Because having a TBI doesn’t make you incapable of contributing to the world around you. In fact, it can force you to develop unique coping skills that other ‘normal’ people could really benefit from learning about. It can force you to acquire a point of view that makes it possible for you to stay afloat even in the midst of the worst shit-storm on the planet… a point of view that can really help others make it through life. As a TBI survivor, you’re thrown into a snakepit of hell (again and again, time after time), and if you learn how to climb out (again and again, time after time), well, that’s not only a tremendous accomplishment in your own right, but it’s the kind of inspirational experience that can truly help others who may be less impaired, but still very much in need of help, just getting by in life.

So, my mission with this blog is manifold:

  1. To reach out to the millions of individuals (5.8 million, I’ve heard) who have sustained a TBI, along with their friends, family, and co-workers, to help them better understand traumatic brain injury information from a “lay person’s” point of view. There is a vast sea of medical research and clinical findings available about TBI, not to mention studies, facts, and tons of websites, but it’s often confusing and can be very disorienting. Having a personal “take” on all of it, might just help to humanize this scientific information and make it accessible to the people who need it most — the folks who are living each day with the after-effects of a traumatic brain injury. I hope that in reading this blog, they may be better informed about TBI and quit being so hard on themselves and others, quit being so frightened of this manageable condition, end the silence around cognitive-behavioral issues that are neuro-physiological in nature (not due to some “character flaw”).
  2. To share my personal experiences with other TBI survivors and their families, to help them overcome the feelings they may have of wretched brokenness, to let them know they are not alone and help them see that a broken brain is not the end of the story, so long as your whole body-mind-heart-spirit “information-processing system” is intact. There is more to us than what’s between our ears, and we can live full and satisfying lives, even if they are turned upside-down by forces beyond our neurological control.
  3. To relate my experiences to the psychotherapists of the world, who may be chasing the wrong demons in their counseling sessions, trying to fix “psychological” issues of TBI survivors which are actually neuro-physiological in nature, and help these therapists address the very real emotional/cognitive/behavioral/social issues which plague TBI survivors, often in secret, often hidden behind thick, high walls of shame, fear, guilt, and anxiety. There is a lot to be done in this domain, but folks need to understand the real issues we TBI survivors face, before they embark on diagnostic and treatment courses of action that serve mainly to frustrate and discourage us, and make us feel even more screwed up than we really are.
  4. To assist our men and women in uniform, returning from active duty, who have sustained a TBI in service to this great country of ours, and who are left out in the cold by a medical and psychotherapeutic establishment that often does not understand or fully appreciate their challenges and needs as TBI survivors.
  5. To celebrate my successful long-term survival from a TBI and show others how I did it… and how I continue to do it, so they can have hope and, in the words of Winston Churcill, “Never, ever, ever give up!”

As I said (I think ;), I’ve lived a very high-functioning life for over 35 of my 43 years with an undiagnosed traumatic brain injury, and I’ve experienced more success, happiness, and fulfillment in many areas of my life, than a lot of “normal” people do, with all their fully functioning capabilities. A TBI is not the end of the world, I’m here to testify. But to live life fully, I need to face up to what’s really going on with me, address my very real deficits, and design a course of action that will enable me to not only survive, but thrive… not only get by and give a pretty good impression of a highly successful citizen and contributor, but truly live up to my full potential.

So welcome to my world. Welcome to the world inside my broken-brain head.

Technorati Tags: brain damage Brain Injury cognitive-behavioral issues Emotional Fallout Family Issues Head Trauma journal Mild Traumatic Brain Injury military Motivation and Inspiration mtbi Neurology Neuropsychological Effects of TBI neuropsychology Personal Experiences with TBI psychology psychotherapy rehabilitation Social Issues TBI Physiology TBI Rehab TBI Resources tbi survivor TBI Symptoms tbi testimony traumatic brain injury veterans