Lost to TBI: Enjoying Going to the Beach

I used to love to go to the beach, but in the past few years, I’ve come to dread it. Whereas I used to just race across the sand and dive into the water, I now become highly agitated and cannot relax. I don’t feel comfortable doing anything with abandon. And I dread walking near other people, attracting their attention, or playing in the water in public.

If the beach is empty, it’s one thing. But when the weather is beautiful, chances are, I’m going to be surrounded by people, which I no longer tolerate well. I get very uptight when there are a lot of people around. The conversation and noise distract me and I can’t relax, having to constantly filter out the sounds of other people’s conversations and music and arguments and barking dogs and… whatever. I also worry about being approached by people and not knowing how to handle myself — saying the wrong thing, doing something stupid, interacting with their dog(s) in the wrong way. I worry about looking the wrong way and having people think I’m angry or aggressive or hostile.

I’ve become deeply self-conscious about my appearance. I feel like I’m too pale or too lean or too lanky or too flabby or too… something that other people will notice unfavorably. I sometimes actually forget how I look, and I can end up walking around with bits of clothing or underwear or hanging out, haing my buttons being unevenly buttoned, or looking otherwise disheveled. And I won’t find out till it’s too late. I worry that this will happen to me on the beach. I worry that I’ll meet and talk with someone and I’ll make a fool of myself, and then I’ll see them in town later on, and I’ll be embarrassed by my behavior or my looks. It’s easier to just keep away from people, period.

I’m also nervous about going in the water — it’s very challenging for me. Whereas once, I used to just dive in and splash around, now I have to really focus and concentrate on the movement of the waves. Putting my head under water scares me, and I need to force myself to do it. Once I do, I feel better, and I can relax a little bit, but just getting my head under the water is a struggle at times.

The open space of a beach makes me nervous, as I don’t feel like I can manage my surroundings. I dread being out in the open, and I prefer to be in an enclosed area, where I know where I can hide or duck out of sight.

I feel much better when I can find a “sun trap” to hide away in. It gives me a break from the social anxiety of not knowing how I’ll (re)act/interact around other people, when I get too stressed. If I’m out in the open long enough, eventually I do get very stressed. And I either shut down or I melt down. Neither one is very pleasant for people with me.

It’s embarrassing and mortifying and I hate that I can’t deal with something as simple as going to the beach, as a 40-something grown individual who has always loved the ocean, the beach, and the feel of sand between my toes at sunset.

I fucking hate it.

Lost to TBI: My Lifelong Love of Reading Fiction

One of the things I have progressively lost over the past several years since my tbi at Thanksgiving, 2004, is something I never, ever thought I’d part with: my love of reading fiction.

I grew up reading and loving to read. My parents were — and still are — avid readers. Especially fiction. My mom leads the way with fiction, but my dad is usually not far behind. He’s more partial to personal accounts of adventure and exploration, but he still goes for fiction at times — preferably with a moral to it. Mom doesn’t care whether there’s a moral or not. So long as it’s a book, she’s happy.

So was I. I always shared my parents’ love of books, especially fiction. I grew up with my nose buried in a book, and I actually learned more about life and language and what it means to be human from books than from real people and events. I adored fantasy fiction. Stories about ordinary people in extra-ordinary conditions. Short stories, long stories… novellas and novels and epics (I used to love James Michener, especially). I would tear through books, when I was kid, like a starving kid with a sack full of Halloween candy. Many of my favorite books I’ve read over and over and over again, not caring if I recognized the plot and knew how it ended. I just loved to read!

Until the past few years, that is. Since my fall down the stairs in 2004, this has changed dramatically.

Now reading just about anything that’s over 10 pages is a chore. It’s difficult for me to do. What was once effortless when I was younger, has become very time-consuming and resource-intensive. I really have to work at following the sentences and words and remembering, from one chapter to the next, what’s happening.

It’s disheartening and frustrating, and it embarrasses me. It didn’t used to be like this. But now it is.

I try to carve out time for reading, but I always seem to get pulled off to something else. I get distracted and I cannot finish what I start. Or, I try to read while my partner is watching t.v.,  but I cannot focus, and I get very upset with myself.

I check out lots of books from the library (on impulse) with every intention of reading them, but I only get part-way into them, before I either get distracted or I get overwhelmed with the information, and I have to step away

I tend to forget I have a certain book on hand, then I’ll remember that I have it and get excited and start to read it… but I won’t finish it, because I get overwhelmed with the details, I lose track of what’s going on, and the disorientation ruins whatever soothing effect the book might have for me.

My friends and family, knowing the old me, give me books for the holidays and my birthday, but I can’t get through them. I feel awful because they really want to give me presents I’ll enjoy, and they want to share their experiences with the books with me, but I can’t manage to finish them, or even read enough to hold a decent conversation with them. I might enjoy having the books they give me, but I often cannot seem to bring myself to read – it’s too frustrating and disheartening. My home and my study are full of books I’ve only partly read.

Nowadays, it’s very seldom that I’ll actually finish a book I start, whether it’s fiction or non-fiction. Every once in a while, I’ll manage to complete a non-fiction book about something that affects me personally. Fiction is pretty much out of the question for me. I become highly agitated by the characters’ experiences and choices, and it’s uncomfortable for me to be subjected to their drama. I become impatient with them and cannot sustain an interest in anything that happens to them. Non-fiction gets my juices flowing, but I often get turned around and can’t keep the facts straight, and I end up confused and frustrated and down on myself. Even topics I used to love and authors I used to read voraciously, hold my attention for only so long.

Because my attention tends to wander (if I lose interest or I lose my “info buzz”), I try to stick with higher level research, since it holds my attention and really stimulates me. I do a lot of research on the internet – medical, especially. With the world wide web, I can bookmark (or save) the pages I’m reading and come back to them later. I can print them, too, for future reference, which is important to me. Although, after I print them out, I often forget that I have them, and I’ll end up printing out multiple copies of the same article that really excited me when I first found it. My hard drive is my saving grace. Having copies on my computer reminds me where I’ve been and what I’ve been reading, and when my bookmarks get to be too much to sort through, I can look at my carefully organized hard drive folders and see what I’ve already got in there. Then I can make a note that I don’t need to save another copy.

I still love to read… some things, anyway. I stick more with magazine articles and research papers and web pages. And even with them, I often need to go back and re-read them. It’s not that I don’t understand them. I do! I just get the facts and figures turned around, and I need to refresh my memory and make sure I understand what’s in them.

This is a huge loss for me. Or, rather, it would be if it still meant something to me. Nowadays, I’m happy just to get through the day without a major catastrophe. Reading — which used to be a necessity I could not survive without — has become a luxury for my leisure time… whenever I have it.

Making the most of my self-assessments

I’ve been doing self-assessments on a fairly regular basis, for nearly a year, now. I think the first that I started really digging in around this past February (2008), making notes about what’s been going on with me. It’s been pretty enlightening, especially considering that I had no clue to what extent my issues affected me… until I started keeping objective track.

I haven’t done the best job of staying current with my notes, but I think I’ve collected information that I can use, at present and on down the line.  I’ve resolved to do a better job, moving forward. Even if I just take a few notes at a time, that’s helpful. As long as I have it in a format that I can put with other notes. One of the issues is that I sometimes make handwritten notes, and other times I type them on a computer, into a spreadsheet or a document.

I have been trying to figure out a good way to make use of the notes I do have, so all this experience doesn’t just go to waste. I think I’m getting to a place where I can start collecting my materials and comparing my notes over time, so I can see if I’ve made any progress.

I think I have. I can tell the difference just in the past six months. People I used to annoy to no end have told me I am more communicative with them, and I make more of an effort to deal productively with them, than I did before — when I thought I was fine, but all indicators pointed to me having cognitive/behavioral issues I needed to deal with.

Collecting all my notes and looking at them, I get a little overwhelmed and agitated — angry, too — that I’ve got so much information in so many different places, and that I have to work so hard to organize it all and make sense of it. It upsets me that I’m so alone in all this — that I haven’t been able to communicate well enough with doctors and caregivers to convey the depth of my issues… that I haven’t even known how much help I really need, till lately… that even when I am able to communicate with people, their dashed hopes (about who and what I am and what my personality and life are really like) just get in the way and keep them from being really objective with me… that even if I did manage to communicate effectively with doctors and caregivers, due to recent cutbacks in funding, the chances of me getting help are even less than they were a year ago. After all, I’ve only had “mild” traumatic brain injuries, and I’m still employed, still have my house, still have my primary relationship more intact than many others (even those who haven’t sustained tbi’s)… so I need to step back and let the people with the *real* problems get access to the services they need.

And it’s true, really. I haven’t sacrificed life and limb for my nation. I haven’t had my skull smashed or pierced by a foreign object. I haven’t been in a coma. I haven’t been in the hospital. I haven’t had any medical diagnoses of tbi, because the people around me could never see that I needed help, and I even declined help when it was suggested. I haven’t sustained a terrible, life-threatening, near-disastrous, bloody open head wound that put me out of commission for weeks and months and required me to learn to walk and talk again.

I have been a lot more lucky than that. A whole lot.

But I still need help. And I have to find it somewhere. All the cumulative injuries over the course of my relatively short life have left traces – however faint – of their impact. From mood issues to communication issues. From sensory issues to behavioral issues. From my volatile temper to my willingness to just sit motionless for extended periods of time, doing and thinking absolutely nothing. I still have a long line of jobs that I couldn’t manage to hang onto — some of which I actively or involuntarily sabotaged, when the stress got to be too much. I still have the wreckage of plenty of failed friendships and people I’ve alienated without knowing what I was doing at the time, to show for my injuries.

I still have issues, and I need to deal with them, for the sake of my loved ones, friends, co-workers, home state, and country. I owe it to everyone to learn to cope with these issues as well as humanly possible, even if I cannot get “professional help” or insight and input by experts. Even if the social system is more than happy to let me fall through the cracks, I cannot — and will not — allow myself to go down easily.

I’ve got issues, so I guess I’ll have to address them myself.

I know it’s not “what the doctor ordered” for my condition. I know it’s fraught with issues and pitfalls and danger of just screwing everything up. But my doctor doesn’t really have time for me. None of my doctors really have time for me. Nor does my therapist. Nor does my neuropsychologist. Nor does the system. Nobody really has time for me — and I need a lot of time. It takes me a while to figure things out well enough to put them into words. And then it takes more time for me to work up the nerve to say the words. And then it takes more time for me to clarify what I’ve just said, because people often don’t understand me the first time around. Then it takes me more time to listen and understand their answers.

It just takes too much time for me to get my ideas across and be sure that people understand me. It takes a lot more time than anybody seems willing to give. But I’m absolutely not willing to let myself wither and die, waiting in the wings for them to notice me and take time out of their busy schedules to help me.

So, that leaves me with no alternative than to take matters into my own hands and address my issues (which I cannot seem to get across to others) in the best way possible. I know doctors look askance at this. I know this makes professional experts suspicious. Self-diagnosis is problematic. A proper course of rehabilitation should probably be put together by a qualified, certified individual with plenty of education behind them. And accurate measurements of my progress might not even be possible, coming from me. After all, I’ve got a history of brain injury.

But no one has the time to spare me — not the kind of time I need — so what else can I do? Just give up? Just take a ticket and wait in line for the next available expert, who’s probably all tuckered out from tending to the TRULY wounded? Sit around and wait to be noticed? Make a stink and force people to notice me? Pitch a fit, hire a lawyer, and expect the government to bail me out?

I don’t think so.

I have no choice. I have to deal with this myself. For better or worse, I need to take matters into my own hands and take full responsibility for my own healing, my own rehabilitation.

If the experts have something to contribute to the process, then great.

But I’m not holding my breath.

Now, back to my daily self-assessment… Today I’m doing pretty well… details to come…

I’m listening… but I didn’t hear you…

Here’s a common problem I’ve got – and yes, it’s a problem, not an “issue” or a “challenge”.

I’ll be doing something, like writing a blog post or reading something, and someone will ask or say something to me that I’m supposed to respond to.

I’ll say “Yes,” or “Okay,” or something else that indicates that I’ve heard and understood, but I’ll realize a split-second later that I have no clue what they just said to me. And I don’t have the faintest idea what I’ve just agreed to.

This is a problem. It happens all the time when I’m asked to do a chore, take out the trash, feed the pets, or carry something to another part of the house. I will respond as though I heard and understood and agreed and will do this thing. But I won’t have a clue what just happened.

And then I get in trouble, because either:

  • I’ll ask a few minutes later what I was supposed to be doing, which makes it look like I wasn’t paying proper attention to the person talking to me, or
  • I’ll forget what I was supposed to be doing, and it won’t get done, which gets me in hot water

If I can explain to the person talking to me that I’m having trouble processing what they’re saying to me, then that can help. But I don’t always have the time to do that. And sometimes by the time I figure out that I’m lost, I’m in hot water.

I spend a lot of time being in hot water. Especially at home.

At work, this happens periodically, but I can usually cover it up, because I understand my job so well that I can usually figure out ahead of time what I’m supposed to be doing, and then I’ll do it on my own time. Or I can “push back” on the people who are all over me to do something, saying that I need to do it properly, and quit pressuring me, already.

From what I’ve observed, this is what happens when I “lag” with my processing

  1. Someone says something to me
  2. I sorta kinda register that someone is talking to me
  3. After a few seconds, my brain kicks in and starts paying attention
  4. I realize that I’m not paying close enough attention, and I start really tuning in
  5. I realize that the person who is talking to me has said a bunch of things that didn’t register, so I start “rewinding” what just happened to see what I missed
  6. I get a lot of visuals about what I’m being told — different pictures flash through my head, some of them fit what I’m being told, others don’t fit at all — and I try to figure out the context of what’s being said to me… this all happens in split seconds, and it’s usually accompanied by a fair amount of anxiety, because I’ve gotten in so much trouble for getting things turned around, ever since I was a little kid, and I don’t want to get in trouble again!
  7. While I’m rewinding and replaying what happened before, this person is still talking to me, telling me more things I should be paying attention to, but my attention is divided between present and past
  8. Best case scenario: the directive is short and simple and familiar to me… Worst case scenario: what I’m being told is something new to me that I’m not following very well, I don’t have a context for it, and I’m getting all turned around
  9. If I’m lucky, the person talking to me finishes up and believes I understand what’s expected of me. If I’m not at all lucky, I am completely turned around and need to ask for help understanding, I don’t say things the right way, and the person talking to me gets really pissed off at me… starts to yell at me for not paying attention, and tells me I’m pathetic or an idiot or something like that

It’s not that I wasn’t listening. I just didn’t hear them.

Between the ringing in my ears and the many, many ways my senses are working overtime… and the way my brain is working overtime trying to make sense of it all, it takes me a little while to switch gears and get a clue that someone is trying to communicate with me. It’s not that i don’t want to listen — it just takes me a little longer to do it.

I wish the communication process were simpler with me. I think I may start asking people close to me to give me a heads-up that they’re going to say something to me… like I’ve done with deaf folks I’ve known, who have wanted me to stomp my feet on the floor or do something else to let them know that I’m about to engage with them.

Well, there are lots of areas for improvement, and I’m figuring out more every day. It’s a process, really. Something that just develops over time. And if I just don’t give up and keep going and keep trying and keep working at it, someway, somehow, I do manage to get it all sorted.

I am listening… and eventually I will hear you.

I wish my therapist knew… I need more help than regular folks

First, let me say, I really like my therapist. They are insightful, patient, kind, and they  let me just say what I need to say, without getting alarmed.

But they don’t know about brain injury, and there are some things I wish they understood.

Like the fact that my brain doesn’t work like other people’s brains, and the assumptions they make about the source of my problems may not be accurate.

Specifically, I was talking last week about a relationship that’s very close to me, and they started talking about me being “codependent” with this person. Okay, first off, I’m brain-injured. That means I need to depend on others for things that regularly functioning people don’t have to. I do not necessarily have the capacity to be fully independent in all things. I’ve tried it in the past, and it didn’t work.  Even when I thought I was being independent, I was doing a piss-poor job of it.

Take, for example, the six months or so that I lived all alone, back in 1990. I’d broken up from a long-term relationship that wasn’t working, in February 1990, and then I got into another relationship with someone who was a pretty good caretaker, then got into drug and alcohol abuse, and I had to leave them, too. From about June until November, 1990 (when I met the person I’ve lived with pretty much ever since) I was on my own, taking care of myself and my apartment, going about my regular business. I was making art, drawing, sculpting, making pottery, writing, living my life… you name it. Things were pretty good, and I was doing a passable job of taking care of myself.

On the surface I was, anyway.

What most people couldn’t see, was that i wasn’t taking care of myself properly. I didn’t keep my place very neat, I didn’t eat right — I ate mostly rice and beans and steamed carrots and peas. I rarely ate a balanced meal. I didn’t go out much at all, but stayed inside and wrote and drew and listened to the radio. I had a very limited range of motion, and I wasn’t able to cultivate many friendships. I was employed for a while, then I had to leave my job and start temping because of physical issues that arose from me not taking care of myself. I was smoking a pack of cigarettes a day, and I was living in a constant fog and daze, unaware of what was going on around me, going through the motions without realizing that was what I was doing.

When I think back, I’m amazed I did as well as I did.

Then I met the person I’ve been with since then, and things started to turn around — here was someone that was able to interact with the rest of the world, whom I could “cue” off… I could follow their lead and watch what they did, and imitate their manners and get by. This person was so lively and social and so popular and in-demand with everyone them. They knew how to make people feel safe and valued and secure and happy… they were exactly the kind of person I wanted to be like. And when I followed their lead and behaved like they behaved, then I could experience life like they did, which was a much brighter and more vibrant way of living than my own. And I could buy myself time to figure out what was going on around me, by following their example and satisfying basic social requirements that others expected me to fulfill.

Writing this for others to read, it might sound like I’m just a shell of a person who just runs around and imitates others to get by. And in a way, it’s true. Left to my own devices, my range of motion in the world is so dramatically limited — I don’t feel comfortable out in public, because it’s so overwhelming for my senses. Given a choice between doing something productive and sitting motionless for hours, my brain will choose the latter. Given the choice between interacting with others and writing 100 pages of repetitive “insights” about an hour of my day, I’ll go with the writing. Given the choice (at the end of the day) between eating a full meal that takes an hour to prepare, and snacking on crackers and goat cheese, I’ll choose the snack.

It’s not that I don’t value myself. It’s not that I’m sucked into a relationship that’s compromised by codependence. It’s that I’m in a relationship that makes room for my dependence.

Calling me “codependent” makes me feel deficient. It makes me feel ashamed. I need more help than other people to do the kinds of things most people just take for granted. Given the choice between the normal thing that takes a lot of effort for me, and the irregular thing that my brain can handle without undue stress and strain, I’ll opt for the latter — and I’ll never realize there is anything wrong with it. That doesn’t make me bad, it doesn’t make me flawed. It doesn’t make me a basket case. It means I’m dealing with the limitations of a brain injury — a hidden disability that others have no idea is there, and they have no idea about the extent to which it affects me. Even I don’t fully realize it, most of the time. And people who jump to conclusions about me being psychologically compromised because of behavior that is brain-injury related really need to study up on anosognosia, before they start judging me and my life choices.

I’m realizing more and more each day, that I’m having a lot of trouble with the terminology that’s being used with me by my therapist — codependent… denial… shame… trauma… It feels to me like things that go hand-in-hand with brain injuries, are being interpreted as psychological/emotional issues…. and they get interpreted as things that I can change at will. As things that a little self-awareness and psychotherapy will solve. My question is, if an issue has neurological roots, how can a brain that’s been impacted be expected to fully grasp and deal with what’s going on with it?

It could be that I am never fully independent. I never have been, as much as I’ve wanted to be, and I may never turn out that way. But I don’t see why I need to be judged for it, or urged to be something I’m really not.

TBI Benefit #27 – An increased refund from the IRS

I got a surprising letter today – actually it came yesterday, but I was napping and resting most of the day, so someone in my household brought the mail in, opened it up, and left it for me on the kitchen counter. Lo and behold, the refund I’d calculated for my 2007 taxes (I filed for an extension and did an estimate, which was conservative — I took all the deductions I could legally take, according to TurboTax, and along the way, when I found some other deductions I was pretty sure I could take, but wasn’t 100% certain, I just didn’t include them. Now the IRS is telling me that they owe me a bigger refund — probably by a couple hundred dollars, since I don’t have my tax returns in front of me.

You don’t hear that every day!

My strategy of claiming less deductions than I suspected I was owed paid off… for now. I actually found some other earnings that I’d completely missed when I filed my estimated taxes, so my refund may actually be lower, but the habit of being more conservative and less hasty worked out for me. Playing it safe, with the understanding that I could be completely wrong in my math, soothes me and gives me something to fall back on. In any case, my thinking about things tends to get fuzzy and I tend to lose my train of thought, so I don’t dwell too intensely on tax anxiety.

I guess my attitude towards taxes is very different from most folks’ — I believe in paying them and paying my fair share. Yes, there are a lot of places my tax monies go that I don’t agree with, but all in all, the tax burden here is far less than in many European countries, PLUS I get a whole lot more freedom here, than anywhere else, so I figure it all evens out. I pay my way. TBI or no, I pay my way.

I like my roads paved and plowed. I like having elected officials. I like the fact that children of poor people have access to milk and cheese and other WIC resources. I’m not one to judge others for “gaming the system” — too many people do it in too many ways for me to get started on that, and it just confuses me. Our governmental system, say what you will, makes it possible for us to live in an amazing country that people are literally dying to get into.

Yes, I pay my taxes.

Paying taxes for me, is actually an important symbolic thing. Sure, I slip up sometimes and have to file for extensions. And sometimes I’ve messed up and even missed the extension deadline. But I do pay up, because being able to participate and contribute to this country is not something I take for granted. I’m a very different person from most folks, and my abilities are varied and my disabilities are often hidden, so the times when I can participate as a “normal” person… pitch in and help out… do my fair share… help make a difference, in however small a way… well, I take that opportunity.

I think a lot of “neurotypical” people take things for granted that mean so much to so many of us who are on the margins — by chance, trick of fate, or horrible accident. I think people tend to take for granted the ability to go out and get a job, the ability to participate in casual conversations, the ability to meet other people and be active in their communities. I think that a lot of regular people just assume that things are done a certain way — you get up in the morning, shower, dress, go off to work, put in your hours, then come home, pay some bills, watch some television, and go to bed… and do it all again, the next day. On the weekends, there are sports games and activities… movies and get-togethers… travel and leisure pastimes that many, many other people are doing… take the boat out on the lake… go skiing or surfing or skateboarding or sailing or hiking or play a ballgame of some kind.

But for someone like me with a history of tbi’s, none of those things are foregone conclusions, and they rarely go as smoothly as regular think they do (or should).

Getting up in the morning can be a challenge, as I’m rarely fully rested, and I tend to wake up either too early (most of the time), or too late. Showering can be a complicated thing, as I often can’t keep track if I’ve soaped up and rinsed off, shampooed my hair, or how long I’ve been under the water. And my lightheadedness and vertigo can make just standing in the shower a really nerve-wracking exercise.

Dressing for work can set me off, because I tend to forget what I’ve worn earlier in the week, and unless I have my clothing all lined up in chronological order, I can easily end up wearing the same thing twice in two days. Plus, if I’m really out of it, with vertigo or sensory issues, I can walk around for most of the morning with my shirt buttoned all wrong or my fly open. (I once went through a whole animated job interview, standing at a whiteboard, sketching out possible solutions to problems posed to me… with my fly open… which is NOT the kind of impression I wanted to make! I still got the job, but jeez, how embarrassing!)

Going to work has its own share of hazards, as bright sunlight is hard for me to handle, and even with sunglasses on, the shifting contrasts of light and shadows play tricks on my eyes. And when I’m tired, there’s always the hazard of road rage… or misjudging a situation. One morning, not long ago, when I was tired and angry while driving to work, I almost ran in to someone who wasn’t obeying the right-of-way rules — just because I refused (on principle) to budge. They were driving right into my path, but I had the right of way, so I motored on like a bull-headed idiot, and I almost got hit — just because “I was in the right” and they weren’t following the rules. On principle, I was correct and I had every right to drive through. But principle won’t pay for car repairs, and I only have one car I can reliably drive to work, so “standing my ground” was a really dumb thing to do. Plus, thinking back, if they had hit me, considering the place that I was in, that morning, I probably would have gotten in a fist fight with them, and I might very well have been arrested.  I was in a really bad place, and I consider myself (and the other person) to have been literally spared by divine grace. If it were up to me, I would have landed in really hot water!

At work, depending on my state of mind and body, I can either have good days or bad days. But it often takes a lot of effort for me to function at a “normal” level. Nobody I work with knows I’ve had TBI’s, and I’m not about to tell them. I hold my own and I do my piece, but it’s a real chore sometimes, just to get going. I have massive issues with initiating, with concentrating, with following through. I have huge interpersonal issues that I do a pretty good job of keeping quiet about — things like rage and hostility and anger and mood swings. On the surface, I try to stay impassive, but under the surface, it’s often a seething swirl of confusion and mixed emotions that are as high as they are varied.

Heading home in the evening, after a long day, I just try to listen to the radio and keep chilled out. I have to work harder at paying attention to traffic when I’m headed home, so that keeps my mind off interpersonal aggressions and whatnot.

At home in the evenings, I’m just so wiped out, so often, I can’t even look at anything that needs to be handled. I’m so exhausted… it’s all I can do, to eat supper and flop down in front of a movie. Now and then, I’ll manage to do things I’m supposed to do, but they often get pushed off till the weekends.

I have to say, in th past, I tended to just push through and not give myself a break and just ignore the fact that I was exhausted all the time. I didn’t pay any attention to myself, and I didn’t take care of myself. I didn’t like the fact that I was tired all the time, so I refused to admit it, and I just pushed through with doing whatever I felt needed to be done.

That was fine for my productivity, but the net result was that I was an impossible person to live with. I was unresponsive, most of the time, moody and volatile to the people closest to me, non-communicative and prone to temper outbursts and meltdowns, and the kind of person whose intense volatility made everyone around me walk on eggshells all day. Yes, I appeared to be productive. Yes, I was getting things done. But I was just a machine — a shell of a person whose only solace was that I was making good money and keeping up appearances. Inside, though, I was wracked with pain and sorrow and exhaustion and hurt and anger and rage and confusion.

Now, I think know I’m much better off. I’m less “productive,” and it takes me forever to get things done or process ideas and conversation, but I’m now communicating with the people who live with me far more than I did in decades… I’m now sleeping more and taking care of myself better than I ever did… and I’m actually aware of what’s going on around me, which is more than I can say for the person I was, just three years ago.

Weekends… well, I won’t even go into them. Mine are very low-key, for the most part, and I do so poorly with crowds and frenetic activity, most popular activities (like the ones I mentioned above) do NOT appeal to me. I spend most of my time gearing up to do basic things – like take the trash to the dump or go food shopping or go to the library or clean something. I spend a lot of time spacing out and not doing much of anything. And by the time Sunday night comes around, I often feel pretty deficient about not having gotten much done.

Daily life for someone with a TBI is often far from simple, and it’s often anything but straightforward. Sometimes it takes a monumental effort, to just approximate “normal.” I accept that as part of my life… just something I need to deal with… and I try not to dwell on it too much, lest it demoralize me and hold me back.

Given all the “normal” things that tend to be so complicated and difficult for me, if there’s something relatively simple and straightforward I can do to participate and contribute to the common good — like pay taxes — I’ll gladly do it.

It’s a small price to pay to be part of something as amazing as the United States of America.

Watching Kung Fu Movies and Wondering…

One of my favorite things to do as a teenager, was watch Kung Fu movies on rainy Saturday afternoons. I had an active childhood, so if the weather was nice, I was usually outside. But on rainy days, the next best thing to be running around raising hell, was watching other people do it — and with poorly synchronized dubbing.

I just loved those movies, and I watched another one last night.. while eating Chinese take-out, which was perfect.

Now, it’s Saturday afternoon, and I’m hankering for watching more.

And thinking back to the movie last night, I remember noticing how very many times people in the movie got hit on the head, smacked in the face, pounded and knocked around. They all got back up immediately, of course, and went right back into the fray. And their characters never seemed to show any sign of diminshed capacity after their rigorously violent battles.

I enjoyed the movie, but I found myself cringing a lot while I watched. Knowing what I know about brain injuries and how even a minor impact can cause larger problems on down the line (which is a lot more than I knew when I was a kid), I have to wonder if it’s really such a good idea to consider that sort of thing “entertainment”.

Still, I must admit that I really do enjoy watching the fighting. The choreography. The physical prowess. The warriorship. It’s very cool. And I have to wonder, at the same time, if head trauma isn’t actually just a part of the human experience that we somehow have forgotten how to accommodate or heal in our modern society.

When I think back about the past 10,000 years of human history, I come across a lot of warfare and conflict… burning and pillaging and pitched battles… invasions and conflicts… many of them hand-to-hand, not conducted at a distance with computers and remote controls. If you think about it, human history is full of head trauma, from the injuries sustained just by working jobs of hard labor — as in, most work that was done, until about 50 years ago, when so many of us migrated to inside work — but from fighting and falls and accidents and warfare that just kept coming in waves and waves of invaders.

Truly, human history has been fraught with head injuries, and the complications therefrom have probably  had a greater impact on our species’ experience than we realize.

That being said, I have to believe that head injuries are meant to be survived. If they weren’t, we’d probably all be dead — or would have never been born.

I mean, think about it — how many soldiers have come back from how many wars, with headaches and cognitive issues and mood disorders and PTSD, and still got re-integrated into society? I can think of a lot of WWII and Korean War veterans who did. In fact, I suspect that the elder generation of soldiers had a far higher incidence of head injury than they let on. But because of their cultural training and expectations, they didn’t let on. I’ve known WWII veterans who — upon close scrutiny — had the hallmarks of TBI. And yet, they participated in society, married, raised kids, had careers…

And how many children throughout history were beaten by other kids or adults, or had falls or accidents… sustained head injuries, went on to lead regular lives? Lots and lots, I believe.

Like the fighters who were on my t.v. screen last night, I’m quite sure that many, many people throughout history have had head injuries, but continued on in spite of them. Some may have fared better than others — I’m sure of it. But they fared. Hit on the head or not, they fared.

And so do I.

But still, I don’t go looking for a fight.

And I can’t help but cringe, when someone lands a hard punch and knocks someone out.

Impulse Control 101

In the past months, I’ve noticed a pattern of behavior that I never really thought about before –my tendency to check out library books en masse when I’m getting over-tired, fatigued, and overwhelmed.

I also tend to start projects, just because they seem interesting to me in the moment and they get my  mind off my troubles… not because I actually plan to follow through and complete them.

I first noticed this for real, in February of this year. From my self-assessment form I filled on on February 6, 2008, I wrote:

I’m drawn to library books, and impulsively check them out, loading up on lots of them. I also impulsively start on a lot of research projects and other projects.

The intensity of my desire to check out lots of library books or start projects was about 3/10 that day, and the impact of it was 7/10, because while the intensity wasn’t that great, it still was very disruptive to my regular life.

From my sheet:

I went to the library today, but I just looked through some of them, rather than checking them out. I returned a book I wasn’t reading. I also sat down and looked at what projects I can realistically complete, and which ones are just interesting/compelling to me at this time.

I managed to get rid of a book, rather than bringing in more.

Now, it might not seem like a huge deal, but this was a big revelation for me. Here, all this time, I had been thinking that I was studying and doing things that would ultimately bear fruit and enrich my life, but it was really just to distract myself and soothe my intense emotions that were coming up because I was fatigued, and I was too tired to realized that I was fatigued.

This is one of the issues of self-awareness that I often face — I won’t realize till later that what I’m doing is not really productive, and I’m actually doing it for a very different reason than what I tell myself.

Discovering this has, since last February, made it possible for me to not only identify the things that I am really interested in doing, because they are important, but also to pace myself and not drive myself so frantically, just because I’m fatigued, and I don’t know it.

Well, as long as no one is getting hurt, checking out library books isn’t the worst way to deal with my stress. But a long nap would be more constructive.

Speaking of which, I am tired. Time for my nap.

I have started an art gallery to explain my tbi experiences

In the course of working through my tbi issues over the past year, I’ve realized that words alone aren’t always the best way to communicate what’s going on with me. I grew up in a very verbal household — both of my parents are avid readers, and I was often found with my nose in book. I never thought of myself as an artist — my younger siblings were the “artistic” ones. I wrote stories and I focused more on words (perhaps because the act of hand-writing uses parts of the brain that are related to impulse control, and I instinctively new I needed to develop that part of my brain).

What I didn’t realize (till my mother told me within the last year) was that as a child, I had a very advanced visual “intelligence”. I drew pictures as a young kid that incorporated elements that weren’t usually seen until later in one’s development. In some ways I was a prodigy… but I think that changed, when I started to have head injuries… so that my skills and abilities were hidden behind the difficulties I had, and they were not actively developed.

In the past year, I’ve found myself drawing and painting A LOT. And I’ve found that when I draw and paint, I am actually better able to think about certain things, than if I just use words. I’ve also found myself remembering events from my life that had escaped me for many years. There’s something about the color and shapes that triggers my memories. And it also brings up a lot of emotion.

I’ve started an Imagekind Gallery (tbi-survivor.imagekind.com/art/) where my artworks can be found. I only have one piece up there, right now, and it shows how I see my back yard. But there will be more coming.

I’m pretty excited about this new development — both as a way for me to express myself and show the world I live in, and to help educate people about what it’s like to live with the after-effects of mild traumatic brain injuries.

Imagekind offers prints of my work on paper and on canvas. I hope you’ll pay a visit.

When they think your TBI is PTSD

I just checked my blog stats, and somebody came over to this site while Googling for info on soldiers and PTSD.

I want to quickly put in a word for military folks who are seeking help for post-combat/deployment issues, who may be headed down the PTSD treatment road, but may miss TBI treatment in the process.

I started professional counseling about six months ago for “coping issues” that I couldn’t get my head around. Everything in life had just gotten so difficult, and I couldn’t understand why I kept running into dead ends with jobs and relationships and why I couldn’t seem to advance in life. All my peers have “moved on” and “grown up” — many of them now with grandkids and advanced careers, long-term homeownership, and all the accoutrements of adult life… while I languished in a no-man’s-land of false starts, scattered ideas, and a long line of failed or aborted attempts at living a normal life.

Now, don’t get me wrong — on the surface, my life looks like it’s highly advanced. I’ve got a great home, a wonderful marriage, and two cars in the garage. My resume looks fabulous, and I’ve got a lot of respect from folks. But my external circumstances don’t match my internal state… and they haven’t for a long time. Nobody really knows just how deep the self-doubt, anxiety, self-criticism, abysmally low self-esteem, and constant invisible struggle really goes.

Except me. And I don’t breathe a word of it to anyone. Not if I can help it.

So, when my health and career and personal life all started to tank in a very big way, this past year, I sought professional help. The counselor I found is highly experienced, compassionate, insightful, kind, caring, and very adept at what they do. But I found myself over time feeling as though they were looking for some sort of horrific trauma in my past that would cause me to lose big chunks of my memory, be uncertain around people, and erode my emotional and behavioral (and cognitive) foundation.

I got the distinct impression they were looking for emotional trauma. Abuse. Neglect. Some sort of terrible thing(s) others did/do to me that cause me to have PTSD. Or some life-threatening event that brought on PTSD.

We had talked about post-traumatic stress a good deal, and both of us accepted that it could have a part in my difficulties. But no matter how closely I looked at my life, I couldn’t for the life of me find THE Event(s) that had wrecked me for “normal” life.

It just didn’t make any sense to me. And when I dug deep and did my own research and realized that sustaining a traumatic brain injury at the age of 8 (and possibly other times), as well as another TBI three years ago, did actually fill in a huge, gaping missing piece of the puzzle.

It’s not that my counselor was incapable or incompetent. They were just looking for the wrong thing in the wrong place. They’re a wonderful resource for me, and I really value their input, but in the case of TBI, I had to come up with my own diagnosis.

This article was very helpful:

Concerns grow about war veterans’ misdiagnoses – Brain injuries can defy easy detection” – I passed it along to my counselor, and they found it very helpful… as well as a bit disconcerting.

And the blog “A Soldier’s Mind” has some more info.

If you’re in the same boat I am/was, you may need to do your own research & preliminary diagnosis, too. After all, TBI tends to make it very difficult for people to tell what’s going on inside our heads — and it can make it tough for us to figure that out, too. Doing research online is a great way to make a start.

I’m finding that TBI is not particularly well-known in the psychotherapeutic community — I have a bunch of friends and associates who are therapists, and when I’ve talked about TBI, I’ve gotten blank stares. That’s not entirely their fault. They aren’t always trained to look for physical ailments, which are the domain of medical doctors. If anything, they’re taught to look away, in terms of medical issues — liability issues, I suppose. Unfortunately, there seem to be a lot of highly trained individuals who simply don’t have the kind of physiological orientation that treats cognitive-behavioral symptoms as possible neuro-physiological phenomena. They are accustomed to looking at emotionally traumatic life experiences as the root of PTSD problems. They’re looking for the right thing… but they’re looking in the wrong place.

I really want to devote a fair amount of time and energy on this site to explaining to psychotherapeutic professionals the personal realities of living with TBI, as it relates to trauma. There are different aspects of the condition that both mask post-traumatic stress and exacerbate it. TBI adds another wrinkle to the whole scene that complicates matters and requires greater sensitivity to our situation.

When I informed my counselor about my TBI, they seemed a bit concerned that I wouldn’t need their help anymore… or that I’d terminate my sessions with them. They seemed to think that TBI work would replace the cognitive-behavioral work I was doing with them. But in fact, the TBI aspect makes it even more important to do cognitive-behavioral counseling. It doesn’t make counselors superfluous. If anything, it makes them all the more essential.

Other posts about PTSD:

Better today… of pain and ptsd

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