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…

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What is it about Thanksgiving?

Thanksgiving (the US version) is right around the corner, and with it comes two anniversaries of different head injuries I sustained. At least, two that I can remember;)

The first of the two happened back in 1996 or so, when I was headed out to visit family several states away. I had gotten off to a late start, and I was driving on the day before Thanksgiving, which was a very poor choice (… and in itself could be seen as a sign of impaired cognitive ability 😉 ) Anyway, I was in the fast lane on a multi-lane freeway, and traffic was stop-and-go. The fast lane was the most erratic of all four lanes, as a lot of really impatient people (myself included) were weaving in and out, trying to get past one another, so they could just get down the road.

I was getting really tweaked by all the stop-and-go, but I steeled my nerves and hung in there. I was driving a fairly new rental car, and I was comfortable. I adjusted the radio and focused my attention on just getting down the road, keeping an eye out for what was going on around me. The fast lane started to pick up speed — to about 40-45 mph, which wasn’t mach speed, but was a lot faster than we’d been driving.

Suddenly, I sensed something was wrong. The distance between my car and the car ahead of me was quickly closing. I didn’t see any brake lights… I couldn’t see anything other than the rear end of the car in front of me quickly approaching. In a split second, I flashed on the ABS (anti-lock braking system) logo I’d seen on the hubcaps of the rental as I was getting in, and I hit the brakes quickly.

Not quickly enough, though. As though in a dream, I saw the gap between my car and the one in front of me disappear, and my front bumper bounced off the rear bumper of the car in front of me. Still no brake lights of the car in front of me. I breathed a sigh of relief, as it didn’t look like there was any damage. I could see the back of the car in front — I’d bounced back about a foot — and I hadn’t heard any breaking glass or crunching steel or fiberglass.

Then came the rear-end collision. SLAM! Behind me, another car and smashed into me with much more force than I’d hit the car in front of me. My car bumped forward, amid the sickening sound of a splintering impact. I held very still, listening for anything else, bracing for another possible impact. None came. Everything went eerily silent.

I was dazed for a minute… frozen in place… I saw the person in the car in front of me jump out of their car, walk to the back, see if there was any damage, and then drive away quickly. I didn’t have time to get their license plate, and I didn’t have time to talk to them. They were just out of the car — around to the back — and then they hopped back in their vehicle, pulled out of the line of cars that had all run into each other — and took off.

At my side window, I heard someone tapping. It was the person who’d hit me from behind. They were checking to see if I was okay, and I nodded that I was. I got out of the car and walked around to the back, and I found lots of pieces of their front grille lying on the road between their front bumper and my back bumper. My own car seemed to be unscathed. There was no sign of any impact at all — just some smears of paint from the car behind me.

The sight of the car that rear-ended me was pretty unnerving, though. The grille was smashed and lying on the ground, and the front hood was buckled and splintered and smashed. The headlights were — from what I could tell — stilli intact, but the front was otherwise creamed. I wasn’t sure if it was driveable, but that was not the thought that stuck most in my mind.

I traded insurance and car rental info with the person who’d hit me — they were driving a rental, too — and after a few minutes of each of us checking that the other was okay, I drove on, while they stayed. I’m not sure if they were waiting for a tow, or if their car was driveable. I remember very little from the rest of the trip — just that when I got to my relatives’ place, I got on the phone with the rental agency and told them what had happened.

They told me to fill out the form in the rental agreement and report any damage. So, I read through the form — which made no sense to me at all. No matter how often I re-read it, I couldn’t make head or tail of the words. They all jumbled together, and I couldn’t understand them at all. I looked over the car — from top to bottom, I thought — looking for any signs of damage. I could see nothing other than some cosmetic issues — little smears of paint and a little scratch, but nothing else.

I finally just signed my name and checked the “no damage” box and put it aside to mail when I got home.

And I had Thanksgiving with my family, which was a blur. It often is, so it’s hard for me to tell if I had some immediate after-effects of the accident.

I did notice after-effects later on, though. Like the fact that I’d missed finding the absent reflector on the back left side of the car. It may have popped out on impact, but I hadn’t noticed it was even missing, until it was time to go back home.

Also, when I got back to work, I found myself having increased difficulty following what was said to me, keeping my tasks straight, navigating the political landscape of my administrative job… things really fell apart for me at work, after the accident. I was clumsy and hurt myself by bumping into things. I was disorganized. I was irritable. I couldn’t articulate the way I’d once been able to. And within a few months, I had left that job — hopelessly lost — and started on a new career that involved computers, not office politics.

Ultimately, it was a good move, and it vastly improved my life. I hated that job by the time I left it. But I would have liked to have made the move to a different job out of pro-active choice, rather than re-active avoidance of problems I didn’t realize I was having.

Thinking back now, I can see how the first months of my new job were pretty slow going and very painstaking in many ways, probably because of that accident. I couldn’t follow instructions very well, I had trouble understanding what people were saying to me, and the one saving grace was that I was new, so people could blame it on me being green and a newcomer to a company that by its own admission is a bit of a confusing maze for the newly initiated.

I do believe that working with computers and being basically sequestered in my cubicle to sort things out, did help me recover. I was all alone, and I was quite happy that way.

So, that’s my first Thanksgiving TBI anniversary story.

The first of two that changed my life.

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.

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 Symptom of the Day – Such trouble sleeping!

I had another rough night, two nights ago. Probably had something to do with my visit to the doctor, but then again, I haven’t been sleeping all that well, lately, anyway.

I was up at 2:00 a.m., drenched in sweat — I’m having a hard time moderating my body temperature, these days, as the seasons change. I’m either too warm or too cold, and when I get too hot, I sweat like crazy, when then soaks my pajamas and then I get chilled.

It’s just not good.

I tried listening to my guided imagery CD that’s meant to help me sleep, but it wasn’t working. I considered taking a shower to get all the sweat off me (sometimes the odor of my perspiration keeps me awake).. but then I opted for just changing my t-shirt and changing bedrooms.

The guest bedroom in the back of the house is quieter and smaller, and it feels sheltered. It doesn’t have much furniture in it; it’s pretty bare-bones, in fact. And it’s where we keep our extra stuff, like dirty laundry, shelves I have not taken out of the box and hung, yet, odd luggage that we can’t fit anywhere else, and a half-working multi-function fax-scanner-printer that bought the farm many years ago, but doubles as our outgoing fax machine (which we need surprisingly often). But the room has a nice feel to it, and it’s like a sanctuary to me when I’m not feeling well. It’s also where I take afternoon naps on the weekends, sometimes. It’s a nice room, the humble features notwithstanding.

I pulled a nice heavy quilt out of the closet, spread it across the bed, got my pillow, and climbed in. There’s something about making a “cave” out of my covers that makes me feel safer and more comfortable. I think the difference in the temperature in the room — my usual bedroom tends to be hot, and I’ve had the humidifier running to help avoid sinus issues — and the quiet in the back of the house really helped. Plus, it was a change of pace for me. I usually only sleep in the back guest room if I’m sick and I need to keep away from everyone.

I guess that wee hour of the morning was one of those times. Because I was sick. Tired and overtaxed and worried about my health and wondering if/when this TBI business is ever going to let up on me, and give me a break.

It could be that it never does. It could be, I have to keep dealing with the fallout — emotional, social, interpersonal, logistical, professional — all my live-long days. That probably will be the case. But on days like today, when I’m just so tired and I’m so fed up with having to navigate the world with different and/or diminished resources, I start to lose faith in my ability to cope.

I can cope, of course. I always have and I always will. I wouldn’t have gotten this far in life, with all those head traumas and all those tough experiences with family and friends and jobs and just daily living, if I didn’t have it in me to cope. I’ve been coping since I was seven years old, which means I’ve been at this for 36 years. But on days like today, when I’m tired and feeling like I’m falling behind in everything and I don’t know how I’m going to keep up, I start to lose faith.

Until I find something really great to perk me up. Like the fact that the speed of my broadband connection has improved exponentially, far beyond what I ever dreamed possible from my ISP, and I’m on good terms with my co-workers who also enjoy my company (when I’m absorbed in thoughts that perk me up, of course).

I think that if anything has spared me, in the years after my various TBI’s, it’s my continued sense of … well, adventure. And my tenacity. There’s a joke that with Alzheimer’s you get to meet new people every day, which (even by my fringe standards) is twisted and callous. But in a way, that’s how I feel about my own neurological issues. There is literally never a boring moment. If I approach each new situation with a sense of curiosity, even wonder, and I don’t get too hung up on the fact that I tend to screw up royally the first couple of times I try things… and I keep my sense of humor… and I just hang in there and keep trying, till I get it right… well, then, nothing is too terribly big for me to tackle (within reason, of course — let’s not go hog wild and get our hearts set on space travel or paying off the mortgages of every duped homeowner in America).

Some days, of course, I despair. I mean, it just really sucks when your brain doesn’t function the way you’d like it to — and everybody expects it to. It really sucks, when your own doctor backs away from you in alarm because they’ve discovered their assumptions about how well you can cope in the world are dead wrong. It sucks when your loved ones cannot deal with your temper, your memory issues, your mood swings, your difficulties remembering where to look for the note that’s supposed to tell you what to do today… And it really sucks, when you’re not sure who your friends really are…. and you don’t know if you have it in you to try to find out for sure.

But on the whole, I’m just so stubborn and hard-headed and too in love with life, to just give up and quit the game. Or even sit on the bench. I’m a viable, lively human being with a big heart and a lot to offer and a whole lot of life experience that others might find useful. Why should I live any less of a life than other people who haven’t gotten hit on the head and knocked around? Why should my injuries disqualify me form living my life to the fullest? They shouldn’t!

So long as I get enough sleep. Having enough rest is of paramount importance to me. If I haven’t slept, I can go off the deep end really quickly and start to make life miserable for everyone arund me. It’s the short temper, the extreme (someetimes violent) mood swings, the yelling, the tears, the inability to concentrate, the lapses in my memory over things that should be so simple… It’s all of it… it’s the almost childlike dependency that makes people wonder who I am, really… the reluctance to go out and be social, for fear that my tiredness will wear on me and make me edgy and gruff and put people off, and make me say things I regret and don’t really want to say. It’s the anxiety about any sort of social interaction — even with friends — that isolates me and ties me up in knots, since I don’t really have anyone I can just shoot the breeze with and bounce ideas off of. It’s the anxiety about people I know finding out about my tbi, when they had no idea before, and treating me differnetly, even though they’ve known me even in my most troubled times when my symptoms were really playing havoc with my head and behavior.

When I haven’t slept, I have trouble doing the most basic things — like remembering to zipper my fly. Like remembering to turn on my headlights when I pull out of the driveway. Like remembering a very important task I have been meaning to do. Like being able to understand people when I talk to them on the phone.

It seems like such a basic thing. How could sleep deprivation cause these issues? How could something so simple make my life so hard?

I’m not sure. But it does.

So, this weekend, with the support of my family (who are growing tired of dealing with a tired version of me), I will rest. Sleep. Take it easy. Read a good book. Write a little Draw a little. Just chill out. Take long hours to listen to my guided imagery CDs that I’ve been meaning to listen to. Spend some time doing some self-assessment and looking back over my past week to see what the pain points were. Tomorrow I’m taking time for myself, which is a rare, rare thing. And I’m going to catch up on my sleep, if it’s the last thing I do.

Nothing else matters, at this point. My priorities are clear.


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Reverse-engineering my “depression”

I’ve been thinking a lot, lately, about whether or not I’m depressed. I posted yesterday about how someone asked me if I wanted to end it all, and how I said NO, in no uncertain terms.

I’m getting ready to go see my doctor in a little bit, and the first time we met, they thought I might be depressed. They told me so, the second time I went to see them.

Here’s the thing: Going to see a doctor who thinks you’ve got a problem, and who is in a position to “do” something about that supposed problem puts me in a precarious position. I’m not a big fan of pharmacological solutions for emotional issues — some people are chemically and clinically depressed, there’s no disputing that. But if I’m not chemically or clinically depressed, but I’m medicated as someone who is, might that not complicate things even more for me – even more than they already are?

I mean, I have a hard enough time keeping up with my life without my senses being dulled and my processing being interfered with by meds. Plus, some anti-depressants have been shown to produce suicidal behavior in some folks. That’s about the last thing I want.

In my seemingly eternal search for what’s going on with me, what — if anything — I can do about it, and how to best make the most of my amazing life, I have found it quite helpful to first seek to understand the underlying facets and aspects of my situation, before coming up with a solution for what appears to be wrong. I’m an engineer by nature, so in order to move forward with courses of action, I need to understand what all is involved, what the different considerations are, and what my desired outcome is.

Here’s what I think about the “depression” that others seem to think they’ve observed with me:

The first time I went to see my doctor, I was in a pretty wary state. I have not had a lot of luck with physicians over the years, and I have a lot of trouble communicating. I am very aware of doctor-patient power dynamics, and the situation tends to make me nervous. I haven’t the faintest idea, sometimes, how to behave in a way that makes a doctor believe I’m a nice person — I get agitated, and when I do, I can get defensive, combative, argumentative, passive, aggressive, non-verbal… you name it. When I perceive myself to be in danger — and going to the doctor sometimes makes me feel that way — my worst symptoms get triggered and I resort to behavior that is not productive. If I could stop myself or alter that, I would be happy to. But when I perceive my personal safety and self-determination to be fundamentally threatened, well, all bets are off.

Anyway, when I’m in this place, it’s not good. And I’m keenly aware of it. So, when I went to see my current PCP for the first time, I was bound and determined to be on my best behavior. My relationships with my 3-4 prior doctors (I’ve had at least that many, over the past 10 years) ended on sour notes, all across the board, and I didn’t want that to happen again. I HAD to at least try to get off on the right foot with this doctor, who was recommended by someone I really trusted (a rare thing). I did not want to completely screw up my new relationship. I wanted to build a working partnership that could really work.

Needless to say, I was a bit stressed, going into the office. I was on high alert, trying like crazy to make sure I didn’t say or do something that would completely irritate, antagonize, and alienate this individual. It was almost like holding down a wild animal … trying to hold back a large, aggressive dog on a leash… All the past failures with doctors kept running through my head, and all I could think was, “Don’t screw this one up… Don’t screw this one up!”

I thought the conversation I had with the doc went really well. I liked them and they seemed really on the ball. Engaging and compassionate and highly intelligent, not to mention a little intuitive, which can be helpful when I’m at a loss for how to communicate to someone. I wasn’t rude, I didn’t say or do something that was completely inappropriate, I didn’t lash out, I didn’t make a snide comment about something that alarmed me, I didn’t make myself look like a total fool. I was poised — I thought — and polite and coherent. I was really happy.

But when I went back, the second time, the doc said they thought I was depressed.

I suppose on the surface it might look that way — apparently low energy,flattened emotional effect, slow responses… Over at The National Institute of Mental Health, they say:

Symptoms include:

* Persistent sad, anxious or “empty” feelings
* Feelings of hopelessness and/or pessimism
* Feelings of guilt, worthlessness and/or helplessness
* Irritability, restlessness
* Loss of interest in activities or hobbies once pleasurable, including sex
* Fatigue and decreased energy
* Difficulty concentrating, remembering details and making decisions
* Insomnia, early–morning wakefulness, or excessive sleeping
* Overeating, or appetite loss
* Thoughts of suicide, suicide attempts
* Persistent aches or pains, headaches, cramps or digestive problems that do not ease even with treatment

And on the surface, it looks like a lot of them could have applied to me.

But check it out — I didn’t have low energy. I had extremely HIGH energy. And I was just trying to keep it reasonably bottled, reasonably civil, reasonably managed. I was irritable and restless, yes, but hell, I was trying to establish a new relationship with a person who ultimately has a fair amount of sway over my life — and in ways I’m not always comfortable with. Plus, the difficulties concentrating, remembering details, and feelings… hello, can we say TBI symptoms? I mean, come on… not every mental challenge is psychological. Sometimes there are logistical and physiological reasons for what goes on with me.

Now, the thought occurs to me that the fact that I’m a long-term multiple tbi survivor could make my anaylsis suspect in the eyes of the experts. After all, I supposedly am brain-damaged or something like that… (to which I reply, “Who isn’t?”)

But if there’s one thing I know, it’s my experience, and as much as the established experts may disagree with my habit of self-assessment and analysis, and they may say I have no standing to diagnose my own condition, the fact remains that there’s a whole lot in my experience that I cannot now — and perhaps never will be able to — express verbally. There is a lot inside me that may never get out. And the people who have the power to medicate me, commit me, lock me up, or tie me down, can never know the full spectrum of feelings and thoughts and experiences inside this singular head of mine.

Anyway, I’m getting all agitated, and I want to chill out before I go see my doc again.

So, I’ll quickly talk about my therapist, who the other day asked if I wanted to end it all.

NO, I didn’t want to end it all. I was tired, I was taxed, I was coming off a neuropsychological testing session that brought me nose-to-nose with some of my most persistent issues and made me feel like crap. Plus, I was having major sensory issues — with my hearing and my vision being so sensitive, they were driving me nuts. And my familiy situation has been tense, off and on, with money being something of an issue, and my job situation being under the gun. I was trying to sort things out in my head, trying to keep my balance, trying to just get clear on some things, and I was feeling physically low. I was also concerned about my safety, since I was driving home later at night, and I’ve been having some problems dealing with the headlights of oncoming cars.

My mind, quite frankly, was really over-taxed with trying to figure so many things out and trying to come to terms with a lot of stuff in my experience that hasn’t been pleasant, but has been… there. If anything, I wasn’t depressed — I was over-stimulated, and I was trying to sort things out. I was trying to just stay chilled and not freak out over all the unknowns in my life. I wasn’t depressed — I was busy thinking things through and trying to keep my balance. Trying to keep civil. Trying to be productive and pro-active. And I was tired.

I think the big reason I get freaked out over the idea of anti-depressant medications, is because the last thing I want/need when I’m in a place like that, is to have my brain slowed down and interfered with. I need ALL my faculties to figure out my life, sometimes, and if I introduce medication that mucks with my mind — even if it makes me feel a little better — then my most important coping tool is compromised. The very thought of slowing down my thinking or interrupting the natural flow of my brain — even if that natural flow is uncomfortable or “depressing” at times — really concerns me, and I feel like my very survival is being threatened.

I can’t just jump on the pharmacological bandwagon, in hopes of patching up little bumps in the road. I need all my faculties, even if they are impaired in some ways at some times, to get by in the world. And if I spend my energy — or divert it — to smooth over the little issues, then the bigger core issues may be overlooked and never constructively addressed.

For those who are in need of anti-depressant medication to get through life… who are otherwise incapacitated by depression and are in danger without intervention, I say “Mazal tov and good fortune to you.”

But when I just seem a little “down”, I’m not necessarily depressed. Could be, I’m just working really hard to keep my head clear and function in a productive, polite, pro-active manner that doesn’t pose a risk to myself and others, because my brain sometimes misfires when it’s under pressure.