Growing up with TBI – The Confabulation Kid

Looking back on my life and comparing notes with others, I realize more and more how much my experience has been impacted by the TBI’s I experienced. I was a pretty wild child — hard to handle and harder to discipline. I tried to be a good kid, for the most part, but I got turned around a lot, and it didn’t work in my favor.

I had real difficulties with keeping facts straight — I thought I had things right, but I was turned around and/or missing vital pieces of information. And in the process, I often looked like I was making things up to get attention or just plain lying.

Head injuries sometimes result in a phenomenon called Confabulationthe formation of false memories, perceptions, or beliefs about the self or the environment as a result of neurological or psychological dysfunction. When it is a matter of memory, confabulation is the confusion of imagination with memory, or the confused application of true memories.

I couldn’t tell jokes to save my life. I would usually forget the punchline, or I’d get the joke all turned around. I would get mixed up in the middle of telling long stories, but I wouldn’t realize it, and my brain would fill in the blanks, itself, so that each time I told the story it was a little different — but I didn’t realize it. In some cases, I actually believed that the inaccurate details I was providing were very true.

I have very clear memories of my parents questioning me over and over about the details of a story I just told them, but I would get confused, the more they questioned me, and they would end up — gently or brusquely — telling me that I wasn’t supposed to fib or lie. I wasn’t intentionally lying. In fact, I had no awareness that the tale I was telling was anything other than the truth. But I came across as an intentional “fabulist” instead of a confabulating kid.

I also had a perception of myself as being really good at sports, when I was little. But I was actually very uncoordinated and klutzy, and I was often picked last — or almost last — at schoolyard games. For some reason, this didn’t sink in, and I was able to convince myself that I was very, very good at the sports my other siblings found easy to play. I wanted so much to be good at sports, to be part of things. Both my parents were athletic and active, and I wanted to be, too. All the other kids could kick the ball in kickball… why couldn’t I make contact? It didn’t make sense to me. As far as I was concerned, I was perfectly athletic and able to perform.

Now, on the up-side of this “athletic confabulation”, this skewed perception of my physical skills, my oblivion to how uncoordinated and klutzy I was made it possible for me to keep at all the practicing, until I acquired some skill. One thing I will say for my parents is that they never discouraged me from playing sports, even when I looked like a dork and made a fool of myself. They just told me to get back in there and keep trying. Eventually, I would get it. And when I moved on to high school and started running cross country, I was the team captain two years in a row and led my team to the districts and state championship competitions. We didn’t win states, and we didn’t win districts, but we placed high enough to be serious contenders. And this at a time when running was not all the rage, and we were just a rag-tag bunch of kids in shorts and sneakers out on the open road…

When I was little, I also got roughed up a bit by kids who were bigger (and meaner) than me, but I told myself they had done it by accident. I wasn’t very good at deciphering what other people were thinking/saying about me — I was a lot slower in many ways than I admitted. But looking back now, I realize that a whole lot of social information went right over my head because I had such a skewed view of myself — I didn’t realize that I wasn’t following, so I never stopped to ask people what they meant when they were talking to me. If I hadn’t been head-injured, I might have been considered delusional. But I’d fallen and gotten hit in the head, and that definitely had an impact.

It had an impact on my perception of myself. It had an impact on my ability to track information and keep it straight in my head. It had an impact on my socialization, as I was often seen by my peers as a bragger or an exaggerator and ostracized over the years… simply because my brain was giving me false information.

I remember one time, in particular, when I was in fifth grade. My family had recently moved from a small city to the country, and I was acclimating to a rural environment from an urban one. I was desperately homesick for “the city” and I was angry a lot with kids around me for not having the same mannerisms as I. One day in class, I was telling everyone about my favorite thing to do — drive across a bridge that spanned a wide river. My dad had told me that it was very long — I think he said it was something like a mile wide? But my brain translated “very long” to “seven miles long” and I was convinced that the river was seven miles across and the bridge was too.

When I told the class that, my teacher tried to correct me, but I refused to be corrected. My brain told me the river is very wide — very wide means seven miles across, and that’s how it is. Nothing that anyone said could convince me otherwise. Not logic. Not reasoning. Not authority. I was convinced that I was right, and there were no two ways about it. The rest of the class thought this was hilarious, and didn’t hesitate to laugh at me. I wasn’t sure what I’d done wrong — only that everyone was mocking me, and once again, I was an outsider without a clue.

Looking back, I think that this confabulation business made my childhood a lot more difficult for me than I ever realized. My whole family is full of story-tellers, and they love to share their experiences. I’m the same way. I love to tell a good story, and I have lots of unusual experiences under my belt. I always have.

But time after time, when I would tell stories about my day in school or something that happened to me, I would get turned around, miss details, turn facts around, get mixed up, and generally make a mess of things. On good days, people realized I was just confused. On bad days, they clearly thought I was lying. And I could happily go the rest of my life without my parents, grandparents, siblings, aunts and uncles, (and nieces and nephews) looking at me like I’m making stuff up “again”.

Yeah, it was kind of rough, living with that undetected weakness. And being treated like I had done something wrong (intentionally) when I honestly didn’t realize that something was wrong, has probably stymied me more than just about anything in my life. In fact, one of the dominant themes in my life has been feeling like I was being punished for no reason that I could understand — and being disciplined for “lying” and having others laugh at me, roll their eyes at me, and generally treat me like I was a pathological fabulist who couldn’t be trusted with the truth was a regular part of my childhood experience. I wanted to tell the truth. I wanted to tell a good story. I wanted so badly to do the right thing and get it right, just once… But I failed. Time after time, my broken brain failed me.

And the times when I did get it right, well, that didn’t really count, because that’s what I was supposed to do. What did I want — a medal for just doing things the same way everyone else could?

Now, I’m not looking for pity or sympathy — please just understand what that experience was like. Especially if you know a kid who has had a head injury … or who just looks like a pathological liar/fabulist, but doesn’t appear aware that they’re doing anything wrong. Chances are, they are not trying to lie. They might be, but then again, they might just be confabulating. Like I was.

Again, they might have no clue that they’re doing anything wrong. They may just need some extra help understanding that they’re turned around and they need extra help figuring out the way things really are…  the way things should really be said/told/expressed. If they’ve had a head injury of some kind, it could be that their broken brain is hiding from them the fact things are amiss… and they can’t figure out why everyone is always laughing at them.

Or what they’ve done wrong. Again.

One Potato, Two Potato… A Tale of a Temper Flare

It was such a small thing. It was no big deal. So, I dropped the potato on the floor. So it slipped out of my hand and got away from me. I didn’t really need to flip out and slam the potato peelings into the trash can and curse a blue streak. I didn’t need to startle my partner and frighten them with the intensity of my reaction.

But from the way I lashed out after I dropped the potato, you’d think it was a huge deal. My temper flare was totally out of proportion to what happened, and I was totally unable to stop it. And that’s what drives me crazy.

Once again, I have overreacted extremely to a seemingly minor annoyance, turning a proverbial molehill into a mountain — no, a volcano. My partner is steering clear of me for a while, till I simmer down. My blood is pounding in my ears, I’m sweating like I’ve just run a hundred yard dash, and my head is spinning with the sudden crash of waves of unexpected emotion on my once-staid interior. Dinner might turn out okay, but the evening is pretty much ruined.

And I am humiliated.

It started out so simply. I had a long day at work, and I was looking forward to just chilling out, making my signature dish for supper — meatloaf with mashed potatoes and green peas. I don’t have the biggest cooking repertoire, and my partner usually does the cooking, but for some reason I make a killer meatloaf. After the long day I’ve had — no, a long week — tonight I need some serious comfort food.

I had intended to take off early and get home at a decent hour, but I got tied up at work with some last-minute things I needed to take care of. Running later than expected, I called my partner to say I was running behind, then did some shopping on my way. I picked up the 93% lean ground beef, egs and milk, and some extra celery, then waded through late-rush-hour traffic, and finally got home. Not bothering to change out of my work clothes, I rolled up my sleeves, chopped and mixed and patted together a pink loaf of beefy joy that would soon enough brown to perfection. I was running behind where I had hoped I’d be, but in another hour and a half, all would be well.

While the meatloaf was cooking, I turned my attention to the potatoes, and I suddenly remembered I’d intended to pick up some fresh spuds at the grocery store. A sudden flare of irritation rose in me, but as I picked through the potatoes we did have on hand, I found enough that were still in good enough shape to eat. As I rinsed them under cold water and shaved off their skins, I was having trouble hanging onto them. I could tell I was pretty tired from the day. The oblong shapes were slippery in my hands and I had to really concentrate at keeping hold of them, when I didn’t have rough potato skin to grip for traction. The peeling knife was slippery in my hands, too, and I struggled a bit with carving out the eyes and removing skin from tight crevices and wrinkles in the flesh.

As I turned away from the sink with one of the skinless tubers in my hand, suddenly it jumped from my grip. I tried to catch it as I felt it slide from between my fingers, but it escaped and landed with a thud on the linoleum and skittered away from me, as though it had a will of its own.

In an instant, my whole system was flooded with a sudden cascade of intense emotion. I could feel the blood rise in me, an adrenaline cocktail of volatile biochemicals boiling up at a moment’s notice, and I saw red for a split second. I felt something vicious in me coil and uncork like a thunderclap, and all I wanted to do was stab that fucking potato with the peeler I was wielding. In my mind’s eye, I saw myself stab it viciously, without hesitation or remorse, till it lay in shredded fragments before me.

“FUCK!” I fumed. “GODDAMN IT TO FUCKING HELL. MOTHERFUCKING PIECE OF SHIT! FUCK YOU! FUCK YOU!” I cursed the tuber. The unnamed thing that had coiled and unsprung inside me started to thrash, like a wild animal caged and prodded with an electrical probe. My gut churned with fierce lust for vengeance, and my head suddenly cleared of everything but a cold, cold drive to annihilate. Reaching for the nearest thing, I snatched up a handful of potato peelings from the sink and slammed them into the nearby trash can. Some of the peels slipped from between my fingers, and I pounced on them like a ravenous predator. I dropped to my knees — work clothes and all — and with tightly closed fist, I pounded them on the floor, as the inside of my head roared with rage. “STAY THERE, YOU GODDAMNED COCKSUCKING PIECE OF SHIT,” I hissed at the inert piece of vegetable peel. “DON’T FUCKING MOVE.

The potato peel obliged me and lay still on the floor in front of me. The inside of my head howled with frustration and rage, and I snatched up the offending object and threw it violently in the trash atop the rest of the peelings. My breath was heavy and ragged, and my torso was tracked with rivulets of sweat that descended from my chest and armpits to my belt. The whole kitchen seemed to shift and sway before me, and the overhead light became unbearably bright.

Behind me, I heard a sound, and my partner appeared in the doorway.

“Are you alright?” they asked, as I picked myself up off the floor and crossed the room to pick up the potato that had slipped from my grasp.

“I’m fine,” I muttered, as I snatched up the maverick spud and turned back to the sink to rinse it off. The rage that had torn through me just moments before suddenly receded with the presence of another person in the room. The part of me that knew that losing my grip on this slippery vegetable didn’t warrant the firestorm I’d unleashed perked up and pulled me back from the brimstone brink of my outrage.

I felt my partner’s eyes on me, but I couldn’t make eye contact. Their gaze followed me back to the sink, with an all-too-familiar sense of apprehension and defensiveness. This was not the first time I’d blown up after a long day at work, and I was pretty sure it wasn’t going to be the last. I could feel the recrimination in their eyes — What are you getting so upset about? Why did you freak out over just dropping the potato? What’s wrong with you? Why are you so … violent? I knew all the questions, but I didn’t know the answer. All I knew was, I had been overcome by a wave of emotional overreaction that — once again — had blindsided me and reduced me to a big baby — pitching a fit over some stupid little thing and making me look like a raving maniac. For nothing.

As I ran water over the potato and I nearly lost my grip again, another smaller wave of anger welled up in me, but I held it back. I could feel my partner’s eyes still on me, watching to make sure I wasn’t going to get out of hand and break something. I’ve broken things in the past, slammed things, thrown things – the cracked dustpan that we keep in plain view in the kitchen is a constant reminder of how intensely my temper can flare, and how violently I can become as a result.They needed to make sure I wasn’t going to wreck anything in the kitchen.

Again.

I willed myself to act as though I were once more calm, and as I systematically went through the motions of cutting the last remaining potato into quarters, my partner’s wary curiosity was satisfied, and they disappeared again into the living room. Quiet… they were quiet in that way they get when they’re afraid of me and unsure about how the rest of the evening is going to go. I was quiet, too, willing my system to chill and not radiate the white heat of unprovoked rage that my partner can instinctively sense.

But though I seemed fine on the outside, inside part of me was still writhing. Still smarting. The crash of the rage felt like it had cracked something in me… as though a heavy anvil had fallen onto my foot, cracking and breaking bones… bones I needed so I could walk the rest of the way through my day. Something in me felt bruised and battered, but the hurt had come from inside my system, not outside me. And I had been defenseless against it. If the attack had come from someone or something beyond my own skin, I might have been able to defend myself. But this attack came from the inside, and it hurt as much as if I’d been jumped in an alley and beaten by thugs.

Yes, this attack had come from inside. From the depths of my being, the core of my character. At least that’s how it felt. I felt damaged and inept. Useless and beyond help. My insides felt sick and worried. All this drama over a little potato… All this rage over some stupid couple of minutes of me losing my grip… in more ways than one. “What’s wrong with me?” I wondered “Why can’t I deal with something that simple? My partner doesn’t seem to have this problem. Why do I?

Keeping quiet, keeping to myself, I adjusted the setting of the burner beneath the boiling potatoes and headed upstairs to change my clothes. The best I could hope for, was that my meatloaf would redeem me, and that the food I was preparing would be more comfort for the one I loved, than my own self was, that night.

Snap! Anatomy of a TBI temper flare

If you’re a TBI survivor, you may be very familiar with the flares of temper that can sneak up on us unawares. It is very disconcerting, if you’re a pretty even-keel sort of person, or if you really don’t want to pitch a fit, but find yourself flying off the handle against your own will.

This has happened to me as long as I can remember — temper flares that come out of nowhere and decimate not only my relationships with people around me, but my self-esteem and self-confidence, as well.

I recently wrote a post called One Potato, Two Potato… that talks in greater detail about my experience of an intense temper flare that builds up over time.

I actually have identified a number of different kinds of flares I experience:

  1. Flares that originate inside me – and come up suddenly without any warning
  2. Flares that originate inside me, but percolate and develop over time, till I boil over. (That’s what One Potato, Two Potato… is about)
  3. Flares whose source originates very suddenly outside me – they’re knee-jerk reactions to external conditions that actively provoke me.
  4. Flares whose source comes from outside me that percolate slowly until I boil over.

There are other ones, as well, and I’m devoting a fair amount of my time, these days, to thinking about them. Of all the cognitive-behavioral issues I have, my temper flares are some of the most challenging. And since so many people reach this blog by searching for info on TBI and temper, I know I’m not the only one.

For the uninitiated, here’s a general description what happens in one of my TBI temper flares, how I deal with it, and how I pull out of it:

  1. I have a goal in mind — it can be as simple as picking up a pencil, or as complicated as making a three-course dinner.
  2. I turn my attention to the thing I want to do… think about doing it… think about not doing it… and then I decide to do it.
  3. I shift into gear — I reach for the pencil… or I start peeling vegetables for cooking.
  4. Suddenly, something stops me — I drop the pencil, or a potato slips out of my hand and skitters across the floor.
  5. A sudden wave of violent emotion sweeps through me, like a wildfire through dry California underbrush. My eyesight dims briefly, as my heart pounds and adrenaline floods through my veins. I want to strike out, lash out, hurt whatever is getting in my way. I curse the pencil… or I feel a sharp stab of rage directed at the potato. If I were able to kinesthetically direct energy at will — and if my temper had its way — the pencil or the potato would be a smoking little pile of ashes.
  6. In the back of my head, the calm, collected voice reminds me that it’s just a pencil or a potato, and that no one was harmed by this thing slipping out of my hand. I don’t need to strike out and harm anyone, just because I lost my grip.
  7. The part of me that doesn’t care for these temper flares is mortified at my intense reaction. It’s deeply ashamed that I would get so worked up over such a little thing. So what, if the pencil or the potato got away from me? What’s the big deal? The wild animal part of me that flared intensely is cowed and tries to defend its reaction, but when the logical, sensible, even-keeled part of me prevails in its reason, that little animal part of me slinks away to a corner to lick its wounds and chastise itself for being bad… again.
  8. In an attempt to de-escalate my just-add-water instantaneous rage, I pause and take a measured breath. I turn my focus back to the basics — the simple act of picking up the pencil… retrieving the potato from the other side of the kitchen. I focus on the most basic aspects of the moment, waiting till the rage subsides and I can get back to doing what I started out doing.
  9. If all goes well, I can continue with my task and not suffer too much at the hands of my self-recrimination. If things aren’t going well, like if I’m stressed or fatigued or scattered, I may throw something or curse or hit something or lash out… with the consequence of not achieving what I intended to achieve, and descending into a downward spiral of shame and blame and guilt and embarrassment. If I’m lucky, no one is around to see this. If I’m out of luck, someone I love and care for is nearby and is strongly impacted — and quite negatively so — by my sudden rage.

Now, I’ve noticed that if I have built up a lot of momentum around Step 2, my rage response is much more intense, than if I proceed with measured pace, taking things one at a time. I also need to be careful not to indulge every reaction that comes to mind.

It’s helpful if I can sit back and just observe myself, not participate 100% in the whole unfolding drama. But observation doesn’t always work. Especially if I’m tired.

Over the coming weeks (early 2009), I’ll be writing more on this. It may be helpful to others who are dealing with the challenges of TBI temper flares… with greater or lesser success. In fact, some folks have said that what I’ve written so far, is very helpful to them, so it’s my hope that I can help more.

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Thoughts on the importance of a gender-free TBI blog

I’ve had different people who read this blog take guesses at whether I’m male or female. Some folks deduce that I’m male, perhaps because of the types of injuries I talk about — sports concussions sustained during soccer and football — or perhaps because… I’m not sure why else they think that. Others assume that I’m female because of the words and punctuation I choose to use.

To be honest, I had agonized over whether to blog “less anonymously” from the viewpoint of a specific gender. It seems to me that some men can better hear about certain kinds of information from other men, while some women are more comfortable hearing about experiences from a woman’s point of view. (Sorry if I’m being sexist with my generalization…) And certainly, each end of the gender spectrum has its specific challenges with respect to getting along in the world, so identifying my gender when I blog might help one side, while it might put the other off a bit — or at least shade their perception of me.

But the more I thought about it, the more it occurred to me that gender can really get in the way when talking about TBI — and considering that there does seem to be such a discrepancy between the numbers of men/boys who sustain head injuries and the numbers of women/girls, I didn’t want to serve one side, and possibly detract from the other. Both sides have needs as TBI survivors which are largely misunderstood and unmet in today’s American society.

Traumatic brain injury is an equal-opportunity destroyer… and at times the way it changes the brain can kind of cancel out the societal/cultural training we have as men and women, when it comes to social interaction and personal habits. Slowed processing speed is slowed processing speed, whether it happens to a girl or a boy. Increased distractability is still a problem, whether you’re male or female. And a damaged short-term memory will impact you no matter what your biology is.

Certainly, each gender with its relative socio-cultural imprinting will respond to TBI differently. Men are trained to behave in ways that can really help you function in spite of mild TBI — the habit of just keeping going, no matter what, which is pounded into men’s minds from an early age, certainly makes it possible to keep soldiering on through after a head injury. And women are taught to interact with others in ways which can offset the impact of brain injury — being taught that it’s okay to be vulnerable, to reach out for help, and “tend and befriend” can really go a long way towards lightening the burden of a cognitive deficit.

But it’s my experience — and my observation — that for all our external/public/social/cultural training about how to go through life, TBI (even mild TBI) can wreak untold havoc in your internal world, where all the cultural conditioning in the world can’t reach. When your brain is broken and things are not firing as they should, even the most ingrained culturally conditioned processes can break down. What’s even worse is when on the surface you appear to be dealing just fine, ’cause you’re following rote social protocol with other people, but inside you’re a tangled mess of emotion and confusion and nothing makes any friggin’ sense.

In fact, what (I’ve found) makes surviving a TBI the hardest is being completely and totally unable to deal (on the inside) with the things life throws at me on the outside. Here, I’m falling to pieces, trying to just keep up, while everyone around me is crowing about how cool I look, ’cause I’m behaving like a typical person would. It drives me nuts. I’m following the rules of engagement to keep socially viable, and it’s working, yet inside I feel like I’m losing my mind… no, wait… like I’ve already lost it. But nobody notices, ’cause I’m behaving like they would expect someone of my gender to behave… or at least a fully functioning adult with a few slight gender variations.

So, in the spirit of respecting and honoring the mystery of the brain … and recognizing that what goes on inside our injured heads is often quite different from what we present outside our bodies … I’m going to keep this blog gender-free and talk about my experiences not as a man, not as a woman, but as a person. Someone who may seem quite “together” on the outside, but has a heck of a time keeping things in line on the inside. Someone who has a lot in common with millions of other TBI survivors — be they men or women — because my gourd got rattled pretty badly a bunch of times and shifted the direction of my life irrevocably. And someone who has something to offer — tales of survived experience, regardless of the body I was born in.

Thoughts on the importance of a gender-free TBI blog

I’ve had different people who read this blog take guesses at whether I’m male or female. Some folks deduce that I’m male, perhaps because of the types of injuries I talk about — sports concussions sustained during soccer and football — or perhaps because… I’m not sure why else they think that. Others assume that I’m female because of the words and punctuation I choose to use.

To be honest, I had agonized over whether to blog “less anonymously” from the viewpoint of a specific gender. It seems to me that some men can better hear about certain kinds of information from other men, while some women are more comfortable hearing about experiences from a woman’s point of view. (Sorry if I’m being sexist with my generalization…) And certainly, each end of the gender spectrum has its specific challenges with respect to getting along in the world, so identifying my gender when I blog might help one side, while it might put the other off a bit — or at least shade their perception of me.

But the more I thought about it, the more it occurred to me that gender can really get in the way when talking about TBI — and considering that there does seem to be such a discrepancy between the numbers of men/boys who sustain head injuries and the numbers of women/girls, I didn’t want to serve one side, and possibly detract from the other. Both sides have needs as TBI survivors which are largely misunderstood and unmet in today’s American society.

Traumatic brain injury is an equal-opportunity destroyer… and at times the way it changes the brain can kind of cancel out the societal/cultural training we have as men and women, when it comes to social interaction and personal habits. Slowed processing speed is slowed processing speed, whether it happens to a girl or a boy. Increased distractability is still a problem, whether you’re male or female. And a damaged short-term memory will impact you no matter what your biology is.

Certainly, each gender with its relative socio-cultural imprinting will respond to TBI differently. Men are trained to behave in ways that can really help you function in spite of mild TBI — the habit of just keeping going, no matter what, which is pounded into men’s minds from an early age, certainly makes it possible to keep soldiering on through after a head injury. And women are taught to interact with others in ways which can offset the impact of brain injury — being taught that it’s okay to be vulnerable, to reach out for help, and “tend and befriend” can really go a long way towards lightening the burden of a cognitive deficit.

But it’s my experience — and my observation — that for all our external/public/social/cultural training about how to go through life, TBI (even mild TBI) can wreak untold havoc in your internal world, where all the cultural conditioning in the world can’t reach. When your brain is broken and things are not firing as they should, even the most ingrained culturally conditioned processes can break down. What’s even worse is when on the surface you appear to be dealing just fine, ’cause you’re following rote social protocol with other people, but inside you’re a tangled mess of emotion and confusion and nothing makes any friggin’ sense.

In fact, what (I’ve found) makes surviving a TBI the hardest is being completely and totally unable to deal (on the inside) with the things life throws at me on the outside. Here, I’m falling to pieces, trying to just keep up, while everyone around me is crowing about how cool I look, ’cause I’m behaving like a typical person would. It drives me nuts. I’m following the rules of engagement to keep socially viable, and it’s working, yet inside I feel like I’m losing my mind… no, wait… like I’ve already lost it. But nobody notices, ’cause I’m behaving like they would expect someone of my gender to behave… or at least a fully functioning adult with a few slight gender variations.

So, in the spirit of respecting and honoring the mystery of the brain … and recognizing that what goes on inside our injured heads is often quite different from what we present outside our bodies … I’m going to keep this blog gender-free and talk about my experiences not as a man, not as a woman, but as a person. Someone who may seem quite “together” on the outside, but has a heck of a time keeping things in line on the inside. Someone who has a lot in common with millions of other TBI survivors — be they men or women — because my gourd got rattled pretty badly a bunch of times and shifted the direction of my life irrevocably. And someone who has something to offer — tales of survived experience, regardless of the body I was born in.

Shout-out to the guided imagery folks

Belleruth Naparstek has noticed this blog and has nice things to say about it, which is really very gratifying.

I’ve been using her guided imagery for about couple of years now, and if anything has helped me to come to terms with the complications and hurdles of my TBIs, it has been her Healing Trauma and Stress Hardiness Optimization CDs. I owe her a great debt for her assistance, not least of which because the CDs are self-manageable… as in, I don’t have to endure an in-person session with someone else, I can start and stop them and listen to them as often or as seldom as I like, and I can be totally under the radar when I use them. For all anyone knows, I’m just listening to a relaxation tape or music at work — Note: I only listen to the affirmations at work, as the guided imagery tends to put me into a super-relaxed state, which is not what I need at work.

Personally, I have historically tended to steer clear of guided imagery and meditations. They often strike me as smarmy or condescending or namby-pamby. They often make me feel like the narrator is talking down to me or over-simplifying things. As a TBI survivor, I’m particularly sensitive to being talked down to, so that gets in the way.

Plus, I have trouble hearing at times, and some voices really grate on me. Belleruth’s narration, however, really works for me. I’m able to understand her words, even when I have the sound turned down really low, which I often have to do, ’cause my hearing is very sensitive when I’m stressed. It took a little while to get used to how she pronounces “worry” and “courage”, but after a bunch of times listening, I could eventually deal with it 😉

It might not for everyone, but I gotta tell you, it’s like some kind of magic bullet. Amazing stuff. And it doesn’t make me feel like a total idiot, which is a plus.

I’ll explain more how I think it’s helped me. The mechanics are pretty fascinating. I’m not formally trained in this stuff, but I can definitely relate the details my experience that might help folks understand — and make use of this invaluable resource.

EEG and MRI are both normal!

Woo hoo!

I had a visit with my new neuro on Monday, and they tell me that my EEG and MRI both read as NORMAL.

There is no sign of a brain tumor.

There is no sign of MS.

There is no sign of degenerative disease.

I’m way symmetrical and looking good.

At last, I’ve got some actual testing and numbers to show for all this. Enough of the guesswork — I’ve got plenty of notes and detailed observations about my life, but no doctor apparently has the time or inclination to sort through them all.

Plus, with my over-the-top attention to detail and fixation on things that are experientially important (but probably medically insignificant), who knows if anything I’ve recorded is even any use to them at all?

God, I love minutiae. But it doesn’t love me 😉

Anyway, I’m trying really hard to stay positive through all this. I think that part of me would have liked to see at least a little bit of “variation” on my test results, so I have concrete proof that something unusual is “up” with me.

But this is actually one of the things that makes TBI such a conundrum for folks — both medical doctors and people who experience it. Your test results can come back looking great, your CAT scan, your MRI, and your EEG can all come back normal. But there are real issues hidden under the surface that emerge over time and with varying degrees of difficulty.

And those issues can look like seizures or mental illness or ADD or OCD or some of the other “alphabet” conditions that are swimming around out there.

Or, worst of all, they can be interpreted as a lack of will, being a “bad seed”, being “sinful”, or old-fashioned “character defects” that have little or nothing to do with character and have everything to do with the brain not behaving as it should.

And it can make you crazy. Personally, I wouldn’t be surprised to learn that mental illness can emerge as a result of the stress and strain of dealing with TBI… with or without knowing it.

Well, I would love to write more… and I really want to. But I’ve got to get ready for work and stop at the bank to close the business bank account I opened back before I realized that I wasn’t nearly as capable as I thought I was, and my MBTI was propelling me forward in life, fueled by anxiety, drive, aggression, and a deep-seated need to prove to myself and the world that I was really doing very well… when in fact, I wasn’t.

I know now that the complicated tasks involved with running a business are well beyond my broken brain. I may be able to get back some of my functionality with some speech/occupational therapy, but that’s a ways off in the futur. Right now, it’s time for me to let go of that unrealistic drive and work with the limitations I have. In a way, it’s a huge relief. There are plenty of other ways I can prove my self-worth to myself and the world that don’t involve adminstrative paperwork and filing quarterly taxes 😉

Note: This was cross-posted at Daily Strength

Center helps with psychological health, traumatic brain injury

A new 24-hour outreach center now provides information and referrals to military service members, veterans, their families and others with questions about psychological health and traumatic brain injury.

Operated by the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, which falls under Tricare Management Activity, staff at the center are available around the clock, 365 days a year, by phone at 866-966-1020 and by e-mail at resources@dcoeoutreach.org.

“We’re providing 24/7 support to assist callers with questions regarding psychological health and traumatic brain injury,” said Brig. Gen. Loree K. Sutton, M.D., director of DCoE. “Getting the best possible information and tools, hassle-free, will empower and strengthen warriors and their families to successfully manage what can be confusing and disturbing circumstances.”

The center can deal with everything from routine requests for information about psychological health and traumatic brain injury, to questions about symptoms a caller is having, to helping a caller find appropriate health care resources.

Read more here…

Prepping for my neuro visit tomorrow

I’ve got another neuro visit tomorrow — this one is finally a substantial one, when I’ll actually be reviewing the results of my MRI and my EEG. It’s been about a month since I got my MRI, and it’s been nearly 3 weeks since my EEG, and the suspense has been really intense at times.

In my more dramatic moments, part of me thinks, “Today is the last ‘normal’ day/week of my life.” And I get all worked up, thinking that these test results might come back with terrible news or some sign of a horrible condition/disease/tumor/whatever that will sideline me permanently — or at least turn my life into one big detour.

I worry that I won’t be fully functional anymore. That I’ll have to invest all this extra time and energy in overcoming a real issue that I’ve blissfully ignored for a long time. That I’ll be officially disabled. That I’ll be “less than human” and have to live a second-rate life as a result of what the pictures of my brain show.

I also worry that they won’t find anything at all… that I’ll turn out to be crazy and people will look at me like I’m just looking for attention… making things up… malingering… defrauding professional service providers.

Worst of all, I think, would be getting inconclusive results that will waylay my energy and keep me pre-occupied trying to track down the root cause of stuff that’s been getting in my way for a long time, but I’ve been able to brush off and minimize until the past year or so.

I’d almost rather get no results than inconclusive ones. But whatever happens, happens. And I’ll just deal with whatever comes up. I always do.

This waiting around for test results is really exhausting. Especially since I never got any medical attention for any of my multiple TBI’s, and I don’t have a lot of reliable medical records describing my symptoms and issues in medical jargon-y detail. I’ve never been able to articulate my issues to doctors with any level of accuracy, and most of the time, I’ve just given up and said, “Oh, forget it — it’s not that bad, really…” and went off to lick my wounds where I was safe and warm and able to tend to myself and my problems on my own terms.

I swear, this cognitive-challenge/communication-difficulty stuff just makes me nuts. I have a hell of a time articulating my issues out loud to doctors, who are all too often looking for medical data and/or some Latin-based vocabulary in order to properly assess my situation. I don’t know Latin, and I don’t have medical records that show evidence of my injuries. All I have is my life experience and a muddled, garbled mish-mash of out-loud observations that don’t come across right, when I’m talking to someone who doesn’t know me personally (and even if they do, can’t for the life of them imagine that I’ve actually been injured). Absent concrete data, I’m out of luck… so, I’ve been largely resigned over the years to just being out of luck.

Oh, well… what’s next? Life is waiting…

But tomorrow, I will actually be having a discussion with a doctor about real, honest-to-goodness medical test results. Imagine that. I am really looking forward to it. I’m looking forward to it so much that I’ve been studying up on MRI’s and EEG’s and learning to recognize what they show.

I found a couple of great sites for learning about them — with plenty of pictures, which I desperately need.

There’s the section on Electroencephalography and Evoked Potentials followed by their Electroencephalography Atlas over at Medline. I have been studying the page on Normal Awake EEG
so I know what I’m looking at, when the doctor shows me what’s going on with me. I’m studying the normal EEG, as well as other types, so I can tell the difference — if there is any — between what my EEG looks like and what a normal one would look like.

Normal Awake EEG - A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

Normal Awake EEG : A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

I’ve also been studying MRI’s over at Harvard’s Whole Brain Atlas, which shows what a normal MRI looks like — with the different slices — so that when I look at my own MRI, I can see if/how it differs from how it “should” look.

The Whole Brain Atlas

They have MRI slices from different scenarios —

  • Normal Brain
  • Cerebrovascular Disease (stroke or “brain attack”)
  • Neoplastic Disease (brain tumor)
  • Degenerative Disease
  • Inflammatory or Infectious Disease

And you can look at the slices from different angles, which is way cool!

I’ve been studying the normal brain MRI slices, so I am better able to understand what — if anything — is wrong with my gourd.

Now, on a wireless or dialup connection, the images load a little slowly, but on broadband/cable modem, they’re speedy.

Okay, so I know I’m a bit of a nerd/geek, but this just fascinates me. I’m also studying EEG electrode placement patterns, so when I look at my own EEG, if there is any abnormal activity, I can see what area of my brain it takes place in.

Electrodes are placed on 10-20 different areas of the scalp, and they’re lettered/numbered by position. F means Frontal Lobe, T means Temporal Lobe, O means Occipital Lobe, P means Parietal Lobe, and combinations of them mean the electrodes are getting data from more than one lobe. The numbers are odd on the left side of the head and are even on the right side. Here’s an image I’ve been studying:

eeg electrode placement - click to enlarge

I think it’s fascinating. And I have a lot to learn. I think I’ll get myself a balloon and blow it up, then write all the electrode numbers on the balloon with a permanent marker, so I have a 3D version of the placement to take with me to the doctor. I’ll let the air out of the balloon, so I can take it with me easily and then blow it up at the doctor’s office so I can see what’s up, when they start talking about the different readings of my brain.

Of course, this may be moot, if my EEG comes back perfectly normal, but in case it doesn’t, I would like to understand where/how/why things are ‘off’ with me… what it means… and if/how any of my prior TBIs have specifically impacted certain parts of my brain.

This stuff just fascinates me. It’s a lot to take in, and it can actually be pretty serious, but for now I’m going to entertain myself… not to mention distract myself from all the different scenarios my broken brain is coming up with.

Sometimes the inside of my head is a scary place to be.

A Perilous Relief : Because Extreme Duress Makes Me Feel Better

Thinking back over the course of my life, to all those times when I pushed myself, stretched myself, and in some cases really punished myself to get to a goal, I can see discernable patterns in my behavior:

  • I am presented with a variety of choices about people and activities and jobs.
  • Some of the choices are positive, pleasant, benign.
  • Other choices are more challenging, distasteful, and carry the threat of some ultimate negative consequence.
  • I know I have positive, pro-active options available to me, but time and again — against my better judgment and experience — I choose the lesser of the options and plunge myself into yet more chaos.
  • Sometimes things go well, and I reap the rewards for overcoming the challenge.
  • But other times, I burn out, flame out, crash and burst into a veritable brilliant fireball that can be seen for miles.
  • Friends, family, coworkers all scratch their heads and puzzle at my poor decision-making, my risk-taking and danger-seeking behavior that endangers my professional reputation and my social and financial viability.

I’ve been puzzling and puzzling over these patterns of mine for the longest time, trying to figure out why I’ve apparently been unable to learn from my past mistakes… always thinking, this time will be different… but it never is — it actually gets worse. Given my life experience, my intimate knowledge of my limits, and my determined commitment to self-care and peak performance, there is no way I should be doing these kinds of things and making these kinds of “mistakes” over and over. I’m not an idiot. I know better. I’m not mentally ill (from all indications 😉 and I always start out with the best of intentions.

What’s the attraction of danger? What’s the allure of risk? I’m not the kind of person who seeks out thrills and chills — I hate suspense movies and I shudder at the thought of skydiving or rock climbing — even with ropes. What’s wrong with me, that I continuously put my own professional and social well-being on the line, time after time? Am I addicted to adrenaline? Am I hopelessly brain-damaged, thanks to my multiple tbi’s? Is there some fundamental flaw in me that seeks out its own destruction, time after time, and wants to secretly destroy all the progress I’ve made over the years?

What about emotional issues? You might ask… I ask myself the same thing, at times. I have been known to keep busy-busy-busy to keep my mind off painful or uncomfortable thoughts. But I have dealt with a lot of my personal issues that used to get in the way, and it’s been years since I genuinely wanted to run from myself. I’m healthy. I’m happy. I don’t do drugs or drink alcohol. I am not running willy-nilly from old ghosts like I used to, and I’ve dealt with many emotional and psychological aspects of my past in a productive and definitive way.

Well, then, what about being addicted to an adrenaline high?1 I’m not sure how that’s possible. I don’t crave thrills like skydiving and freestyle skiing. I’m not fond of courting danger – like some of my siblings do. The very idea of taking extreme chances makes my blood cool. I’m a homebody who likes a quiet life. I’d rather curl up with a good white paper on cutting-edge neurological research than go mountain biking in the Grand Canyon around sunset.

So, why the hell do I do these stupid-ass things, time and again? What is it — really — that makes me make such risky social and professional choices and screw up so dramatically on such a regular basis?

In stepping back from my personal perspective, looking at all the objective data about my life, and then thinking about not only the things that went wrong, but the things that went right while things were going wrong, I’ve realized I actually feel better when I’m under a lot of stress and strain. And the higher the intensity of my stress experience, the better I feel.

I believe, based on my own observations about my life, that beyond the most obvious components in in my decision-making process, there’s something else at work. Something not cognitive, not emotional, not psychological, but something physical. Could it be that risk-taking / danger-seeking behavior meets a basic, fundamental physiological need in me which persists in spite of better judgment and deliberately broken bad habits? Could there be something about the experience of dangerous risk that – rather than boosting me into a super-human experience – supports me in having a normal human experience?

I’ve gradually come to realize (after untold hours of reflection and consideration and painstaking — and sometimes maddening — rehashing of patterns and details) that I need stress in order to function properly. I don’t seek it out in order to pump up an already fully functional system. I seek it out in order to bring a struggling system up to par, so I can participate normally in the world and have the kind of regular life that other people take for granted.

Not being in the same room with you, I can only guess at your reaction. But I suspect it’s one of skepticism and incredulity. Why on earth would someone need stress, in order to function? Why would they need to take risks and seek out danger, in order to live a normal life? Isn’t this a little… hyperbolic?

Since you’re not in the same room as me, and you aren’t privy to my personal experience, I’m not sure I can explain this exactly. But I’ll try…

1 Note: From where I’m sitting, using the common “addicted to thrills” metaphor implies that the high you’re getting is not necessarily something you need. It’s superfluous, it starts out as recreational, then you develop an irrational need for it, a destructive need for it. The terms “adrenaline junkie” and “addicted to thrills” carry pejorative connotations, as well, which I feel are not very helpful in understanding this phenomenon.

A Perilous Relief – Table of Contents


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