TBI Symptom of the Day: Auditory (Hyper) Sensitivity

I’m not sure what’s going on with me, these days, but I have been hearing just about everything around me much more acutely and loudly and with a lot more detail, than I recall in the past. Listening to the radio, I hear all these different aspects of the music that I normally don’t… I hear the individual instruments in the background, all of them in distinct detail… to the point where it doesn’t even sound like a single song, anymore, but a group of instruments each playing their own part.

It’s very trippy. I keep thinking I’m hearing my cell phone go off, but it’s electronic background melodies and harmonies of the songs I’m listening to.

I’ve been hearing my cubicle neighbors really clearly, too, which is fine, except that they’re driving me nuts with their conversations about their trivia calendars. I try to listen to music with headphones on, but somehow their conversations bleed through. I like the people I work with. A lot. And it irritates me that I’m so irritated by them.

I haven’t been much fun, lately.

I’m coming up on my 4-year anniversary of my most recent tbi (I fell down a flight of stairs a few days after Thanksgiving in 2004), and I haven’t been sleeping very well. I try to relax, I try to chill out, I try all sorts of things. But I haven’t been able to really REST, which is a problem.

When I’m tired, everything gets amplified around me. My vision, too. All the colors look brighter. The sounds are louder. The tastes of things I rarely notice are now very noticeable — like the candy bar I was eating the other day — I could taste every major ingredient, and it occurred to me that the chocolate wasn’t the highest quality.

Which is weird. Because I’m not a real candy connoisseur. But I noticed the relative quality of the chocolate.

If I drank, now would be a good time to impress people with my palate for fine wines. But I don’t drink, so I guess that leaves me with candy. Oh, well. The price we have to pay πŸ˜‰

People seem to think I’m depressed. And the other day someone hinted at whether I might be thinking about ending it all. That really bothered me. WTF? Of course not! Just because I’m low, these days, doesn’t mean I’m planning to check out! Don’t get me wrong… the thought has crossed my mind in the past… especially at times when I realized that the net worth of my life insurance policy was greater than my living worth, and I was feeling like I was letting my family down by not being a better provider. But those thoughts pass. Seriously. I’m not a danger to myself. Am I protesting too much? Perhaps, but no, I don’t want to kill myself.

Not when I’m finally figuring out what’s going on with me and I’m getting help! Fer Chrissakes, it’s taken me 40-some years to get to this place, and I’m not about to just check out because I’m feeling low.

Besides, I feel as though I’ve really been divinely spared a lot of terrible things in my life. Things that went badly for me could have gone a whole lot worse, but they didn’t. And I hung in there, and they got better. When all is said and done, that’s really my whole life philosophy/strategy — just hang in there. Things change. They either get better or they get worse, or they go both ways at the same time. But you never know when things are going to go in your favor, so why not stick around and find out what happens…?

It’s not the most sophisticated or complex philosophy, but it works for me.

Now, if only my hearing would change. Seriously, it’s driving me nuts, hearing every little thing. The sound of the keys clicking as I type is not just the usual clicking. I can hear my fingers making contact with the plastic of the keys, I can hear my thumb brushing along the space bar, I can hear the keys depressing and then clicking against the keyboard base… and the wiggling of the keys has a weird clicky plastic sound that’s very “reedy” and faint. But it’s there.

I just heard my furnace kick in, which is good. It’s getting cold, these days, and heat is good. I hear cars driving on the road near my house, whooshing down the hill as they head into the woods… I hear the baseboard heat kicking in… and the distant sound of a radioΒ  playing. And of course there’s the ringing in my ears. Tinnitus they call it. I call it constant.

“Ringing” is the wrong word for it. It’s not ringing. It’s a constant high-pitched whine that has an almost metallic quality to it. Beneath the high-pitched whine — like a huge honkin’ mosquito always hovering beside my ears — there’s another tone… lower, fuller… again, always there. I’ve had this since I was a kid — when I was a teenager, it used to drive me NUTS!!! I couldn’t stand it!!! But oddly, I got used to it.

It’s really never gone. It just varies in intensity. And when I’m tired and my allergies are acting up, it gets way out of control. The weird thing is, it doesn’t keep me from hearing everything else. It’s like it’s in a different “space” that I hear in… always in the background, but never keeping me from hearing every other sound on God’s good earth.

Good grief!

Well, I know I’m tired, and it’s been a long day, and I have a doctor’s appointment in the a.m., when I’m going to discuss some of my concerns with my pcp, who I actually really like. My doc has got a good manner, and I feel comfortable talking things through with them. I need to do a reality check about some things I’ve been noticing… to make sure I’m not in imminent danger. It sounds serious(?) and it might be. But I won’t know, till I check in.

And it’s definitely tbi-related, so I’m actually looking forward, in a way, to getting to the bottom of the mystery.

I’m being cryptic, I know. I’ll write more later, when I know more. Later

Yes, I’m tired. And overtaxed. I really need to chill for the evening. Eat my supper. Go to bed.

Then go to the doctor and get on with my day.

Onward…

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Catching up with myself

It’s been a while since I last posted… there’s been a lot going on with me, actually. I have been seeing a doctor regularly for neuropsychological testing, as well as other physicians like neurologists and my general practitioner, to follow up on other health issues. I have more appointments scheduled to check out some issues that I’ve been having for a long time — and I believe are tbi-related — but I never realized were part of a larger pattern, till the past year or so.

It’s been very frustrating for me, because

  1. I’ve had a lot of trouble identifying the true issues, starting with even realizing that I had them to begin with.
  2. It’s hard for me to talk out loud about things I can conceptualize in the privacy and quiet and safety of my own mind — somehow the words don’t do justice to my thoughts.
  3. Talking with doctors and interacting in that power relationship is very stressful for me, which makes it even harder for me to express myself.
  4. People don’t like to think there’s something wrong with me — they don’t want to believe that someone with my intelligence and insight and humor and kind manner and talent and abilities might actually have something wrong with them. Even doctors get scared by that prospect, I’ve found.
  5. I don’t have medical records of my injuries. I’m one of those tbi survivors who people thought would just get over the falls, the accidents, the blows to my head, when I was a kid. And even when I was in charge of my own health and well-being, I never put two and two together to get myself to the doctor and seek help. Now, my doctors are faced with a lot of unknowns and a lot of guesswork — which they hate! — about what’s going on with me.
  6. I don’t know how to ask for help. My parents and teachers and authority figures when I was growing up never got me help for my problems, I don’t think they ever realized that my injuries might be the cause of my bad behavior (no, I wasn’t just being bad all the time! I wasn’t just bad seed, the “bad apple” in their barrel of kids — I had neurological problems that needed to be addressed!) And since I was raised in an environment that relied on discipline and force to keep me in line, I never was able to see that my issues were due to actual physical injuries, rather than some character defect. I thought it was me that was defective, rather than the processes in my brain. So, I’ve tried like crazy over the years to avoid any sort of detection and avoid drawing attention to my needs and limitations.

But while I can’t do much about most of the points above, I can do something about the last one. I’m actually learning to ask for help! I’m learning to figure out where I’m falling down (using my self-assessment sheet and other check-in approaches), and I’m learning how to express to others what my needs are, getting past the shame and horrible feeling of being so friggin’ deficient.

Yes, I’m learning to ask for help. And I’m learning to talk to doctors. Which is a big change for me. All my life, I’ve avoided them like the plague — in large part because of my communication issues. And because I never wanted anyone to know I was in the level of trouble I was in.

A little progress at a time. It’s slow going. But at least my various doctors and I have all agreed that I do have issues… which is a big step, compared to where I have been in the past, when my issues were not as pronounced, and I frankly didn’t have a clue why I was doing the things I was doing — like being unable to get going with things I needed to do… being unable to follow conversations… being emotionally volatile and tired all the time… I could go on, but I get tired just thinking about it πŸ˜‰ I really need to finish this post…

The view of my back yard has changed…

my back yard

You can buy a copy of this piece at my gallery at Imagekind – click here for prints on paper and canvas

One of the things I’ve noticed, this fall, is how much my relationship with my home has changed. When I first moved into my house in 2002, I was rarin’ to go… really pro-active with everything. I worked at a pretty intense pace, getting the place in order each season. I seeded the lawn, mowed it every other week in the summer, fertilized it, put down lime, mulched the shrubbery, kept things neatly trimmed… I split a lot of firewood and really went hog-wild with cutting up fallen trees and stacking the winter wood supply… I tidied up the flowers and plantings… I fixed things around the house… I constructed different fixtures I needed… I was quite handy and used my carpentry tools regularly. And I used my workshop in the basement a lot. I kept on top of all the repairs that needed to be done, and I called workmen to do work I couldn’t handle.

Since my fall down the stairs in 2004, however, a lot of that has changed. One of my 2-1/2 baths is completely out of commission — falling apart, literally — and I haven’t used it in almost a year. The electrical wiring in my dining room is funky and I’ve stopped using the overhead light. The outside light to the back stairs is not working, and hasn’t been for some time. The trees need to be trimmed and cabled, but I haven’t made the call. I haven’t been keeping up the outside of the house, doing the same level of upkeep. I haven’t been chopping wood. I have even forgotten to cover piles of perfectly good firewood, time and time again, to the point where much of it is unusable now — a total waste. My yard is suffering, the plantings are just running wild, the ticks in the grass are out of control, and frankly I’m lucky to have gotten any leaves up last year, at all.

It’s quite dismaying, when I think about it. It’s just not like me. And I feel that loss of my old self quite keenly.

But there’s a big part of me that just doesn’t care. That part of me looks out at the yard (which isn’t horrible looking, by any stretch, but still needs help) and just notices that it needs help. It doesn’t actually want to do anything about it. I work around the lighting issues in the dining room and the back stairs, using lamps and lanterns instead of the light switches.Β  All the repairs that need to be done just have to wait, as the part of me that’s usually motivated to do something about these things just tries to get through the day.

Truly, even the most basic things — like getting up and out into the day — are so much of a challenge, I just haven’t got the energy to tend to other things. It’s such a challenge to just get to work, do my job, and then come home, that the extra stuff like raking and calling contractors and fixing and patching and hammering and what-not, just tend to fall by the wayside.

But as I’m increasingly aware of these things, I find myself better able to deal with them. Like when I do my self-assessment sheets, and I check in about how I’m really doing… if I’m angry, if I’m anxious, if I’m distracted, if I’m tired, what kind of headache I have today… when I take a look at myself and my life and it sinks in about what I need to do, then I can start taking some action.

I just need to be aware. i just need to watch my energy. I just need to sleep when I need to sleep, and not worry about it. And I need to ask for help, when I need it.

Because I do need help. And there’s no shame in that.

Invisible Me – The interactive dynamics of a doubly-hidden disability.

Hidden disability is an “interesting” phenomenon. On the one hand, a person can have real and serious issues with interacting with the world around them, be it due to a neurological issue or a physical one. But on the other, the rest of the world cannot see what’s going on, and because people tend to be very visual — especially when they first meet someone — and they work off visual clues to figure out how to interact with someone, if they cannot see your difficulties, they may have a hard time:

  1. believing you have something going on with you
  2. figuring out how to interact with you effectively

I have heard of an individual who was legally deaf — couldn’t hear a thing — but had become so adept at reading lips, nobody believed they were deaf when they first met them. And stories abound about people who are autistic or have some learning differences, who are not recognized as having difficulties by the mainstream, and so cannot get the help they need.

Having a brain injury can be about the most extreme form of hidden disability I can think of — and that’s not just because I’ve had ’em. Think about it — the brain is something we ALL take for granted. It’s perhaps(?) THE most important organ in the body, when it comes to regular functioning. Yes, you need properly functioning lungs and heart and other internal organs to stay alive. But the brain is what pulls it all together and keeps us off life-support and a (semi)vegetative state.

Our brain is what makes us human, in my own estimation.

And yet, we know so little about it. I’m dumbfounded by the degree of ignorance that prevails about how our brain works and what it does. We all have one, we all rely on it, we all use it constantly. Yet, how many of us truly understand our own brain? And how many of us are prepared and equipped to explore its inner workings? It just amazes me, that we don’t know more about it, in this age of digital imaging and info gathering. We can collect moon dust and photograph stars and new planets in distant galaxies, but we don’t know how our friggin’ brain works? What’s up with that?!

Anyway, I’ll redirect my outrage, now…Β  Hmmm… what would be a more productive use of my energy? I know — I’ll get back on topic! πŸ˜‰

Anyway, when the brain starts to malfunction — especially after a relatively long time of behaving normally — things can get very difficult, both inside and outside. The rest of the world can’t necessarily see that you’ve got hurdles to cross in your daily life — cognitive issues, physiological issues, emotional issues… And when you slip up, people can be pretty hard on you. If they can see that you’ve got a limp or you’ve lost an arm, they can adjust their interaction with you (tho’ lots of people don’t do a very good job of adjusting in a positive way, and some mean-spirited people just use that as an invitation to be cruel or ignorant). But if they can’t see you’ve got issues, then your interactions with them can become… well, problematic.

Now, let’s add to that mix some of the interior problems that come with having an impaired brain.

Take, for example, the condition called “anosognosia“. This really fascinating condition is literally not knowing that there is something wrong with you. The injured brain doesn’t register that there are difficulties in its experience. It won’t realize that, for example, the left side of the body is not moving, that you’re not taking care of one side of yourself, that you cannot do certain things, that your judgment is impaired… all sorts of things can slip through the cracks of an injured brain that’s “anosognosic” (I think that’s how you’d describe it). It’s a pretty common, but not very well-understood condition that some people are studying and have written about. One of the folks I’m a real fan of is George Prigatano, M.D., who (I believe) works out of the Barrow Neurological Institute in Arizona. He’s written a fair amount about anosognosia, and I really like his style. He also seems like a decent fellow — from his photo and his writing style. (Then again, as with most things, I could be wrong — my brain could be playing tricks on me)

So, when your own disability is hidden even from you, it can make things really interesting… frustrating… confounding… infuriating… confusing… amusing… hazardous… adventurous… you name it. With brain injuries, everybody in the mix can be at a loss about what’s going on with you, and how best to handle things.

I’m thinking in particular about many conversations I’ve had with people over the course of my life that went very badly due to my penchant for confabulation. Confabulation is when you get the details of a story wrong, when you think you’re getting it right. You think you’re being 100% accurate, but you’re actually missing important details, getting them turned around, or whatever. I would be talking to someone and I would get the facts and figures turned around — like times I was at a place… or things I did… or people I saw… or the progression of events. I would get so turned around, without even knowing it, and by the end of the conversation, I sounded like I was either a pathological liar, a fabulist, or I was trying to impress them with bogus information.

All I wanted to do, was relate an interesting story or tidbit, and I ended up looking like an idiot.

Now, until about a year ago, I had no clue that the head traumas I’ve experienced over the course of my life had affected me the way they had. I didn’t realize A) that I had issues, and B) why that could be. I figured I just wasn’t trying hard enough to think things through, and I really beat myself up over this stuff a lot. No one else realized that I sustained multiple tbi’s, either — it wasn’t something I talked about, and it wasn’t something I thought was worth mentioning. And no one around me seemed to realize that my confabulation issues were possibly neurological, and not character-flaw-based.

So everyone in the mix — myself and others — went around with the belief that I had trouble telling the truth at times. And that’s a hard thing to bear. Especially when you don’t mean to mis-speak.

Yes, the doubly-hidden disability of brain injury can complicate things in so many logistical ways, when it comes to interacting with a world that cannot see the problems you’re having… and you yourself cannot tell what the problem is (if you can even tell there is a problem).

In my case, my problems are often not obvious to everyone around me. I they “seem fine” but I’m not processing information as fast as everyone around me. I tend to think visually, using pictures and “little movies” of past experiences to understand what’s going on around me. And that visual processing — while it’s more in-depth and full-spectrum than purely verbal thinking for me — takes longer than just thinking in worlds. Or I might be having trouble with sensory processing — when I’m not able to tolerate the lights/sounds/smells or other stimuli that everyone else is fine with, and I can experience a lot of distress that others cannot relate to because they just don’t have that experience. If you have light sensitivity or you’ve got high tactile defensiveness, you know what I’m talking about. If you seize when you hear certain sounds or smell certain things, you now what I’m talking about. But most of the neurotypical world, which isn’t subject to such disruptive experiences, may not be able to fully grasp what it’s like, which makes it hard to figure out how to relate to someone like me.

But how does it look?

I’ve been thinking hard about how to express the dynamics that take place between a person with hidden disabilities interacts with the ‘normal’ world. A picture’s worth lots and lots of words, so I’ll try to illustrate. Using my own experience as a guideline, here’s how I conceptualize my own situation:
invisible me - I'm on my own

I’ve got all these different internal parts of me that are unique to me and that take up space in me. They aren’t ALL there is to me, but they are significant parts. Things like mood volatility (lability). Things like slowed mental processing speed. Things like non-verbal social communication preference and difficulty decoding auditory input. Things like not being able to take a lot of noise and light. Things like needing to rest more than most people I know. They’re not bad things, per se. They just are. But they do make up a substantial part of me.

Now…

Enter the world…

invisible me - the rest of the world shows up

People around me have a different “color” to them, a different “shape” to their lives. They seem different to me, and while I recognize them and relate to them as other forms in the world, they are definitely different than me. Of course, everyone outside of me, being “shaded” they way they are, with their own “hues” of perception, have plenty in common with others, but they don’t always realize that I’m not like them.

And so they tend to encroach on me…

invisible me - the rest of the world encroaches on me

I don’t think they necessarily mean to encroach on me and impose their own specific sensibilities on me, but that’s what they do. I think that’s what most regular people do with everyone they meet. People need to feel included. They need to feel like they’re part of something. They need to feel a connection with others. There’s nothing wrong with that — it’s one of the things that makes us human, and it’s good. But a lot of times, in their intention to include others in their circles, they jump to conclusions about how other people are — how they should be — how they can be. How I should/can be.

They make a lot of assumptions about who I am and what matters to me, and what I want to do with my time and my attention. They tend to impose their views on me, thinking that I’m just like everyone else. What they don’t see, is that the shapes that make up my inner life are not shaded like theirs with the same hues. I am a “different color” than them, but because I don’t have the same hue as they, my own personal “flavor” of personality is invisible. And they don’t realize I’m not like them at all.

But I do.

And sometimes I need to “take my space” and carve out a piece of the world that is mine, all mine.

invisible me - I carve out my space and say what isn't me

I am often so busy trying to decode the sensations and stimuli and hidden clues of the world around me, that things like politics and economics and gossip and star-studded newscasts are either too much for me to take, or they’re so extraneous and irrelevant to my daily functioning, that they’re an annoyance at best and a draining distraction at worst.

I just have to block it all out, to remember who I am, and keep on top of my processing and functional difficulties… to just maintain a daily way of life without becoming completely exhausted and depleted, and then screw up my life all over again.

So, sometimes, I have to just come right out and tell people, “I don’t understand a word you’re saying.”

Or… “I would like to join you for drinks after work, but I’m exhausted. Yes, I know it’s only Thursday, but I’m really beat.”

Or… “I know you’re really excited about seeing that movie on opening night, but I can’t take being in a crowd of people waiting in line for tickets… and then being in a closed dark space with lots of different smells and sounds for hours on end.”

Or… “I have absolutely no interest in what you’re discussing. I really don’t care about American Idol, I really don’t care who gets voted off the island, I really don’t care about someone’s clothes, I really don’t care about their hair. I don’t care who is best-dressed and who is worst-dressed.”

Of course, this doesn’t always sit well with the rest of the world.

Sometimes people react with surprise. Sometimes they react with offense. Sometimes they’re amused and have to admit they secretly agree with me. But whatever their reaction, I can tell that it sets me apart from them.

invisible me - the rest of the world gets pissed off at me

Regular people who aren’t dealing with disability, I’ve found, sometimes really dislike being told that their pet peeves and attachments are not essential to me.

They may feel invalidated, and they don’t like being invalidated.

They don’t like being excluded from the world of others — from my world. They want to interact with me, but I just can’t…

They don’t like feeling dismissed, and sometimes when I brush them off they seem to feel that way. They don’t realize that I just don’t have the bandwidth to be interacting with them the way they need me to.

And some especially insecure folks really dislike having it brought to their attention that they are not necessarily in the right all the time, and some people have other things to think about, than all the stuff we’re fed on a regular basis through the news and media.

So, people tend to get mad at me. They get upset that I’m not validating their fears and insecurities. They get upset that I’m not participating in their conversations. They get tweaked that I’ve got other things to think about than American Idol and Survivor and the Atkins Diet. They can’t see why I don’t compliment their car or their clothes or their job title.

It’s not that I don’t want to — well, sometimes I don’t — it’s that I am trying to keep myself stable in a world that constantly bombards me with all sorts of stimuli that I have a really hard time managing. People look at me and think, “They’re so together… they’re so mellow and calm and intelligent and thoughtful… ” And they interact with me as though I had everything together, because they cannot see the frayed wiring in my brain, they cannot detect the subtle clues that I’m having trouble with my sensory input, they cannot see the intense pain that simple contact with my clothing causes me. They cannot see the pain in my head that never, ever goes away.

They have no way of knowing what difficulties I’m having, and if they did, it would probably freak them out. If people knew half of what my daily experience is like, I suspect they would weep. I’ve done my share of weeping, but it’s not the most productive use of my time. I have a life to live.

And so I capitulate.

For the sake of navigating the seas of social interaction, I pretend to care about the details of their lives. I pretend to care about their hobbies, their travels, their children, their houses, their pets. I pretend to care about the stock market. I pretend to care about the election. I feign interest in their lives. I mirror their statement with carefully re-phrased repetitions of what they say to me.

invisible me - what happens when I cave to the pressure

It’s actually quite easy to do — all you have to do, when someone says something to you, is repeat it back to them in a different words, with a “punch” of positive emotion that validates them and makes them think you’re on the same wavelength as them.

Case in point:

Guy on the street says, “Hey – did you see the game the other night?”

I say, “No, but I heard about it.” (which is true, because he just mentioned it)

Guy on the street says, “The team is doing great this year!”

I say, “You bet! They’re kickin’ ass!”

Guy on the street says, “We’re going all the way! Can you feel it?!”

I say, “Go Pats!!/Go Lions!!/Go Bears!!” or “Go ________ (whatever team) is local!!!” and I give it a real punch, to make him think I’m totally on board.

Guy on the street goes his own way, feeling like he’s just had a personal exchange with another fan, and I go my own way, having had a successful interaction with someone who needed to connect with someone.

I don’t do it to deceive people. I do it to let them feel like they’re participating in my life. In some cases — especially if the interaction feels a little edgy or dangerous — I do it to assuage them, to pacify them, to make them think I agree with them, when to disagree might result in an argument — an argument that I cannot and will not win, and which may get me in trouble.

It’s not 100% socially accurate, but it works. They’re happy, I’m off the hook.

But in a more in-depth relationship, in my closer friendships and intimate connections, following this strategy compromises the parts of me that are true to me. It’s one thing, to have a casual conversation with people on the street whom I’ll never see again. But in my real life, in my deeper life, in my genuine life, this strategy just works against me, and I lose out.

When I “act the part” that other people expect of me, the parts of me that need special attention, the parts of me that are different and unusual and full of nuance, can get blurred and full of noise. And the parts of others that I try to emulate, as I’m pretending they’re part of me, are just blurred and full of noise

Ultimately, in the end, who is truly served by my attempts at simulating normalcy? In the outside world, it may serve to keep me safe and buffered from the dangers that come from being radically different and deeply defenseless. But in my real life, the up-close-and-personal sides of me, all that is achieved is that the folks around me who cannot — will not — recognize my differences, are placated and appeased and made to feel a little less uncomfortable around me, while I am left at an internal disadvantage in the world.

What I’d really like most is this:

invisible me - what I would like most

That is, for people to recognize there are radical differences within me that prevent me from being just like everyone else… and for people to realize that every “normal” person has within them some aspects that are similar to me, that make them different from the norm. My differences do not make me a threat to others. My different information processing speeds and methodologies pose no danger to others — if anything, they actually help. And my sensory issues, while they are at times problematic and can exclude me from living a full life, heighten my abilities to detect certain details that just fly by others. My on-again-off-again coordination issues may disqualify me from professional sports, and they may cause me to knock lots of things off counters and break things I just try to pick up, but there are also lessons to be learned from slowing down and not flying around at a break-neck pace.

Ultimately, in addition to my accommodating the rest of the world by adapting myself (however superficially) to it, I would also like the “permission” and ability to carve out a space for myself in the world that is truly genuine and authentic to who and what I really am — a mild traumatic brain injury survivor whose experience is atypical and whose abilities vary from the norm. I want the right to express myself and my talents and my abilities in a way that is true to me and my essential nature. And I’d like others to find within themselves the parts of them that are not “normal” — and come to accept and integrate them as a regular part of human experience.

We all have differences, we are all varied creatures on this good earth. We all have our secrets and our hidden abilities and disabilities. My deepest hope is that we may someday create a world where all of us are able to participate in ways that make the most of our abilities and shield us from the pressures to compromise our safety and overstep our common-sense boundaries, in order to appease others or fit in with a world that cannot accept our warts along with our beauty marks.

I want a world without narrow-minded judgment… a world that has the good sense to find the best in each of us and bring that out, while forgiving us for our limitations. I want a world that cares more about its own survival, than keeping up appearances. I want something real. And I want something dignified. For all of us.

Call me crazy, but I don’t think it’s too much to ask.

How I figured out something was REALLY wrong

Yes, I picture’s worth a thousand words… Here’s a graph of what happened to my financial situation, after my fall down the stairs (I hit the back of my head on the top 3-4 stairs) in 2004:

The interesting thing about this is that I never fully realized that there was something really really wrong with me, till I looked at my finances in 2007. Prior to that, I had thought that the problems I was having with my moods, my temper, my attention, my sleeping patterns, my pain… welll, everything… were due to things outside myself.

I literally thought that it was other people who had the problem. Or, it was just job stress. Or it was an unhappy childhood. Or I didn’t realize there was something wrong at all.

But then, in 2007, I looked at my finances and I realized that something was very, very wrong. I, who had been in the financial services industry for a decade or so, who was studying to become a financial advisor, who had been all about money for years and years and years… who knew about all sorts of common sense investment and savings vehicles… I had literally forgotten to keep track of my finances. And I had forgotten to stash a large lump sum I’d received in a secure interest-bearing savings account.

People, that’s just common sense. It’s the bare minimum you do with a lump sum of money, let alone all the other things you can do with it.

But I hadn’t. Even knowing what I knew, even having the positive orientation that I had to money, even having all this domain experience in savings and investments… something had broken down. And it forced me to take a long, hard look at all the other factors that had been plaguing me in my life.

Suddenly, a pattern emerged. And I started to remember things i hadn’t thought about in years…

TBI Issues Tracking – How I Keep It All Together

For the past year, I’ve been working regularly at figuring out how to effectively identify and manage my TBI-related issues, both from the past and the present. I was keeping a journal on a regular basis, which was helpful, but there was something missing. I needed another tool to help me keep track of what was going on with me — in an objective and fairly brief way.

In my search for information, I paid a visit to http://www.headinjury.com and found their Journal of Daily Experiences. It was just what I needed! I printed out a copy and started using it, tracking my daily experiences and realizing that there was actually more going on with me than I had believed. Only when I really asked myself honestly if there were certain things going on with me — like irritability and anxiety — was I able to identify and address issues that had dogged me for decades, but I’d never been able to either identify or cope with in a constructive fashion.

I used the form from the website, but I eventually found it was too long for me to make sense of, and it was hard for me to get my head around finding each issue that was giving me problems. I needed something more organized — and something that gave me more space to write in. I had a lot to write, and I was having trouble fitting my words into the space there.

So, I copied and pasted the table on the web page into a word processing document, reorganized it with categories, and I changed the wording a little bit. Since it was in electronic format, I had plenty of room to type in my information. I didn’t run out of room.

I also wanted a version that I could print out and write on. Writing by hand is an important part of my regular recovery (it forces your brain to work the hand-eye coordination parts, as I understand it), and while typing into the word document was easier, sometimes I really needed to write the stuff down. Sometimes I needed to record things without a computer.

So, I created a PDF version — with a nice picture of a head with a brain on it, so I could keep track of my headaches, which are pretty much constant.

I have used my form(s) to record information both about my childhood (to see what problems I had) as well as recording information about my daily life. Both approaches help me a great deal in understanding my situation and formulating approaches. And I have written records of what works (and doesn’t work) for me in my daily life. Tracking my childhood experiences really helped me deal with the emotional baggage of what was a very challenging upbringing, and it helped me put a lot of my “badness” in a context I could understand objectively, without constantly blaming myself for my temper, my outbursts, my perpetual flipping out and beating up on my little brother. There was more going on with me and my head, than anyone knew. And I’ve paid a huge price, my entire life, thinking that my very nature was “bad” or “sinful” or “flawed” or “lazy” or “evil” … when so much of my behavior and performance problems read like classic TBI after-effects… and can be directly traced to them.

I wasn’t a bad seed.

I was injured.

And I never go the help I needed.

That doesn’t change the harm I’ve done over the course of my 43 years, but it does allow me to identify some of the true cause(s) of my problematic behavior and either take steps to make amends, explain myself to the ones I’ve hurt, take steps to make sure I don’t do those childhood things in my adulthood, and/or better understand what was really my fault, and what was TBI-related.

I also currently use the form(s) for day-to-day self-assessment. It may sound simplistic, but just recording my experiences on a regular basis has made a huge difference in managing my symptoms and issues. If I don’t self-assess at least once a week, I actually start to feel like I’m losing my mind… I feel like there’s something wrong with me. I feel defective. I feel useless. I feel like a total friggin’ loser. I don’t always fill out every single piece of the form, but I at least hit the high points, and that helps.

When I look at my issues in light of the tbi’s I’ve sustained, and I see that these symptoms are originating from an injury — not a character defect — it takes a lot of the pressure off. Self-assessing and tracking my issues reminds me that it’s not me that’s compromised (tho’ I must admit I have plenty of flaws that have nothing to do with tbi πŸ˜‰ — it’s my injured brain that’s the root of a lot of my issues. And since I know the source of the problems, I can get outside myself and take steps to address the issues I come across.

And that makes all the difference.

I’ve uploaded the two files below for your use. I hope they help you as much as they help me!

Daily Experiences Journal (Wide) – Word Document

Daily Experiences Journal – PDF for printing and filling in by hand

Basic Facts about Traumatic Brain Injury – Video from www.brainandspinalcord.org

I came across this today and really enjoyed it. It’s short, concise, and to the point.

http://www.brainandspinalcord.org/media-center/FactsAboutTBI.html

I tried embedding the video in this blog, but the code the site generated wouldn’t “take”. So, pay a visit to the site yourself and take a look. There are other videos too that I found helpful.

Checking my stats from the past few days…

One of the things I really like about WP vs. Blogger is — I get better ideas about how people are finding me here.

I’ve been looking at how people find this blog, and I’ve found the following searches recorded by WordPress:

  • polytrauma
  • i’m a tbi survivor
  • interview doesnt go well
  • caffeine and mild traumatic brain injury
  • “losing track of conversations”
  • anxiousness lack of appetite trouble fal(ling asleep?)
  • losing one’s mind in injury to the brain
  • tbi ptsd
  • how do you know that interview did not g(o well?)
  • mtbi blog

Apparently folks are looking for information about jobs and brain injury and ptsd, which is right up my alley, since all three of these are very interesting, important and pertinent to me.

About PTSD, I have to say that just living each day as a TBI survivor (even a mild one) can be traumatic in and of itself. We live in a culture that doesn’t understand the issues, even though it’s impacted daily (and in very violent and extreme and negative ways) by TBI’s of all kinds. Tons of people have car accidents, experience whiplash, get knocked in the head. Lots of kids hit their heads during sports matches and are never treated. Battering and domestic abuse causes brain injury, as well, not to mention fights and brawls and drug/alcohol related incidents. And then we have the falls… don’t get me started.

That being said, dealing with a world that is impacted by TBI can introduce all sorts of trauma — from dealing with folks who have had injuries themselves, but don’t realize it, to dealing with people who have been victimized by TBI survivors and are “triggered” by your demeanor and/or actions. Also, when you’re living with a hidden disability, there’s the danger of over-extending yourself without realizing it. We live in a very go-go-go culture that’s not big on getting enough rest and eating right, so when we’re fatigued, we TBI folks can make poor decisions and do things we really shouldn’t – like driving too fast or too slow… like taking risks we normally wouldn’t. And that can lead to yet mor injury, in my experience.

TBI is much more common that most people realize, but because it has to do with the brain, most folks are just plain afraid to approach the subject. But knowledge is power, people. And what we know can really help.

It can also really help therapists or folks who are treating ptsd — there’s not nearly enough experience and education with regard to tbi in therapeutic circles, in my opinion. I think there may be a reluctance to factor in neurological issues, when doing psychotherapy, which is understandable, as neurology is a somewhat esoteric field — especially for LICSW’s and MSW’s and other sorts of counselors who don’t have medical backgrounds. But it’s really, really important to realize that tbi can — and often does — play a part in certain issues. So that the real problems can be addressed, instead of trying to track down the emotional root of some issue that’s actually neurological/physiological in nature. I cannot stress this enough. I could write a whole book on this important issue… and maybe someday I will.

With regard to coffee and tbi — I was being evaluated by a neuropsychologist a while back, and when he found out I’d had some coffee, he cut the session short and told me the results wouldn’t be accurate. So, measuring the performance of the brain on caffeine is not accurate, apparently, which tells me that caffeine may cause the brain to function artificially well. Or it can skew the performance in some way. That tells me that while coffee may be useful to me as a short-term solution to fatigue, ultimately, it may cause me to have “false” confidence… and possibly lead to more poor decision-making.

losing one’s mind in injury to the brain… Yes, sometimes it feels like it can happen. But learning about tbi and recognizing what’s “just your brain playing tricks on you” can go a long way towards easing the stress. I have found that the first step towards dealing well with my strengths is recognizing my weaknesses and learning not to step into those holes. It’s like walking down a dark, rocky, washed-out path over and over again… until you realize where the rocks and holes and roots and gulleys are, you’re going to keep stepping in them. Best to find out where they are, so you can walk around them and stop injuring yourself. You don’t have to be down on yourself about it, you don’t have to beat yourself up about it. Just learn where you’re less than perfect, and work with that.

You can’t fix something, if you don’t know it’s broken. And there are ways to fix — or at least address — some of the issues that come along with tbi.

As for interview stuff… Well, time generally tells if the interview didn’t go well.

Stay strong, everyone.

BB

The Computed World : The most massive exercise in inclusiveness in the history of the human race?

I’ve been thinking a lot, lately, about how much the web has changed my life. And the lives of others.

It’s integrated me — an esoteric iconoclast with a long history of injuries and interpersonal issues — into the mainstream in ways that I never before dreamed possible.

This is nothing short of a miracle. When I was growing up, I had such intense problems with other people and completing basic tasks, that I was often ejected from the midst of “regular people” (like after my head injury at age 8, when I was removed from my gifted students class because I was both unable to keep my attention on the subjects we were studying, and I was also becoming an increasingly disruptive influence on the class). The problems didn’t diminish as I grew older, either. If anything, they intensified, with considerable social consequence.

As I grew up (I won’t say “matured” πŸ˜‰ I found myself so often at odds with everything around me, that I became increasingly marginalized, to the point where I could not hold a regular job and I could not perform the duties of the jobs I did have with any reliable regularity. But when I got into the world of computers, I found I was actually able to keep my attention on my work and perform valuable duties that earned me good money. The world wide web, in particular, made me more of a wage-earner than I ever thought I’d be. It’s made it possible for me to purchase a reliable car, to buy a house, to keep my pets healthy with proper veterinary care, to support valuable cultural initiatives that otherwise would not be able to exist, to have clothes that grant me entrance to the land of civilized people.

For someone who was for a long time socially marginal (as in, extremely and vehemently “alternative” to the point of being borderline feral), the influx of not only adequate money to pay grown-up bills, but also of work opportunities that not only challenged me but rewarded me with social acceptance and recognition, has had nothing short of a dramatic transformative effect. I would not be the person I am in the world, today, if it were not for the world wide web. You would not be reading this (obviously) if it weren’t for the web — and I would probably never have been able to write it.

On the personal side, the web made it possible for me to learn and study and research a wide variety of subjects, where before I was limited by the time I had to get to the library, not to mention which libraries I could get into. It’s also put me in touch with cutting-edge research that would normally only be available to professionals and people privy to the inner sanctum. Basically, it’s put me on somewhat similar footing (at least in terms of access) to information that used to only be far out of reach.

Email, too, has made it possible for me to communicate with other people in ways that eluded me for years. I remember the day it dawned on me that I could actually communicate with my parents now, because they had email (at last, after I’d been nagging them to get it for a few years). I not only had a window of time in which to pause and reflect on how to respond to them, but I also had their words in print, so when my mother came back and said “I never said that!” (as she is wont to do), I could counter with “Yes, you did!” and produce written proof. I avoided any contact with my parents for a number of years, because of communication problems. But having email solved some of the most significant issues that stood between me talking with them as regular human beings. This is also quite amazing, considering the level of estrangement between my folks and me, 20 years ago.

Forums and blogs have enabled me to have conversations with others that are paced as I like them — with plenty of time to step away and consider my response before I type and send it (which is important, because I’m known to unintentionally flame people, or just get all worked up over things and let fly at the drop of a hat). And while I did screw up a lot of my initial encounters, I could just drop out of the thread, beat a hasty retreat, and think about how I was going to re-enter the conversation — or if it was better that I just left well enough alone.

Going online lets me participate with other people without worrying about what I look like, what I sound like, if I speak too fast or too slow, if I fidget and twitch, if I forget what I was going to say, if I get confused by someone’s demeanor, if I get intimidated by my surroundings or crash and burn in sensory overload. It lets me speak my mind as a real person, not the person someone else imagines I am. It lets me measure my words and make sure I’m saying exactly what I meant to say, not get turned around on the spot and then either teased or mocked or dismissed as a result.

The online world lets me be fully human without the tbi-induced dangers of in-person interaction.

Yes, the web has changed my life. And for the better, in oh so many ways.

As they say over at A List Apart:

“Possibly the most important invention of the past century, the web is undeniably one of the most robust engines of knowledge transfer, political and social change, artistic endeavor, and economic growth the world has seen.

Remove the web, and billions in trade disappear. Websites enable people who can’t walk to run to the store. They bring knowledge and freedom of thought to places where such things are scarce; make every person with a connection a citizen of the world; and allow every citizen to be heard.”

Computers, in general, have made a huge difference in my life. I must admit that before I started working with computers, I was pretty limited. I was restricted to being a typist or secretary. I was limited to doing work that did not suit me, that was highly social in nature (because the non-social jobs went to people with college degrees, and I was unable — for a number of reasons — to ever complete my college degree). Computers made it possible for me to learn as I learned best — hands-on and at my own pace, which is different from others’ paces. I tend to go much faster or much slower than others. In many ways, I am unteachable in the traditional sense. A standard classroom environment just doesn’t work with me. My pacing is just not like other people’s, and I suffered for it for many years in the pre-computer job market.

But from the first time I sat down in front of a computer to learn something new — WordStar for DOS at my temp agency in 1987 — I’ve taken to it — that format, that forum — like a fish that’s been out of water for far too long. At last, I had a way to not only work, but also LEARN, and increase my skills — and employability and my earnability — far beyond anything that I had ever imagined.

After a lifetime of being told that there was something wrong with me because I wasn’t like other people, because I didn’t learn like other people, because I didn’t process information like other people… at last, here was a way for me to not only show that I wasn’t worse because of my differences, but I was actually a whole lot BETTER than anyone had ever dreamed I was. At last I wasn’t going to waste anymore.

At last, I had the right environment to work in. At last, I had the right kind of support in doing my work — a silent box humming away in front of me, not telling me I was an idiot, I was lazy, I was stupid, I was a loser. It just told me “Yes” or “No” or “Try again” — without making me feel stupid in the process. At last, I hadΒ  the right venues and avenues to use my skills and talents and inclinations.

With the massive assistive technology that the computed world is — with the desktops, laptops, email, world wide web, forums, websites, blogs, instant messaging, and more — it’s more than possible for me to excel at what I do best — logically process information and come up with solutions to tricky problems that stump other people. It’s more than possible. It’s now probable. And I can earn a living at it and build a life on that foundation.

And while part of me thinks I wouldn’t mind it at all, if I never put my hands on another keyboard, and part of me would like to find work that offers me more exercise and flexibility and less immobile staring at a screen all day, I know deep in my heart that my life — and the lives of all the people I interact with each day, the people I love, the people I support, the people I work with — just wouldn’t be the same without computers and the online world.

I need the assistance.

I need the connection.

I need to be as fully human as I can be, and use all my skills and talents to their fullest.

If that means I do it through keystrokes and wires, then so be it.

There is no shame in asking for help

I was watching an old episode of “Northern Exposure” last night — remember that? the show about the New York doctor who has to work off his tuition in the wilds of Alaska? I watched it religiously when it was on, in the early 1990s, and thankfully it’s now available on DVD through my local library. (Have I mentioned yet, today, how much I love my library — indeed, the whole system they belong to, which lets me request books from all over, even colleges that would normally be off-limits to me?)

Anyway, the show was about knowing how to ask for help. Swallowing your pride and accepting the help that others offer. It was a great episode, I believe from the fifth season. A bunch of people in town were in situations where they needed a little (or a lot) outside help, and they were eventually able to see past their own pride to either ask for or accept assistance from others.

Having a brain injury (even a “mild” one) that leaves traces of impairment can be devastating, in and of itself. All of a sudden, things don’t work the way they really should (I’m not going to pretend that I think my memory issues and emotional volatility and mood problems and cognitive issues are absolutely okay — they’re really problematic, at times, and a lot of the time, my life would very likely be a lot less complicated, if I had all the functionality available to me, had I not been hit on the head so many times). All of a sudden, the world gets turned upside-down, and very little seems to work like it once did. It can really lay a person low, losing faculties and abilities that you used to once take for granted. And it can really do a job on you, when your difficulties are not immediately apparent to others, but you’re dealing with them, all the same.

Things like slower cognitive processing — figuring out what someone just said to you and how you should respond… constant crazy-making ringing in your ears… wild mood swings and sudden temper outbursts… sleep disturbances… the whole raft of issues and challenges that can accompany mTBI, may be well-hidden from the outside world, but that doesn’t make them any less real or any less difficult to deal with.

Things get even more complicated by the fact that it’s your brain that’s been affected. It makes it harder to figure out just WHAT is going wrong, and how, and when, and what you’d like to do/see/feel/experience instead of what’s going on inside and around you. It can make it harder to even see that there IS something wrong, and you can spend a lot of time (like I did, for several years after my last fall) walking through the world in a kind of daze, wondering what they hell is wrong with you and why you’re having so many problems with such simple things.

That’s where help from other people comes in. That’s where assistance offered from others really comes in handy. I’ve had years and years of experience dealing with my head injuries, and much of that time has been spent trying to go it alone and do things myself. I’ll do it myself! was my battle cry for most of my life, especially during childhood. It was so hard for me to figure out what was going wrong, what the cause was, and what should be done about things, that conceptualizing it in a way I could explain to others — and then effectively communicating it to others — was an almost insurmountable task. So, I ended up taking on a lot by myself, and I really muddled through my life, one day after another… for decades.

But when I finally started to put two and two together, and I realized that many, many of my difficulties could be traced back to my head injuries — my behavior and my life experience changed dramatically either immediately after the injuries, or they went downhill very precipitously within months — it became all the more clear to me that I did need help. That I had limitations. That there are parts of me that don’t function the way I want/need them to. And that I couldn’t go it alone anymore.

So, I started asking for help. In small ways, then building up to larger and larger ones. I have to admit, I still have a lot of trouble at times asking for help, in part because of my pride, in part because I sometimes have a really difficult time knowing whom to ask and what to ask for. But I am learning that if someone offers me help, it’s often best to accept. And not only for my sake — for the sake of others, as well.

Asking for and accepting help isn’t just for you. It’s not just for me. It’s not just for the benefit of the person who needs assistance. It’s for the person who wants to help, too. It’s for the person who sees another human being in need, and wants to reach out and lighten their burden. It’s for the person who longs to make a valuable contribution to life, who longs to pitch in, who longs to be of use. I’m one such person — I love to help other people, and I love to contribute to their well-being. It’s been that way all my life, and I’ve actually gotten in trouble for being “too helpful”.

Helping others is a need I have. It’s a need I feel compelled to fill. And I know for a fact that others share that same need. We want to be valued. We want to be included. We want to be part of the solution and help overcome others’ problems. We want to pitch in. We want to be part of something bigger than ourselves. We want to be the best people we can be, by helping others to do the same.

So, accepting help from others doesn’t just help me — it helps them, too. It includes them in my life. It makes them part of something good. We all need that.

So, the next time someone offers you help, whether you’ve had a TBI or not, please accept their offer (within reason of course). The next time you’re struggling, and someone offers to help you out, let them. Let them carry something for you. Let them help you complete something you started. Let them come to your assistance. Let them hold the door open for you. Let them be of use to another human being. When you accept help from another person, you don’t make yourself weaker. You make yourself stronger.

And that’s how it should be.

A brilliant opportunity

I woke up today thinking that the TBI survivor community has a great opportunity before it — with the power of the internet and new electronic publishing technologies like blogs and forums and emerging print-on-demand technologies, we really do have the ability to offer each other the support that we cannot (and probably will not) find from the “system” that’s supposed to help us.

The medical industry doesn’t seem to have much interest in helping us address our issues in a consistent and substantive way.

All that some can manage to tell us is, “Every TBI is different,” without mentioning the myriad similarities so many of us have — and can benefit from hearing/learning about.

And frankly, there’s not a lot of money in rehabilitating someone who is no longer “able” to function at the same level they were before…

So many of us just get sent out to pasture. We fall between the cracks. And people who are in public positions to change that, don’t seem to care. I’m sure, on some level, they do, but so much is not known about this condition, and so many other conditions are more obvious and more easily tracked and more easily conceptualized… and are less frightening to the average person, that TBI just isn’t on the radar the way, say, cancer and heart disease are.

Now, I lost one of my little sisters to breast cancer, 2-1/2 years ago. I sat at her side and held her hand during her last hours of dying, so I’m certainly not opposed to cancer getting as much attention and funding as possible. And people close to me have had heart issues, so I’m all for addressing that, as well.

But doesn’t anyone have any attention to spare for TBI folks?

Perhaps not — but we do. We, the survivors. We, the family and friends. We, the ones with the most to lose and the most to gain. We can — and should — be there for each other and pool our resources and experience and strength and hope, for the benefit of everyone concerned.

Ultimately, the very society which doesn’t have much time for us, will ultimately benefit. But that’s not something I can prove right now, and it’s not something I can substantiate with numbers and metrics, so society at large will just have to wait and see how well we can rebound… and how well we can serve one another in the best way humanly possible.

An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!