Temper, temper…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

They might work for you, too.

Good luck!

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TBI Symptom of the Day – Such trouble sleeping!

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

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

It’s just not good.

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m not sure. But it does.

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

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


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Reverse-engineering my “depression”

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

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

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

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

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

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

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

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

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

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

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

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

Symptoms include:

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

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

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

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

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

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

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

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

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

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

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

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

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


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 😉

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 radio  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…

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 😉 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.  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…  Hmmm… what would be a more productive use of my energy? I know — I’ll get back on topic! 😉

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 😉 — 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