Straight to execution…

Way back when, at one of my first technology jobs, my boss (the company owner) chided me for “jumping straight to execution.” He wanted me to spend more time researching a new program — learning to use more of its features in a lot of different ways — before I started using it.

It rankled me, that he was trying to “hold me back” and not give me my head, so I could just jump right in. But now, when I look back, I realize that this has been an ongoing pattern with me — and it appears to be directly linked to my TBI after-effects.

I do tend to jump right into things without thinking them through completely, up front. It’s a huge drawback, and seems to stem from my diminished self-assessment abilities, which don’t tell me enough about my limitations… not to mention a lack of impulse control.

It really upset me, when he told me I should be forging right ahead with things… But now that I think about it, that was a really important piece of information for me to have. And I’m grateful to him for passing it along to me, so I can benefit from it.

TBI self-assessment challenges are a biggie

Imagine, if you will, you’ve got serious issues in your life with job responsibilities, personal interactions, private relationships, and generally getting by in life. But your problems start at the very place you depend on, to understand your situation — your brain. In particular, the parts of your brain that are in charge of logical thinking, monitoring your behaviors, interpreting external stimuli, and controlling your impulses and reactions to the world around you…

Welcome to the world of the TBI survivor.

It’s a troubling and problematic issue, this post-TBI condition. I mean, how much more convoluted can you get? The very part of you that you depend on, to determine how well/ill you are, is more compromised than it can imagine. And the people around you may not even realize it, so trying to explain your situation to people who don’t “get” your altered cognitive state can even reinforce the mis-conception that there’s nothing wrong with you… It can be very frustrating and crazy-making.

And it’s pretty much where I am, these days.

I’m telling people close to me about my TBI, one at a time. But they have to be very close. And I need to feel safe telling them. It’s a tough one, especially considering that they don’t have a lot of information or experience with TBI, and it scares the be-jesus out of them to think that I’m not the person they thought I was, all those years.

Well, I wasn’t the person I thought I was, all those years, either! 😉

I’ve had two different kinds of reactions:

  1. Disbelief — I can’t believe it! You don’t seem brain-damaged!
  2. Denial – That can’t be! You can’t be brain-damaged!

It’s because they love me, I know. They hate the idea that I’ve sustained an injury of that scope. And the fact that it has to do with my brain — it absolutely freaks people out, when they think about something going wrong with your brain — such a new frontier, such an integral part of our lives, such a mystery, and the prospect of something going wrong with this mysterious and essential part of ourselves is so terrifying for most people, they cannot possibly respond in a constructive manner.

They just have too much fear. And ignorance. And they cannot deal very well with the idea that there’s something really wrong with how my brain works.

In the face of their incredulity and ignorance, I withdraw. I don’t do well with people telling me that what’s going on inside my already struggling head just isn’t the case. I know people are trying to protect me (and themselves) from a “terrible” fate, but being told that what’s taken me 35 years to figure out, is just plain wrong, is not helpful.

So, I turn my attention to what’s going on inside my own head – to the best of my ability, that is. I pull myself away from those folks and do what I do best — look to my own resources and go online to research self-assessment and self-awareness in TBI survivors. What I can’t find in person, I can find online.

I really need to pinpoint the issues I face in a productive and constructive way. So, I’ve been reading about self-assessment in brain-injured individuals, trying to figure out ways to be adapt to this condition and live my life to the fullest. I can’t be held back by this state of mind. I have to develop ways to work around what I cannot do, and figure out what I can do. I need to understand self-assessment and self-awareness issues from the inside-out, from top-to-bottom.

I’ve come across some good reading, and I think I have some good ideas.

Reading List

Strategies

  • Write ideas down and review them before “floating” them with others. This lets me get clear — on paper — about my ideas before I open them up to others, and it lets me edit my “content” before it goes in front of critics — even well-meaning ones — who may (will) find fault with my ideas.
  • Actively plan and prioritize my days. My over-eager brain tends to get turned around about what it cares about and what’s important. I may start out the day planning to take care of my banking, only to find myself drawn into re-compiling my personal e-mail contact list. I have only banker’s hours to get my banking done, and I can do my e-mail list-keeping anytime, but my brain — if it’s not directed with clear priorities — can forget that I’m time-constrained and I can lose days of productive opportunity, while I’m fiddling with my computer. My brain also tends to get “sucked in” by one exciting (but transient) idea after another, seemingly without rhyme or reason, but with frustrating results. An activity like researching songbirds of Idaho may seem very important to me, one day, may not be that important, the next. But I’ll spend all day working on one idea (like researching songbirds) that doesn’t have “sticking power”, then move to another (like tracking NASCAR results for the past 10 years), then move to another (like identifying number patterns in the last two years of Big Game lottery results), then move to another (like healing family dynamics trauma)… until I have started a whole lot of things and not finished any of them. Planning and prioritizing and sticking to my structure keeps me on target. And makes sure I get to the bank on time.
  • Keep a journal… and recap frequently. This lets me “blow off steam” and wax eloquent about things I care deeply about, without allowing them to derail my entire day. It also lets me see where my thought processes are going, and it lets them just “go there” without investing a whole lot of active time and energy in exploring them. For example, I became convinced, two years ago, that I wanted to become a massage therapist/bodyworker. I had this intense desire to learn the inner workings of the human body, so I could use it for healing work. That lasted about a week. I wrote about it in my journal, and I gave my mind free rein to “experience” being a massage therapist in exhaustive detail. What I realized is that the idea that my mind thought was fabulous, was onerous to the rest of me. My brain thought doing body work on others would be a good path. My body and heart and spirit actually disagreed… I’m not the kind of person who does well with a lot of folks with physical ailments that need to be addressed. And when I went back to my journal and re-read the pages, I could see what my thought process was that convinced me that I’d “found my true path” to massage therapy. Seeing that thought process in place, and realizing just how off-base I could be about things, was a sobering reality check. And it a highly valuable lesson in seeing what my brain is capable of telling me.
  • Read the stories of others like me. This is a huge one with me. Because I sometimes cannot even see what’s happening with me, unless I see it mirrored in others. So, I look around online for people who are writing about TBI. Or I check out books from the library. Of course, there’s the danger that I’ll over-identify with people who really aren’t anything like me. But reading about others’ struggles and successes with TBI and other neurological challenges can be tremendously helpful. It also helps to keep a journal about what I read, so I can compare my own notes with what I’m reading. I have to be careful that I don’t internalize information that’s not pertinent to me, but when I find info that does apply to me, it’s priceless. Now, one of the problems with reading TBI stories is that people appear to often lose steam talking about their situations, so you don’t get the whole picture about them. Especially online. I think that people start out with great intentions and want to pass along their experience, strength, and hope, but they either get overwhelmed, they lose their focus, or they don’t get the kind of feedback they were hoping for. Or they get too much — and they get overwhelmed, which is what can happen with me. It may happen to me, yet, with this blog. Who can say? All I can say is, it’s not always easy to find online long-term, in-depth accounts of living with TBI.
  • Be humble and honest and a bit agnostic. I always have to remember that I could be wrong about a lot of things, and I don’t dare kid myself. I have to be 100% honest with myself — not as honest as I want to be, but as honest as I must be. The minute I start lying to myself intentionally, I know I’m in trouble. Because even when I’m being as honest as I can be, I may be wrong. So, lying undermines my already tenuous grip on “reality” even more. This is especially important with my family and closest friends. I have to be honest with them about myself and my abilities, even in the face of their fear, anxiety, panic, frustration, denial, etc. If they can’t be 100% honest with themselves about me, I have to take the lead and show them how I do it. I don’t always succeed as well as I’d like, but I have to model a brazen sort of fearlessness with them, so they can see that truthfulness is possible, even in the face of such a tricky condition.
  • Find support from capable folks. Having a counselor or therapist is hugely helpful, and they can offer you more objectivity than emotionally invested family members. It’s their job, after all, and they’re professionally trained. Having support — from a counselor or support group — takes the pressure off your loved-ones to be your “everything” in overcoming TBI. And having someone available to do a reality check (in a safe, supportive environment) on a regular basis can go a long way towards building self-assessment skills.

Yes, self-assessment and self-awareness challenges are big ones. For me and other TBI survivors. But because others often know so little about us and our condition, we have to learn to do a lot of it ourselves. But having external tools like journals, priority lists, stories of others, willingness to be honest, and the input of outside emotional/psychological supporters, can go a long way towards helping a TBI survivor improve their self-assessment skills.

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When they think your TBI is PTSD

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

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

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

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

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

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

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

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

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

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

This article was very helpful:

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

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

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

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

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

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

Other posts about PTSD:

Better today… of pain and ptsd

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I’ve been waking up early a lot, lately

This morning I woke up at 5:00. That isn’t very early for some people, but is early for me, especially since I didn’t get to bed till midnight, and I need 7-8 hours of sleep to be fully functional. I’ve been pretty tired, lately. Needing to catch up on my sleep. But try as I might, I can’t seem to get myself to bed before midnight, and I can’t seem to sleep past 5 or 6 a.m. I do what I can to get naps in during the day, which helps, but it’s been a long time since I had 8 solid hours of good, sound sleep. That’s what I’ve traditionally needed, ever since I was a kid, but it hasn’t happened for a while.

This is really nothing new, actually. I’ve been waking up at 3 a.m., on and off, for the past three years or so. Since I fell and whacked my head at the end of 2004, I haven’t been able to really sleep the way I want to. I either can’t get to sleep before midnight/1 a.m, and/or I can’t sleep past 6 or 7 in the morning, and/or I wake up throughout the night, and/or I wake at 3 a.m. and can’t get back to sleep. All told, I’m lucky if I get 6 hours of sleep a night. I can’t remember the last time I had a full 8.

I’ve often resorted to just getting up at 3 a.m. and busying myself with things I meant to do the day before, but didn’t get around to… then hoping that I’ll wear myself out and get back to bed for an hour or so of additional sleep before my day officially starts at 8 a.m. That’s worked for me in the past, but as often as not, I find myself caught up in the little “asides” I pick up, and I don’t get back to sleep. Then I spend the rest of the day worn out and frazzled.

I’ve become increasingly accustomed to being tired all the time. It’s not such a bad thing… unless I think about the impact it may be having on my health. It certainly doesn’t help my headaches any.

Speaking of which, I have another one today. I’ve been pretty much headache-free for a few days — that is, I’ve been at a .5 or 1 level, instead of the usual 3-4 level (on a scale of 1-10). Today it feels like a 3, for starters. In the upper occipital area — back of my head, around the middle, near where my skull starts to curve around towards the top. I’m not entirely sure if the headache is due to stress and strain and thinking too much (I started doing that at 5:30 this a.m., when I realized I couldn’t get back to sleep and started fretting about things like work and jobs and paying the bills)… or maybe it’s muscular. I did go to the gym yesterday and had a good workout. I’m sore, now, including my shoulders and neck, so that could have something to do with it.

There’s a pronounced ringing in my ears, too — it tends to accompany my stronger headaches, if I’m at a 3 or higher. It’s a hollow, high-pitched, whining ringing that’s constantly in the background. If I thought about it, it would be maddening. But I’ve had most of my life to get used to it, so it’s just there…

But back to my sleeping patterns. Sleep disturbance is a common after-effect of a TBI, and when I look at my sleeping patterns in terms of my most recent injury, it all makes total sense. Although I sustained a TBI when I was 8, I don’t think that sleep disturbances weren’t a part of my life till I was injured in 2004. Even when I was 10, I was able (and eager) to go to bed by 9 or 10 p.m. and I could sleep through till 6 or 7, no problem.

After getting 8 hours of sleep a night, come hell or high water, ever since I was a kid, all of a sudden in 2004-2005, I just couldn’t manage to sleep through the night, and it made me crazy… until I resigned myself to it and just tried to adapt with afternoon naps. I’ve been an avid Saturday/Sunday afternoon napper for many years, even before my patterns were disrupted. But in the past three years, it’s become a really necessary part of my weekly routine.

Of course, three years ago, when I was waking up at 3 a.m. every night and unable to catch up on my sleep, I blamed job stress. Certainly, that could have something to do with it, but I was stressed before my injury, and I wasn’t up in the wee hours every single day. Not like I was after the fall. And after I left that job and had less stress in my life, I was still hassling with sleep disturbances.

I’ve been looking around online for resources on sleep disturbance. Over at http://www.tbihelp.org/sleep_disturbances_following_tra.htm, they say:

… It is generally accepted that sleep is usually regular and predictable. For instance, when a person is about to go to sleep, neurons within certain parts of the brain (e.g., the brainstem, thalamus, hypothalamus, and basal forebrain) become more active and prepare the person for sleep. Other areas of the brain then become involved, and seratonin is released, which facilitates the sleep process even more.

When the brain is injured (the severity of the injury does not appear to matter), the person’s sleep/wake cycle often becomes disrupted. Thus, many people who have sustained a brain injury experience difficulty getting to sleep, maintaining uninterrupted sleep, and subsequently remain quite tired during the day. Even those with mild TBI report sleeping difficulties. It has been found that when these individuals do sleep, their sleep is lighter, and less restful, where they often awake during the night. When a person is not getting enough sleep at night, they often become excessively tired during the day, and frequently experience depression. Unfortunately, while there are some studies that demonstrate particular sleep disturbances following TBI, there have not been any large studies that investigate the different ways in which such disturbances impact upon other areas of a person’s life (e.g., cognitive impairments, psychological functioning).

The article may be found at:Drake, A., & Bradshaw, D. (1999). ‘Sleep disturbances following traumatic brain injury’. Brain Injury Source, 3, Brain Injury Association: Alexandria, Virginia.

Since the article dates back to 1999, I suspect there have been larger studies about how sleep disturbances impact the lives of TBI survivors (not to mention their family members and employers).

Then again, other more recent studies report the need for more studies… Hopefully there will be more work done on this. I’ll need to check more recent brain injury research for updated information.

Other links about TBI and Sleep Disburbance:

It’s encouraging to see that researchers know this is an area that needs more exploration… and calling for more studies about sleep disturbance after tbi. As the “Sleep Disturbances after Brain Injury” site says:

Problems with sleep are another poorly understood, but absolutely central problem after brain injury. As serious of a problem as overattending fatigue can be, if the injured person doesn’t start the day refreshed, it can be debilitating.

I’ll say! When I had my fall in 2004 and went back to work A) without having a clue that I’d been injured, or to what extent I’d been affected, and B) never getting adequate sleep to keep up with not only my healing but also my day-to-day experiences in a highly stressful job, the results were personally and professional catastrophic.

Not only could I not cope with the day-to-day demands of everyday activities, like keeping up with my chores, cleaning, taking care of the house, doing yard work, etc… but I couldn’t keep up with my workplace responsibilities. I became increasingly hostile to people around me, I became insubordinate to my manager(s), I lashed out at co-workers without provocation, and I frankly scared a lot of people at work with my temper and my intensity.

Everything around me became that much more “amped up” with me, and I had a very hard time both moderating my reactions to people and regulating my pro-active behavior. Eventually I had to leave… though nobody understood exactly why I’d imploded. Least of all, me.

I’m convinced that lack of sleep exacerbated a lot of issues I had, and not only made me more difficult to deal with, but also prevented me from healing adequately. Not getting enough sleep pushes me to the point where I had ongoing difficulties navigating the social landscape at work, and my self-confidence was pretty much shot, as a result. The emotional fallout from that has been intermittently devastating, and it’s still causing me grief, trying to figure out how to integrate into the working world in a positive way — meeting the needs of my clients, as well as my own physical demands.

Yes, sleep disturbances are a huge problem for me. I’ve been plagued by them for over three years, now, and it’s a huge pain in my neck. But knowing that they can be traced back to my TBI(s) helps tremendously. Now I can explain it to myself and the people around me. Now I can put it in terms that actually make sense to other people.Now I don’t feel quite so helpless and alone anymore. And that makes all the difference in the world.

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TBI Symptoms “Laundry List”

Here’s a list of TBI symptoms I came across at Headinjury.com (http://www.headinjury.com/checktbi.htm). I’m in the process of running down through the list and identifying specifics about each of them as they pertain to me — and have, for many years. It’s pretty daunting, at first, but ultimately it’s good to have a detailed list of what the issues are, so you can directly address them as effectively as possible.

Persistent Intellectual Impairments

  • Memory problems

  • Difficulty concentrating

  • Attention Difficulties

  • Easily Distracted

  • Misplacing or difficulty tracking things

  • Difficulty making decisions

  • Difficulty solving problems

  • Difficulty understanding spoken instructions

  • Difficulty understanding written instructions

  • Difficulty finding words

  • Difficulty communicating thoughts / feelings

  • Unintentionally repeating the same remarks

  • Unintentionally repeating same activities

  • Stuttering or stammering

  • Difficulties doing simple math

  • Impaired abstraction or literalness

  • Mental rigidity

  • Deficits in processing information

  • Deficits in sequencing information

  • Difficulty executing or doing things

  • Difficulty starting or initiating things

  • Difficulty handling work requirements

  • Difficulty handling school requirements

  • Having to check and re-check what you do

  • Disoriented by slight changes in daily routine

  • Unsure about things that you know well

  • Difficulty learning new things

  • Doing things slowly to insure correctness

  • Decreased capacity for reality testing

  • Impaired ability to appreciate details

  • Impaired ability to benefit from experience

  • Inappropriate responses to people & things

  • Difficulty taking care of your self

  • Difficulty taking care of children

 

Psychological Consequences

  • Impaired sense of self

  • Fear of loss of control

  • Easily agitated or irritated

  • Easily startled

  • Feelings of paranoia

  • Spells of terror or panic

  • Feelings of depression

  • Feelings of shame or guilt

  • Persistent anxiety

  • Anxiousness or feelings of fear and dread

  • Feelings of discouragement

  • Withdrawal or social isolation

  • Feeling others not appreciating your difficulties

  • Feeling everything is an effort

  • Feeling inept or worthless

  • Laughing or crying without apparent cause

  • Worrisome thoughts won’t leave your mind

  • Making up explanations for things

  • Insensitive to others and social context

  • Diminished insight

 

Persistent Mood Disorders

  • Mood swings

  • Having urges to beat, injure or harm someone

  • Shouting or throwing things

  • Temper outbursts that you could not control

 

Persistent Physiological Impairments

  • Heart pounding or racing

  • Rapid pulse

  • Headaches or head pains

  • Increased blood pressure

  • Increased sensitivity to touch

  • Ringing in ears

  • Easily fatigued

  • Numbness or tingling in parts of your body

  • Weakness or loss of strength

  • Feeling tense or keyed up

  • Restlessness, unable to sit still

  • Lessened ability to perform physically

  • Decreased tolerance for alcohol and drugs

  • Appetite disturbances

  • Trouble falling asleep

  • Awakening during the night

  • Sleep that is restless or disturbed

 

Persistent Personality Alterations

  • Passivity, or submissiveness

  • Aggressiveness

  • Apathy, lack of interest or emotion

  • Overly sensitive

  • Discouragement or demoralization

  • Increased emotional distress

  • Chronic frustration

  • Grandiosity or boastfulness

  • Excessively talkative

  • Compulsive writing

  • Egocentricity

  • Childishness

  • Silliness

  • Overly responsible

  • Irresponsibility

  • Impulsively

  • Self-indulgent

  • Indiscreet comments and acts

  • Obscene comments or acts

  • Increased sexual activity

  • Decreased sexual activity

  • Increased shame or guilt

  • Religiosity

 

Persistent Neurological Problems

  • Sense of observing your self from afar

  • Altered consciousness

  • Slowed reaction time

  • Smelling odors that others do not smell

  • Hearing music that others do not hear

  • Making up explanations for things

  • Sensitivity to temperature shifts

  • Seeing dark spots before your eyes

  • Blurred vision, especially when fatigued

  • Double vision especially when fatigued

  • Diminished night vision

  • Difficulty relaxing

  • Twitching

  • Sensitivity to sound or noise

  • Sensitivity to light

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Great post about a soldier returning with PTSD/TBI

Main and Central has a great post about Healing Soldiers at Home. I tried to post a comment, but I got an error, so here’s my response:

Thanks so much for this excellent post! It brings together some great into that people really need to know. I’m a long-term (35 of my 43 years) traumatic brain injury (TBI) survivor, who never received assistance or help (or even acknowledgement) of my condition. I was head-injured when I was 8 years old, and when people didn’t see any immediate physical problems, they just assumed things would work themselves out. Well, they didn’t. I had to work them out, myself. That’s the bad news — years and years of isolation, confusion, false-starts, problems with peers and teachers and parents and family… problems at every turn, with no explanation of what was going on with me. Growing up with a TBI taught me a lot — most of it thanks to the school of hard knocks.

But I have to say, there has been light at the end of the tunnel. Recovery from and successful living with a TBI is possible! I’m living proof! I’ve been through the darkest of valleys, and today I’m in a stable marriage of 17 years, I have a long and productive career history with some of the top businesses in the world, I have a satisfying social life, a healthy emotional balance, and peace of mind. All this, despite living on the margins and having tremendous difficulties over the years with this TBI.

In spite of all the difficulties (perhaps because of them), I have learned to live successfully on my own terms, drawing on my own resources and making sure my own needs are met. If I had depended on folks around me to help me out, I don’t think they could have done nearly as good a job as I’ve done. That’s one of the problems with TBI — it impacts the very part of you that you depend on to identify your needs and communicate them to others.

Even though the VA and the current administration are NOT living up to their responsibilities, there is hope. Each person can find their own way to health and balance… so long as they’re not locked away in a prison of ignorance and fear. TBI survivors are all too often on their own, but it doesn’t need to be the end of the story. Each and every one of us can live up to our true potential, even in the face of limitations. Even in the face of government neglect, PTSD, and brain injury!
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I’ve got a TBI… now what?

I’ve been scouting around the web for the past month or so, looking for information on TBI, and finding a whole lot of it. Much of what I’m finding has to do with recent TBI victims/survivors, but not a whole lot of long-term survival/thriving information. Or maybe I’m just looking in the wrong place…

Anyway, since I’m both a long-term TBI survivor, as well as a re-injured individual (I had a fall in 2004 that turned my life upside down, slowly but surely, without my realizing what was going on, until the damage was done), learning and reading and talking about long-term coping strateties and rehab approaches is of particular importance to me.

Sadly, I’m not finding a lot of them. But long-term survival (and thriving) stories are so critical to read — especially since so many people are turning up with TBI, and they’re being told any number of things from “You’ll never walk or talk normally again” to “Get used to being a vegetable.” It’s a shame and a bit of a crime… people need hope! People with TBI’s need to know that there is life after head injury, and that they don’t have to live a life of disability and disadvantage.

I suspect that the reason there’s not more information about long-term TBI survival out there, is because TBI is a relatively “new” area of study, and a lot of us who have been living with TBI’s all this time, have — in a way — “gotten over it” and gotten on with our lives, despite our initial disabilities. I can’t speak for anyone else, but I when think back on how much I had to struggle through — the social difficulties, the impediments, the ringing in my ears, the confusion, the frustration, the anger… all of it — I would just as soon think about other things, like my almost-normal life. I’d just as soon not rehash all the hassles I went through.

To make matters worse, when you’re going through initial TBI coping/survival all on your own, you’re so often dreadfully unclear about what it all means, and you can’t quite sort things out in your compromised head, so the early stage fact-finding that’s happening now with Iraqi Operation vets hasn’t really taken place on the organized scale in the lives of long-term TBI survivors.

Plus, I think another factor that plays into it all, is that much of the work around TBI (that I’ve found) is being done with relation to the US military — a good deal having to do with operations in Iraq over the past couple of decades. So, a lot of the findings and work being aggressively pursued seems to be in the domain of the Veterans Administration and military-related treatments. Which separates it from the civilian population.

Another issue could be the fact that the organized medical establishment is taking a closer look (than 20 years ago) at TBI diagnosis and rehabilitation, and the literature that’s coming out of those studies is specialized and medically technical in nature. So, the really in-depth material is a bit unapproachable for regular folks.

At the same time, the people who are personally and individually affected by TBI — survivors and their families — are totally tapped out, trying to get by and adjust to all the changes… breaking up, falling apart, struggling to keep things together, exhausting themselves, isolated (and isolating) in their own personal dramas, and living day-to-day just dealing with simple things that used to be so… well, simple. But aren’t, anymore.

TBI is a bear of a conundrum, also, because it’s so varied. No two brains are alike, and TBI’s tend to be individual and varied, too. From mild TBI to severe, from the part of the brain affected, to the personality (before and after) of the survivor, there are so many different factors that it’s pretty well impossible to make broad generalizations about TBI survival. Except that it can be a real challenge, and it can last a lot longer than the people affected feel they can deal with it.

I suppose I’m somewhat fortunate in that I sustained my injuries without any awareness of what they meant. Of course, it can be terribly frustrating and frightening to have no idea why your life is falling apart… but in the same vein, not knowing that I was “damaged” made it possible for me to continue living my life without the perceived limitations of a TBI. I’m not sure I could have made the same progress in learning social skills, learning how to learn, correcting my writing, acquiring anger-management abilities, and basically accumulating all those “normal” skills that didn’t come naturally to me, if I’d been saddled with an identity of a TBI-survivor. I think that would have been absolutely devastating to me as a kid.

Now that I’m grown, it’s a different story. I have a history of successful rehabilitation and recovery behind me (even though I have had setbacks and I continue to struggle in some respects). I have a lifetime of coping — successfully and not-so-successfully — with the particular pecadillos of TBI, that inform my life choices on a daily basis. And now knowing that my head injury was the cause of so many different problems I really struggled with but couldn’t explain, now relieves me (well, it’s starting to relieve me, anyway) of that nagging sense that I’m inherently flawed, that I’m a bad person, that there’s something wrong with me.

I’m not a bad person. I’m a survivor of a brain injury. And knowing that makes all the difference.

I can stop being so hard on myself for every little thing, now. After 35 years, it’s about time 😉

But enough about me. So, what do you do if you’ve sustained a traumatic brain injury? What indeed? There are things you can do, to get back on the good foot again!

  • Look around online and read the valuable information at many websites. There’s nothing like a web page that you can come back to, time and again, for repeat reading and clarification. And printing out information to review when you’re less stressed or have more time to digest it, is very helpful.
  • Contact a local Brain Injury Association chapter and obtain information from them. It’s their job to help people like you, so give them a reason to exist!
  • Keep track of your experience and compare notes with others. It can be really helpful to see that you’re not alone, that there are others who are “worse off” than you… or who have had similar experiences and reactions.
  • Find TBI survivor blogs and read about others’ experiences. Posting comments and words of support and making contact with others like you can alleviate your isolation.
  • Reach out to support groups or other professionals, like counselors/therapists. Just find someone to talk to, who’s outside your personal sphere of influence, so you can say what you can’t say to your immediate family… without threatening your home stability 😉
  • Be patient. This all takes time, but things can sort themselves out. You just have to keep at it. I can personally testify that there is always the chance that you will recover far more than others expect. And hard work pays off. When the going gets tough, keep your head down and keep plowing at it — your efforts won’t go unrewarded!

Technorati tags: brain damage Brain Injury brain childhood counseling Emotional Fallout Employment fall Family Issues head injury Head Trauma headache health insomnia Mild Traumatic Brain Injury mind mtbi Neuropsychological Effects of TBI pain Personal Experiences with TBI psychology psychotherapy ringing in ears rock self-assessment sleep disturbance Social Issues TBI Physiology TBI Rehab tbi survivor TBI Symptoms tbi testimony tinnitis trauma traumatic brain injury

TBI & Polytrauma Single-Topic Issue in JRRD

The US Dept of Veterans Affairs has some great information at http://www.rehab.research.va.gov/jour/07/44/7/contents.html

Here’s hoping that folks suffering from TBI will be better served — especially our veterans.