It’s easy to get overwhelmed…

I’ve been roaming around online for a while, now, and I keep coming across more and more information about TBI, especially as it relates to returning Iraq Operation veterans. There’s a lot of vocal support for folks who came back from Iraq either in this present operation, or the one “way back when”.

The stories are heart-breaking and infuriating… as are other tales of TBI struggles (having to do with car accidents, falls, etc.)

But I’m finding that I can’t really devote a whole lot of time to other people’s stories, or I just get overwhelmed. I think that may be why there’s not a lot of consistent and persistent information from personal accounts online… people just get overwhelmed and literally have to stop all the connecting and research and what-not. Whether you’re a TBI survivor, or you’re a supporter, all that drama and emotion just gets to be too much.

Which is why I’m sticking as close to factual information as possible. The emotional toll that a TBI can take is tremendous, and those of us surviving often don’t have the resources to handle it all really effectively. I prefer to keep my emotional processing in the counseling sessions I attend regularly. I’m just not equipped to be really constructive with others in regards to that aspect of my life. And anyway, my faculties are sufficiently scrambled to keep me from knowing whether or not I’m truly being constructive.

So, I’ll stick with what facts I can… And hope that I’m not getting them turned around.

The fact is: TBI is a traumatic event and condition (hence the name “traumatic brain injury”). It changes you permanently, often in mysterious ways.

The fact is: TBI is survivable. I wouldn’t be as well-off as I am today, if that weren’t true. You can go through hell and back and come out better than before, in some ways. In other ways, you may never “recover,” but those ways are often replaceable or weren’t very healthy to begin with. It takes time, but the mysteries of TBI reveal much about ourselves that we would never otherwise discover. And that doesn’t have to be a bad thing.

TBI forced me to fend for myself. To provide for myself. To communicate with myself. To advocate for myself. TBI forced me to look deep within and find resources I never would have bothered to find, if I’d been able to look to others to meet my needs. TBI turned me into the person I am today, and my dear friends and family members are fine with me, just as I am. It took me from the ordinary to the extra-ordinary. And that can’t be a bad thing.

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 Symptoms “Laundry List”

Here’s a list of TBI symptoms I came across at ( 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

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

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!
Technorati tags: soldier military Brain Injury VA counseling Emotional Fallout fall Family Issues Head Trauma Mild Traumatic Brain Injury mtbi Neuropsychological Effects of TBI Personal Experiences with TBI Walter Reed Social Issues tbi TBI Symptoms therapy trauma Emotional Fallout Employment head injury Head Trauma headache health insomnia government ringing in ears sleep disturbance Social Issues tbi tinnitis traumatic brain injury veteran Iraq Iraqi Freedom OIF OEF Bush veterans vets neglect recovery combat

A good day… sort of… I think…

Today was a good day.

I think.

So far, anyway.

I’m actively looking for work, right now, after taking a little over a month off for the holidays. I’m finding that dealing with people — especially co-workers — during the holidays is just too much for me to take, these days. I can’t stand the hurried pace, the rush, the frantic-ness of it all, not to mention all the issues that people at work have around their families, their emotional issues, their holiday trauma-drama… It’s just so tiresome, and my coping skills could really use some improving. So, until I get/feel better this time of year, I’ve taken to checking out from Thanksgiving through New Years.

This is the third year I’ve done this. I’m a consultant, so I can adjust my schedule accordingly — work like a dog for 10-11 months, bill all the hours I can get my hands on, then take the last month of the year off. It works for me. It’s much better than getting overloaded in December and then acting out. That just wasn’t working with me. Plus, after my re-injury at the end of 2004, I just had to quit the the holiday season wholesale, to take care of myself (and spare the world from my outbursts and social uneasiness).

In the months after my fall over Thanksgiving of 2004, I became increasingly non-functional in tight spots at work — with no clue why. I became a real problem at the office, what with my temper flaring and socially inappropriate outbursts around co-workers and my concentration shot to hell and my impulse control and emotional extremes all over the map. Unfortunately, I didn’t know why it was happening to me… all I knew was, I couldn’t function around those “a**holes at work” anymore (I won’t tell you what they thought about me!), and I had to make some choices. After enduring a grueling year of real struggles with myself and others, I realized at the end of 2005 that it just wasn’t working, that combination of holiday stress and my mental/emotional situation (tho’ I didn’t realize I was dealing with a TBI at the time).

So, I decided to just quit. Take the time away from the office. Stop working. And it was great!

I have to admit, I was pretty nervous, when I first “dropped out” at the end of 2005. I am a workaholic by nature, and the longest I’d ever gone without work in nearly 20 years was 2 weeks. So, being away from an office and a client for longer than 10 working days was a whole new thing. But it was a good thing. And when the New Year came around and I had brand new clients in 2006, I realized the sky wasn’t going to fall if I wasn’t working 51 weeks out of the year. So, I did it again in 2006. Took six weeks off between Thanksgiving and New Years. And I did it again this holiday season.

Now I’m back in the job market, looking for clients. Sending out curriculum vitaes. Quoting hourly rates. Hob-nobbing and networking and schmoozing, oh my! I’ve had some good nibbles, but I’d be a lot happier if things were nailed down.

That will come. Some of my leads are very strong, and I’m feeling positive. I never mention TBI when I deal with clients. That’s not the sort of thing I feel comfortable telling people as a consultant. As a full-time permanent employee, it would make sense to tell my employer that I’ve got this disability, since the ADA was created to protect people like me/us in such a situation. But as an independent consultant, there’s just no way I’ll ever breathe even a hint about my TBI background to prospective clients.

My job is to make their lives easier, not more difficult, and throwing brain injury into the mix is not something that makes their lives easier… or my life, for that matter.

Still, a part of me pines for a full-time job that lets me be protected by legislation passed to help people like me. I’d love to be able to show up at an office and know that there are laws in place to keep me from being preyed upon, persecuted, exploited, and treated like a second-class citizen by ignorant boobs. It might take some of the pressure off.

Maybe if the independent consultant gig gets too dicey, I’ll look for a gig like that. But for the time being, while I’m still of sound mind — well, mostly, anyway 😉 — and body, I’ll keep billing at my professional services rate and retain my freedom.

Today was a good day. So far. Good progress.

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

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

How I got here

It all took me pretty much by surprise…

I have been going through a pretty intense time in my life, for the past couple of years… having trouble with work, having trouble with relationships, having trouble keeping up with the demands of daily life. Things that other people seem to find easy — keeping groceries in the fridge, holding down a steady job, having a social life, keeping the house repaired and well-maintained — have gotten increasingly difficult for me, over the past few years.

I just couldn’t go on, constantly feeling like I was playing catch-up, never being able to hold down work at the same job longer than a year or two… I’ve got a mortgage to pay, and obligations to meet, and I was getting damned tired of living in isolation. I couldnt afford to be so erratic. Not anymore.

So, I sought professional help, about six months ago. In talking to my counselor, I came to realize just how traumatic my childhood was, how many behavioral issues I had, how my relationship with my parents and siblings has always been strained… but why?!

I was trying to “track” my personal experiences that might have caused me to be the disruptive, rebellious, defiant “behavioral challenge” that I was in school and at home. What could have happened to me, to cause me to be at such odds with my parents and teachers, in and out of trouble, grades up and down, never really performing at my peak potential… What was this terrible experience I’d endured at the hands of the world, that made me so angry and bitter and aggressive?

I just couldn’t figure it out… My parents are not awful people, and even at their worst, they didn’t terribly abuse me. My school experience wasn’t great, and my teachers were often sorely lacking, but my education wasn’t some Dickensian nightmare. My childhood was just not as horrific as my symptoms would imply.

Then, I was looking around online and came across a site about recovery from trauma. I clicked through some links, followed more links, followed more links… and ended up on a page that read like a chronicle of the last 35 years of my life — it was a web page about traumatic brain injury.

Everything on that page sounded like a description of my childhood… and adulthood. From the Cognitive Difficulties after TBI to Behavioral/Emotional Difficulties, it was like reading a high-level description of my life.

And I thought back to when things seemed to change drastically for me… when I started having real problems in school and with other kids — right after I was struck on the head by a rock thrown at me by kids who didn’t like my looks. I was knocked out briefly, if I remember correctly, and was pretty “out of it” for a while after the impact. My parents had me lie down and they kept an eye on me, but they decided the hospital wasn’t the place to take me, as I didn’t seem to have a concussion.

After that incident (assault), I remember wondering why I was so aggressive with the other kids in school. Why I was so angry, why I was so frustrated, why I said and did things I didn’t mean to say and do — teasing kids mercilessly, striking out at my siblings, being a real discipline problem at home. I couldn’t seem to understand what was going on around me, anymore. I remember wondering why. I consciously noticed a difference in my behavior that baffled me. It was like I was watching a bad movie of myself doing impossible things, unable to control myself and my impulses. It never occurred to me that getting hit on the head had anything to do with it.

But it did. I’m convinced of it. I also believe that — as a very active athlete — I may have re-injured myself in sports and outdoor activities over the years. Falling down and getting a little dazed was not a rare occurrence for me, and I may have easily done more damage to my brain without knowing it.

Over the years, I’ve essentially rehabilitated myself — largely in response to the threat of being punished for things “I” did. I grew up as “problem” that people couldn’t figure out how to solve, and I spent an awful lot of time struggling to reach (or simulate) some semblance of normalcy and regularity in my life. I’ve struggled all my life with not understanding what people were saying to me right away… not being able to keep myself from saying socially inappropriate things (especially relating to gender and race and religion)… not being able to perform up to what I knew my potential was… not being able to concentrate for long periods of time… losing focus… forgetting things… struggling academically… a whole slew of issues that I can now see were 99% probably due to that head trauma I sustained around 1972-3. I’ve recovered admirably… on the surface, anyway. And I do a damned good impression of a “normal” person.

Then I slipped and fell down a flight of stairs at the end of 2004, and I hit my head — hard — on the first 3-4 steps before I pulled my head up and tore up my back in the process. After that experience, all my relationships at work started to suffer, my work product suffered, and I burned bridges with people who probably never realized that there may have been a physiological and neurological reason for why I was acting like such a bastard. I blamed stress at the time. But now I blame mild traumatic brain injury (MTBI), which can have anything but mild consequences.

My story is still far from over I’m still trying to track down all the details about my situation — taking notes about events that happened, my symptoms, possible after-effects from my injury/-ies. The more closely I look at my past, the more sense an MBTI makes. It explains a whole lot that’s baffled and mystified and frustrated me over the years.

I’m not happy to have sustained MTBI(s), but I’m happy I finally figured this out.

Technorati tags: assault attack Brain Injury childhood counseling Emotional Fallout fall Family Issues Head Trauma Mild Traumatic Brain Injury mtbi Neuropsychological Effects of TBI Personal Experiences with TBI rock Social Issues tbi TBI Symptoms therapy trauma

Headaches? Really…?

Okay, this is weird. I just realized I usually have a headache. And I have, for many years. I can’t remember ( 😉 if this used to be the case when I was a kid, or if it’s relatively recent, given my 2004 (re)injury.

I’ve been going through the different symptoms and after-effects of TBI listed on various websites, thinking about whether I’ve got any of them. And I do. Headaches are listed, but for some reason I never thought that I had a lot of headaches. Just to make sure, I did a quick check to see if I had one. Sure enough, I do. I have them just about every day.

I’ve been tracking my headaches for the past couple of weeks, and if I don’t start the day with one, I often end up with one by mid-morning or early afternoon. They can start in the back of my head, then move around to the left or right side… or start at the crown of my head, and then move down to the back. There could be more going on there… I need to check with my doctor about this.

Now, you may be thinking (and part of me agrees) that concentrating on headaches can bring them on. Certainly, tension can play a part. But the sharp stabbing pains that shoot through my skull now and then, are not something I can (or do) make up. And I have noticed them for many years. Tension only explains so much.

There could be other issues, I suppose. Serious health concerns that scare the living daylights out of most folks. But it’s good to check this out and see what’s really going on.

Then I can actually do something about it.

Interestingly, this brings up more issues of self-assessment with me. How could I have headaches on such a regular basis and be so clueless? Certainly, my pain threshold is higher than most folks’ I know — I credit years of strenuous activity and rigorous athletic training for that ability (tho’ perhaps it has more to do with my TBI than training). And I’m pretty good at blocking out things that don’t serve me.

But ignoring headaches for three decades? Or has it just been three years? That’s a bit eerie. I had come across a book over at Google Books called Women With Visible and Invisible Disabilities that talks about how some female TBI survivors don’t identify the pain they’re in… I’m wondering if that’s true for male TBI survivors, as well — if it’s particular to head trauma, that people lose the ability to tell if they’re in pain and if so, how much pain they’re in.

It’s oddly difficult for me to self-assess my own pain level. I just can’t tell, from one day to the next, how uncomfortable I am. And I’ve learned not to pay attention. I had some issues with chronic pain, about 15 years ago, and I guess I got in the habit of just not paying attention to it. Also, I’ve been physically active all my life, so I’ve usually been in some sort of discomfort from sore or pulled muscles, and if I focus too much on the sensation, it just drives me crazy. Frankly, some days the pain I feel in my body is so complete and consuming, I have to block it out, to function properly. Analgesics don’t help. Even prescription drugs don’t do the trick. So, I just think about other things.

Still, it’s unsettling to think that I’ve had headaches, all these years, and never realized it. Just as it’s unsettling to think that I’ve been cognitively impaired since I was 7 or 8 years old, and I never realized it — nor did anyone around me.

I’ve been plagued by this nagging sense of deep-seated uncertainty, ever since coming to terms with the idea of living with a TBI — and not knowing it all these years. The very idea that something so profound can be going on with me, and I never realized it, has been deeply unsettling and has caused me to question just about everything I have assumed about myself and my life. It’s caused all sorts of insecurity in me and the people close to me who are coming to terms with my situation, as well… probably thinking (too), “How could this have been the case, all these years, and we never guessed?”

I’ve also been hounded by a pervasive sense of betrayal, that my parents never got me the help I needed. True, 35 years ago, there wasn’t a whole lot people knew about the brain, and my parents didn’t have a lot of money when I was growing up, to pay for specialists and tutors and the like. But the fact that people just never acknowledged or addressed my TBI… and I was never afforded the opportunity to face it and come to terms with it and adapt accordingly… well, it’s a little much to take, right now.

But it’s a new year and a new start. I can’t sit around feeling bad about water that’s long since flowed under the bridge. I can find my own answers and devise my own course of treatment. Figuring out that I actually do have headaches is a step in the right direction.

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What makes the mind?

I’ve been giving a lot of thought to the concept of “mind,” since I started this blog. It’s true, my brain is a bit “broken” — from an assault ’round about 1972, when a couple of kids who didn’t like my looks heaved rocks at me and struck me on the forehead above my right eye, about an inch below my hairline… as well as a 2004 re-injury, when I slipped and fell down a flight of stairs, smashing the back of my head on the top 3-4 steps in the process.

The closer attention I pay to my brain, the clearer it becomes that it just doesn’t work the same way as other people’s — and it never has, since I was about 8 years old. Funny thing about TBI — the very piece of the puzzle that can put things together : the brain : is the very thing that’s damaged, so self-assessment about how things are really working, can be a tricky thing. And as you go along, other people may never realize that you’ve got “issues” because you’re merrily swimming right along, clueless about there being a real problem.

Until really big problems surface, which is more or less what happened to me.

Now, some might say that not having a fully functioning “normal” brain is the end of the world. The end of regular life as you know it. We’re so conditioned to think of the brain as being “command central” in our lives — the organ above our neck calling all the shots and being responsible for all the big decisions and control over vital aspects of our lives.

But I’m inclined to believe that our “mind” is even more powerful than our brain — “mind” being the collection of all the different faculties we have that make it possible to walk through life with grace and dignity and intelligence.

Howard Gardner’s “multiple intelligence theory” (check out his book, “Frames of Mind” for more info) explores the different ways in which people can be intelligent. And different traditions propose that true “mind” is more about one’s ability to connect with the Divine Spark within — through a religious or spiritual connection/experience — than it is about the human brain.

That’s the approach I tend to take — I consider my “mind” be a collection of my cerebral intellect, my physical intelligence, my emotional intelligence, as well as my spiritual connection with the Divine. Together, mind, body, heart, and spirit all work towards a higher “mind” than my brain alone can achieve.

This not only comforts and reassures me, but also impels me to draw on other resources that are not above my shoulders and between my ears. And the net result is a life lived in ways that are far more effective, more thorough, more deep, more meaningful, than I would probably be able to achieve if my brain worked “normally.”

What makes your mind?

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TBI Stats

At I found the following information:

Traumatic Brain Injury (TBI) is a leading cause of death and disability among children and young adults in the United States. Each year, an estimated 1.5 million Americans sustain a TBI. That’s 8 times the number of people diagnosed with breast cancer and 34 times the number of new cases of HIV/AIDS each year. As a consequence:

  • 50,000 people die each year.
  • 230,000 people are hospitalized annually and survive.
  • 80,000 to 90,000 people experience the onset of long-term disability each year.

The cumulative result is that today an estimated 5.3 million people – 2% of the U.S. population – are living with a permanent TBI-related disability.

That’s a lot of people…

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