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 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.

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.

Technorati tags: brain damage Brain Injury brain Emotional Fallout Family Issues Head Trauma headache Mild Traumatic Brain Injury mind mtbi pain Personal Experiences with TBI psychology psychotherapy self-assessment TBI Physiology TBI Rehab tbi survivor TBI Symptoms tbi testimony traumatic brain injury

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?

Technorati tags: brain damage brain mind Emotional Fallout Head Trauma Mild Traumatic Brain Injury mtbi Personal Experiences with TBI psychology psychotherapy tbi tbi survivor TBI Symptoms testimony traumatic brain injury

TBI Stats

At http://www.tbirecovery.org/Intro.html 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…

Technorati Tags: brain damage Brain Injury cognitive-behavioral issues Head Trauma journal Mild Traumatic Brain Injury military mtbi Social Issues tbi tbi survivor traumatic brain injury veterans

So, what IS a traumatic brain injury?

From the Brain Injury Association of America’s website (http://www.biausa.org/aboutbi.htm)

A traumatic brain injury (TBI) is defined as a blow or jolt to the head or a penetrating head injury that disrupts the function of the brain. Not all blows or jolts to the head result in a TBI. The severity of such an injury may range from “mild,” i.e., a brief change in mental status or consciousness to “severe,” i.e., an extended period of unconsciousness or amnesia after the injury. A TBI can result in short or long-term problems with independent function.

The blow or jolt can come from a fall, a car accident, an assault, or a sports injury, and to put things differently from what’s shown above, one person’s life-altering jolt is another person’s insignificant bump. The effects of a blow or jolt depend on the individual, and an impact that may not affect one person that intensely may completely disrupt the life of another person. It’s all very individual, and assessing the damage and addressing it is still a somewhat imprecise science.

The Journal of Head Trauma Rehabilitation, 8(3), 86-87. defines a patient with mild traumatic brain injury as:

[S]omeone who has had a traumatically induced physiological disruption of brain function as manifested by at least one of the following:

  1. any period of loss of consciousness;
  2. any loss of memory for events immediately before or after the accident;
  3. any alteration in mental state at the time of the accident (e.g., feeling dazed, disoriented, or confused);
  4. focal neurological deficit(s) that may or may not be transient but where the severity of the injury does not exceed the following:

a. loss of consciousness of approximately 30 minutes or less;
b. after 30 minutes, an initial Glasgow Coma Scale (GCS) of 13-15; and
c. posttraumatic amnesia (PTA) not greater than 24 hours.

So, if you’re like me, and you had a blow to your head that caused you to lose consciousness for less than 30 minutes… or even if you were “just” foggy and disoriented and confused after the impact, you may have sustained a mild traumatic brain injury (MTBI).

Just because the injury was mild, doesn’t mean the after-effects are, however. A seemingly insignificant blow to the head can turn your life upside-down and keep you from living fully, year after year, after year. And if the nature of your problems and the severity of them is never fully assessed or understood, the effects can be personally, socially, financially, and spiritual devastating.

Part of the problem with mild TBI, in particular, is that the effects can be largely emotional and behavioral (and thus social) in nature, so they can be interpreted as being “emotional problems” or “mal-adjustment” rather than a legitimate physiological problem. And so the issues can go unaddressed and minimized by folks around the TBI survivor, while the survivor suffers in silence and soldiers on valiantly in isolation, swimming in a sea of mis-information that tells them there’s something wrong with their character, their intelligence, their spirit… when it’s really their physical brain that’s having the issues.

The emotional fallout can be crippling. Living your life alone, isolated, feeling defective, and not knowing why… it all takes a toll. Being unable to sustain meaningful interpersonal relationships because of demons with no names and no faces… unable to hold down work for extended periods of time because of limitations you cannot identify or address… locked away in darkness and silence because people do not know the nature of your difficulties, and the part of you that would normally be able to identify what’s wrong is the very part of you that’s injured… the constant drip-drip-drip of erosive confusion and mounting insecurity and self-doubt undercuts your ability to function in profound and seemingly irreversible ways, turning you into a shell of what you once were. For no apparent reason.

It makes me wonder how many people are living marginal lives, unable to live up to their full potential, because of undiagnosed TBI. I know I have been. And I know I’m not alone.

Technorati Tags: brain damage Brain Injury cognitive-behavioral issues Emotional Fallout Head Trauma journal Mild Traumatic Brain Injury military mtbi Neurology neuropsychology Personal Experiences with TBI psychology psychotherapy rehabilitation Social Issues tbi tbi survivor TBI Symptoms testimony traumatic brain injury veterans

Greetings from inside my unusual head

Well, this is it, then. I’m actually going to do this thing called “record my experience as a long-term traumatic brain injury (TBI) survivor.”

Who am I? I’m a TBI survivor who’s extremely high-functioning. So high-functioning, in fact, that people just cannot believe that I’ve actually sustained a traumatic brain injury. I don’t “present” (as they say) as someone who’s been hit on the head. I’m quite intelligent, if I say so myself, I’m deeply curious about the world around me, outwardly, I’m socially engaging and interpersonally adept… and I’m really, really good at hiding the fact that 35 years ago, at the age of 8, I was struck on the head with a rock, knocked unconscious briefly, and then changed unalterably in subtle and confounding ways that were either interpreted as “behavior problems” and “just being difficult,” or I actively hid from my parents, siblings, friends, classmates, colleagues… the whole world, in fact, because if I let my shortcomings show, they’d land me in a whole lot of hot water.

What a long, strange trip it’s been, truly.

What’s even stranger is that, not until six weeks ago, did I even realize that the source of so many of my problems tracked back to a TBI. Shortly before Thanksgiving, I was laid up with an upper respiratory infection, thinking about how my life had shaped up till that point. It’s a long story, getting from being head-injured at 8 to that few days of lying in bed with a notepad and antibiotics, but long story short it finally dawned on me that the cognitive and behavioral issues I’d been having all my life were, in fact, very real. And they couldn’t be easily explained by psychotherapy, pop psychology, or my colorful personal history of (mis)adventure.

When I took a close and very honest look at my 43-years on this earth and studied my history closer than I’d allowed myself to, in … well, 35 years … it became pretty clear to me that I’d been swimming uphill against a current that was never fully explained or explored or even accepted by my exasperated parents, intimidated siblings, and confounded teachers. And it became painfully clear that if I was going to continue my life on an upward trend, rather than the erratic and intermittent upward-downward spiral/corkscrew/roller-coaster ride, I was going to have to take a long, hard look at what was really going on with me, and quit hiding behind excuses and avoidance and euphemism and actively ignoring a whole range of serious but well-hidden social, emotional, behavioral, physiological, psychological, spiritual, and neurological difficulties that have interwoven themselves into my life so completely, it’s difficult to separate them out from the “normal” parts of my life.

Lying there in bed, popping amoxycillin and waiting to feel better, scribbling away in my notebook, I realized that if I was going to actually live my life, instead of hiding away in a hole and emerging every now and then to give the appearance of living a life that others would appreciate and approve of, I was going to have to bite the bullet and face my deepest, darkest demons… demons that no one else even fully realized existed… demons that I could probably keep hidden all my born days, but will necessarily keep me from living fully and being a responsible adult, partner, employee, citizen, contributor, and human being.

Make or break time… time to come out from under the rock. Time to step out and let people know what’s happening inside my head. For once.

Because living with TBI is probably one of the most alienating and isolating experiences on the planet. The part of your person that’s in charge of telling you what’s going on, is hurt, and it often doesn’t know it. The part of your body that’s responsible for monitoring your behavior is not response-able, and it likes to hide that fact.

To make matters worse, so little is known about TBI in the general populace, and so much prejudice abounds about mentally compromised individuals — especially people who exhibit classic TBI behaviors like quick flashes of violent emotion and slowed (yes, technically, retarded) mental processing powers — that it’s not very safe at all to come out from under the shields you pull around yourself and interact authentically with the world around you. And if you are quite accomplished (as I am) at hiding out from others, it becomes that much easier to hide out from yourself. And you can lose touch with what your true capabilities are… what you really can do, what you really can’t… what chances you can safely take, and what you’d better not do… what activities and responsibilities you can realistically take on and perform at, and which ones are just asking for trouble, a ticking time-bomb of failure and internal cognitive-emotional collapse.

And that’s a terrible, horrible shame. Because having a TBI doesn’t make you incapable of contributing to the world around you. In fact, it can force you to develop unique coping skills that other ‘normal’ people could really benefit from learning about. It can force you to acquire a point of view that makes it possible for you to stay afloat even in the midst of the worst shit-storm on the planet… a point of view that can really help others make it through life. As a TBI survivor, you’re thrown into a snakepit of hell (again and again, time after time), and if you learn how to climb out (again and again, time after time), well, that’s not only a tremendous accomplishment in your own right, but it’s the kind of inspirational experience that can truly help others who may be less impaired, but still very much in need of help, just getting by in life.

So, my mission with this blog is manifold:

  1. To reach out to the millions of individuals (5.8 million, I’ve heard) who have sustained a TBI, along with their friends, family, and co-workers, to help them better understand traumatic brain injury information from a “lay person’s” point of view. There is a vast sea of medical research and clinical findings available about TBI, not to mention studies, facts, and tons of websites, but it’s often confusing and can be very disorienting. Having a personal “take” on all of it, might just help to humanize this scientific information and make it accessible to the people who need it most — the folks who are living each day with the after-effects of a traumatic brain injury. I hope that in reading this blog, they may be better informed about TBI and quit being so hard on themselves and others, quit being so frightened of this manageable condition, end the silence around cognitive-behavioral issues that are neuro-physiological in nature (not due to some “character flaw”).
  2. To share my personal experiences with other TBI survivors and their families, to help them overcome the feelings they may have of wretched brokenness, to let them know they are not alone and help them see that a broken brain is not the end of the story, so long as your whole body-mind-heart-spirit “information-processing system” is intact. There is more to us than what’s between our ears, and we can live full and satisfying lives, even if they are turned upside-down by forces beyond our neurological control.
  3. To relate my experiences to the psychotherapists of the world, who may be chasing the wrong demons in their counseling sessions, trying to fix “psychological” issues of TBI survivors which are actually neuro-physiological in nature, and help these therapists address the very real emotional/cognitive/behavioral/social issues which plague TBI survivors, often in secret, often hidden behind thick, high walls of shame, fear, guilt, and anxiety. There is a lot to be done in this domain, but folks need to understand the real issues we TBI survivors face, before they embark on diagnostic and treatment courses of action that serve mainly to frustrate and discourage us, and make us feel even more screwed up than we really are.
  4. To assist our men and women in uniform, returning from active duty, who have sustained a TBI in service to this great country of ours, and who are left out in the cold by a medical and psychotherapeutic establishment that often does not understand or fully appreciate their challenges and needs as TBI survivors.
  5. To celebrate my successful long-term survival from a TBI and show others how I did it… and how I continue to do it, so they can have hope and, in the words of Winston Churcill, “Never, ever, ever give up!”

As I said (I think ;), I’ve lived a very high-functioning life for over 35 of my 43 years with an undiagnosed traumatic brain injury, and I’ve experienced more success, happiness, and fulfillment in many areas of my life, than a lot of “normal” people do, with all their fully functioning capabilities. A TBI is not the end of the world, I’m here to testify. But to live life fully, I need to face up to what’s really going on with me, address my very real deficits, and design a course of action that will enable me to not only survive, but thrive… not only get by and give a pretty good impression of a highly successful citizen and contributor, but truly live up to my full potential.

So welcome to my world. Welcome to the world inside my broken-brain head.

Technorati Tags: brain damage Brain Injury cognitive-behavioral issues Emotional Fallout Family Issues Head Trauma journal Mild Traumatic Brain Injury military Motivation and Inspiration mtbi Neurology Neuropsychological Effects of TBI neuropsychology Personal Experiences with TBI psychology psychotherapy rehabilitation Social Issues TBI Physiology TBI Rehab TBI Resources tbi survivor TBI Symptoms tbi testimony traumatic brain injury veterans