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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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