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:
- 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”).
- 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.
- 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.
- 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.
- 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.
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