Who I am is not important. Who you are is. Never mind, whether I am male or female, white or black or brown, or some other ethnicity or combination, thereof. I am a human being, and I’ve sustained a number of mild traumatic brain injuries (also called concussions, mild TBIs, or mTBIs), over the course of 40-some years. To date, I’ve counted nine distinct injuries that disrupted my life. Those are the ones that I can recall. Falls, sports injuries (soccer and football and just horsing around), motor vehicle accidents, and assaults have all taken their toll, each one a little different from the last. Suffice it to say, I have had an active life. And I have the bumps and lumps to show for it. There are probably many other TBIs I cannot recall because I was drunk at the time, or I just got “dinged” and moved on, and nobody paid any attention to the possible issues I was having.
Over the course of my life, I’ve had plenty of issues as a result of getting clunked on the head. Memory issues, anger management, temper tantrums, rage, anxiety, panic attacks, noise and light sensitivities, tactile defensiveness, troubles understanding what others were saying, problems expressing myself, short-term working memory problems that left me wondering many, many times, what just happened? Coordination issues, sleep disturbances, crushing fatigue, chronic pain. And more. A lot more. That’s the short list. And it doesn’t even get into the relationship problems I’ve had, the job troubles I’ve had to slog through, and the learning, reading, and writing problems. I was always a good speller, until my last concussion. Then suddenly, I was spelling words from the inside-out, beginning them in the middle and putting the starting letters in the center of the word.
My last mild TBI was ten years ago in 2004, when I fell down a flight of stairs and got knocked out briefly. You wouldn’t think it was that big of a deal. After all, But it was the latest in a long progression of head injuries, and it was the straw that broke the proverbial camel’s back. Over the course of a decade, I watched my life fall apart for no apparent reason, and then I rebuilt it as a result of luck, insight, skill, and a ton of hard work. Less than three years after my fall in 2004, I went from having several hundred thousand dollars in retirement savings (which actually isn’t much, by today’s standards), to being living paycheck to paycheck with no money in the bank and mounting debts that amounted to more than a year’s take-home pay.
Now, after more than five years of working my ass off, I’ve got a steady job, I’m out from under that mountain of debt, and much is normalizing around me.
But still things seem different. They seem weird. I don’t “feel like myself” most days, and sometimes when I look around at my life, I have no idea where I am, or how I got here. In some ways, I feel like a stranger to myself. It’s hard to explain, but I don’t feel like “Me” a lot of the time. I know I’m functional, I am a responsible, tax-paying, job-holding citizen who is active in their community and daily life. But I don’t feel like the “old me”. Not anymore. My life has been restored in many important ways. And yet, my Sense of Self has lagged.
I know I’m not alone. On my blog, many people comment that they feel the same way. Some of them are TBI survivors, others have other issues. But from TBI survivors, I hear frequently, “I just don’t feel like myself.” It’s both sad and inspiring. In the face of that kind of inner adversity, we’re keeping on. But most days it’s more sad, than inspiring.
In the past 20 years, massive strides have been made in understanding and treating TBI. A lot of it has to do with the Iraq and Afghanistan conflicts, and the steady stream of brain injured veterans who are re-integrating into society. Suicide takes more lives from our veterans, than actual combat, and TBI is implicated in that. It combines with PTSD. It makes everything harder. Much has been done to help caregivers and survivors and supporters understand the nature of the injury and what to do about it.
And yet, for all the progress in diagnosis and treatment, one aspect of the persistent mild traumatic brain injury experience seems chronically overlooked:
The Question of Self
or perhaps more precisely
The Loss of Self ... and
The Question of Rebuilding a Sense of Self that actually feels like the Real Thing
For some reason, after TBI, we can lose ourselves. We can get separated from parts of ourselves that make us “who we are” — sometimes some of the most important parts of ourselves that give our lives meaning and purpose.
Loss of self can be one of the biggest hurdles of TBI — it’s confusing, disorienting, frustrating, and is one of the biggest challenges to overcome. There’s no lack of evidence that it’s a problem for TBI survivors; “I just don’t feel like myself,” is a common complaint/ observation from those working their way back from traumatic brain injury, and I’m no exception. For years, I haven’t felt 100% like myself, and despite my progress over the past five years of neuropsychological rehabilitation, I still don’t feel like I would like to. It’s like there’s something missing — some pieces that don’t quite fall into place.
And yet the question of losing (and possibly finding) a Sense of your Self doesn’t seem to be discussed much, outside of the official literature. It would appear that it’s not even a concern, outside the charmed circle of those who “get” TBI and the havoc it can wreak. It’s mentioned in passing, but compared to things like motor coordination issues and emotional volatility and behavioral problems, it doesn’t appear as more than a blip on the screen of TBI issues. This, in my estimation, is wrong. Losing your Sense of Self after TBI adds stress and confusion and a burdening biochemical load to the post-TBI experience. Not being able to navigate through life as “you”, not being sure about how to go about things, related to people, or understand yourself and where you fit in the overall community, makes an already difficult situation even worse. And all the while, it’s a hidden burden, denied by all those who say, we’re “fine” and we should be “over it by now.”
Thousands upon thousands, maybe millions, of people are struggling with a fundamental loss in understanding who they are — a central, hard-won aspect of their lives that makes everything else possible — and yet the discussion around it (and the training of those who are impacted, both as survivors and as supporters) seems to be almost, well, non-existent.
To me, this is a problem. Here we have one of the most vexing and persistent issues of TBI, which causes all manner of suffering for survivors and their families, friends and co-workers, and yet who’s talking about it?
Why? Well, it could have to do with the fact that so many traumatic brain injury survivors are so involved in just getting through their day, putting one foot in front of the other, that they don’t have a lot of bandwidth to plumb the depths of their sense of who and what they are. It’s tough to find the time to do personal development, when you’re struggling with things like not losing your car keys, being on time for important appointments, and paying the bills. And for many, the complications of navigating complex bureaucracy of government agencies, raising kids, putting food on the table, and figuring out how to hold down a job, makes the whole situation even tougher — all against the backdrop assumption that “it was just a bump on the head — you should be fine.”
It could also have to do with insurance. What’s paid for. What’s sanctioned. What the rehab programs are making possible. It might also have to do with metrics. Evaluating a person’s Sense of Self and getting a quantitative measure of the effect it has on their life, is well nigh impossible. It could be, there are questionnaires out there in use by professionals who can correlate Sense of Self with some marker, such as annual salary or quality of life, but for those of us dealing with TBI on a daily basis, those aren’t doing us much good.
Whatever the rest of the world is doing, I’m going to talk about it here. Regaining one’s Self — our sense of who we understand ourselves to be, and who we think we can become — is a key and critical piece of TBI recovery. It’s not just some academic line of inquiry best suited to papers for conferences. It’s central to our existence and our ability to recover. And I think we owe it to ourselves to spend some time pondering this vital “gray area” aspect of who and what we are… and find new ways to bounce back from the problems life sends our way, while coming to a new understanding of who we are and what’s possible for our future.