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:
- Disbelief — I can’t believe it! You don’t seem brain-damaged!
- 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.
- Awareness problems following moderate to severe traumatic brain injury: Prevalence, assessment methods, and injury correlates (Vanderploeg, Belanger, Duchnick, Curtiss) Journal of Rehabilitation Research & Development Vol. 44, No. 7 (November, 2007)
- “Knowing Your Own Strength: Accurate Self-Assessment as a Requirement for Personal Autonomy” (PDF download) (Joel Anderson with Warren Lux), Philosophy, Psychiatry, and Psychology 11 (2004), 279-294.
- “Accurate Self-Assessment, Autonomous Ignorance, and the Appreciation of Disability” (PDF download) (reply to commentators) (Joel Anderson with Warren Lux), Philosophy, Psychiatry, and Psychology 11 (2004), 309-312.
- 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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