Someone posted some great comments/thoughts on my blog the other day — http://brokenbrilliant.wordpress.com/have-you-experienced-a-brain-injury/ and so I’ve been thinking a bit about what it means it “recover” from head trauma.
I had a great visit with my neuropsych last week, and they actually told me that while I was completing their tests, I used some very effective coping mechanisms to answer the questions and complete the tasks, so my actual numbers are “inflated” (are better) compared to my actual abilities.
I used strategies like visuals to keep track of memory tasks. I also did things like not doing things in the proper order, so I could complete the tasks to my satisfaction. I improvised at times, rather than just doing straight-out what I was told to do. And it apparently made my scores come back higher than they truly are.
Of course, it’s a bit late to re-take the tests… eventually I’ll see a final report on the findings, and I’m kind of working at bolstering my self-esteem, so when I do find out what my scores are — or “should have been” — I won’t get too depressed over it.
I have to remember — I’m doing great — so great, in fact, that most people have no clue I’m a TBI survivor. But I know. And how do I know!
I’m really wrangling with the details of my own ‘recovery’ at this point — finding out that my coping strategies are actually a whole lot better than I ever suspected… and at the same time finding out that I’m a lot more impaired than I ever imagined I was. It’s such a double-edged sword.
The fact that I’m doing so well is both a testament to the power of the human spirit and will, as well as a warning shot across my bow, that I can’t afford to “buy my cover” and get too cocky. On the one hand, it’s evidence that I’m doing well, but it’s also a kind of proof that I’m not. At least not as much as I appear to be.
I think, for me, the real test of how well I’m doing/recovering has a number of different sides:
First, how well am I integrating with the rest of the world? How seamless is my interaction? Can I get through social and work situations without pissing people off and doing real damage? And can people even tell that I’m brain injured? It seems a little sad, that my true measure of success is not how GREAT I’m doing, but how well I’m managing to NOT do badly. But I’ll take it.
Second, how well am I monitoring my own situation? Am I factoring in my deficits, so I can avoid screwing up left and right? Am I being cognizant of my limitations, so I don’t overextend myself and get into trouble?
Third, am I remembering — in the process of dealing with others — to not buy my cover? I can’t afford to get cocky. That can spell disaster. I must always, always, always keep in mind that how I present has a lot to do with “theater” — that I’m playing a role in a world that doesn’t understand or make room for my limitations. And that this role is just what I do to get by. In no way, shape or form, should I ever lose sight of the fact that when I step out of my house, I’m taking on a persona for the sake of effectively interacting with an essentially hostile environment. It’s not 100% me — much of “me” I need to leave at home and swap out for a version of me that appears to be fully functioning. And at the end of the day (literally), I need to revisit my day and sort through what happened to make sense of it, parse out what my experiences were, learn from them, and remind myself that in some ways I’m doing better than one might expect, but in some ways I’m doing far worse than anyone else realizes.
Fourth, am I able to do more than just exist? Am I able to go just one step farther in my actions and interactions, to make a positive contribution to the situations I find myself in? Am I able to help where I can help, and (at the very least) not hurt when that opportunity presents itself? Am I able to get something from the situations I’m in, too, so that my life becomes more than just base survival? Sometimes it’s all I can do, to keep up with a conversation or remember what happened a few minutes ago. But if I can at least come away from an interaction with someone having gotten something of value — information or a greater sense of connection — as well has having offered something in return, then my efforts are all worth it. Sometimes, I can’t do much more than a little bit. But if I can do just a little bit more than the bare minimum, then I figure the experience was a good one. Or at least a lesson.
Fifth, have I learned anything from all of this? I keep a journal, and I contemplate my life while I’m driving to and from work. I don’t always “get” everything that goes on around me, but really, who does? We all have limitations, we all have our issues. And on some level, we’re all essentially clueless in the grand scheme of things. That both frustrates and relieves me. As much as I would like to think I’ve got it all figured out — or that I eventually can — it also takes the pressure off for me to realize my limitations, especially when it comes to my brain. Great Mystery is just that — Great Mystery.
I guess at the bottom of it all, what saves me is Grace. And mercy. And hope. it doesn’t make much sense for me to lose hope (permanently) because my broken brain gets signals crossed and it tends to think things are different than they are. I think things are worse than what they are, and I think that they’re better than they are. So, I don’t have all the answers, and it doesn’t make logical sense for me to lose hope and just give up.
Ultimately, it may sound cliche, but it’s not about the destination, it’s about the journey. It’s about finding points along the way that make my life wonderful and meaningful and educational and inspiring… Muddling through those places of confusion and frustration and taking something away… I’m “greedy” that way — I always need to have something decent to show for my hassles. And I’ve had so many hassles, I’ve got plenty to show for it all. Whether that’s “decent” or not, is anybody’s guess ;)
So, when all is said and done, and the day is over and I’m looking back on it all, even though so much is incredibly f’ed up, now and then, even though I’m confused a lot and am not following a lot, even though I get turned around and Angry!!! and scared and timid and incautious and foolhardy and so very, very tired… in the end, it’s all just experience. Good, bad, and a mix of all of the above.
It’s a good thing I like adventure :)