Thinking about TBI “recovery”

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 :)

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One thought on “Thinking about TBI “recovery”

  1. Ah, the neuropsych eval….where would we be without them. Mixed feelings about them. First and foremost they are data, one set of data in the overall picture of self and self-functioning. They can be valuable – such as in identifying deficits (weaknesses) but also in identifying strengths. For example, that you use strategies is a strength – there is no value add to taking the test again and not using those strategies. Think of it like this – if you are left handed you have a ‘weakness’ a deficit, but you learn from day one to compensate for being opposite handed in a world that is designed by righties. You have compensation strategies – so that by the time you are 45 you probably don’t notice much about being left handed. In some cases it gives you an advantage – a baseball pitcher – in other cases it is a disadvantage – Chinese calligraphy. But its you and your are familiar with it and so you don’t feel like you lost your right handed self.

    Brain injury is an alteration of a integrated set of abilities and skills with which we have become familiar and efficient – and so we are aware of difference. In your case you have had a number of injuries and with each on you underwent some degree of change. ALL folks do experience cognitive change over their lifetime BUT its slow and subtle they ease into it. Brain injury is an abrupt and sometimes gross change – or it is multiple mini-changes (such as in diffuse anxonal injury) that show up in odd and surprising ways. What results is a brain that loses it’s integrity, its synergy as a functioning unit. The ability to ‘recover’ comes down to how much and where pieces were lost, combined with age, physical health, and environmental conditions. Furthermore this reintegrated self may not have as much ‘reserve’ so that stress, which is cognitively demanding, or change, will cause your skills sets to decrement.

    I know what you mean when you say that you are proud of being in the 99% in some areas, I felt that too – and frankly I was stunned with my first neuropsych when I did 7% or 9% in some areas. But understand a few things – the overall IQ is meaningless at this point, iit doesn’t have the significance it had before your injuries. Secondly there are some functions which are not affected (usually) by TBI – and they are used to gauge what you should likely ‘norm’ at (that’s probably most of your high scores). Also what is considered normal is a VERY wide range – and so from your ‘feeling about your self’ view, the change in scores may impact you more than the score itself – that is a drop of 40 points may still have you in mid average whereas a drop of 20 points may but you low average – but you might feel the loss of to mid average more significantly because it was a stronger ability in the first place. We all lean in different ways – visual, memory, speed etc.

    The other big factor I think for the brain injured redoing the choreography – and recognizing how that will play out in how you function within your life. So if your verbal skills and reasoning skills are superior but you have a poor auditory memory you will speak better than you listen, and you will fill in the gaps of what you think you hear – but you may present as arrogrant or not interested in what others say. Or you may have a hard time with initiation or get lost in details becasue your analytical skills are sharp but you don’t have the focus and inpulse control to move to another task. Or you may rely on writing over speaking to people becuase its easier for you to organize your thinking. This is all fine to do BUT it can sometimes feel like you have a Ferrrari engine with a Edsil body. What therapy tries to do is teach you, using reality and the test scores how to see where things work and where they don’t and to assess those in a rational way so that you can know how you present or make good choices for yourself to be successful, or you can develop coping strategies or other mechanisms to adjust – so that you can become integrated again.

    While you can frequently ‘build up’ the various skill sets and there is often much spontaneous ‘recovery’ of those skills it is this unification that becomes the challenge (or so I feel) – I may have recovered 75% of my visual memory skills but I am slow at the recall and I must make the effort to pay attention in the first place. Where once I could look briefly and understand, or tolerate a distraction while looking or look at many things and then recall them all, I must now do them sequentially and orderly in a calm matter – if I do then I am very successful. My ‘instinct’ is to do them as I always have, that’s the habit of my thinking – but it ends in disaster. So don’t let the scores be you – you are you – the scores are tools, one of the many sets of tools you have to use.

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