I am thinking a lot about losses, these days. Loss of friends, loss of doctors, loss of family, loss of jobs, loss of money, loss of hope.
I’ve been actively working on my brain injury recovery since 2007 — nearly 10 years. I got hurt at the end of 2004, so it’s been over 11 years since my last TBI. And my expectations and hopes have varied, during that time.
I always expected to be able to build back my abilities to at least some extent. I expected to be able to be able to retrain my brain to build back my memory, to address my distractability, to handle my fatigue, and basically all-round get myself back to where I wanted to be.
But that hasn’t happened. The one area where I have significantly improved, is in my gist reasoning, which is really the biggest “functional” deficit I had. Not being able to see what ideas are important in a sea of details is one of the most debilitating effects after mild TBI. It’s also a better predictor of how well people “deal” after mild TBI.
Even if we look great on other scores, even if we only have a few measurable deficits, if our gist reasoning is not great, we’re far more likely to suffer and stumble and have troubles. Nothing seems to make sense. Nothing seems to fit together. And we make one mistake after another, miscalculating and mis-reading cues in ways that really make our lives (and others’) very difficult.
And for no apparent reason.
It’s a hidden thing. And it’s a real problem. On top of that, it’s not recognized as “a thing” by a lot of folks. One refrain I’ve heard repeated, over and over from my neuropsych, is that I only have a few measurable deficits, and they aren’t even that terrible, so I should be able to get back to my life without too much struggle. It’s been kind of demoralizing, hearing that each week, as things just didn’t seem to fit together for me. Yes, my tests said that I was supposed to be in good shape — better than I felt I was. Yes, my tests said I have just a few deficits. But nothing made any sense.
It just didn’t make any sense at all. And it’s been constant work for me to get myself to a point where A) I don’t feel stupid and lazy and useless, and B) I actually understand the nature of my issues and can deal effectively with them. I’ve worked at it, I’ve really concentrated on it, and I’ve made some pretty amazing progress, actually. Even more than my neuropsych ever expected.
The thing of it is, if I’d listened to them and just and said to myself, “Well, my measurable deficits really aren’t that many, and relatively speaking, I haven’t been impacted nearly as badly as other people have,” I might have just sat back and not worried about it… and kept screwing up. I probably never would have made this much progress. I wouldn’t have had a need to. I could have just scaled back my discontent and kept my sights lowered, and eventually just settled in to working around the specific problems I had.
But a focus on the specific problems is a huge problem — especially with gist reasoning. It completely misses the point. Gist reasoning is about bringing everything together to sort through it and make sense of it, and if you just think about (and disregard) the smaller pieces, it’s not going to help you build overall strength in your gist reasoning.
So, just looking at my handful of small deficits wouldn’t have helped me at all. At the same time, sitting back and saying, “Well, I’m not nearly as bad-off a other people are, so I should just get on with my life and not worry about it,” would have put the kaibosh on my progress. Because in fact it’s the combination of taking those small things seriously and tweaking them — within the context of my overall functionality — that kept me going over the years.
And it still does.
Now I am changing neuropsychs, and it will be interesting to see how they approach things. I’m a lot less concerned than I was before, because I’ve been thinking about all the ways my old neuropsych was wrong, over the years. I’ve always felt that dealing with their wrong-ness was even more helpful than dealing with how they were right. It’s been an important process for me, to really think through what they’ve told me, and decide for myself if they were right or wrong. And the times when they were wrong – oh, so wrong – have been pretty educational for me.
So, yes, they can go, now. Sure, I’ll miss them. But it’s not the end of my world – it’s the end of one part of it, and the beginning of another.