Head injury recovery - it's sort of like rebuilding Haiti

Looking at my stats to see who’s reading this blog, and seeing how they found out about it, I often come across search engine terms that include the words “slow” and “concussion” in the same search phrase. No coincidence there. Slow can refer to your brain slowing down after concussion, as well as the length of time it takes to recover. “Slow” and “concussion” seem to go pretty well together.

As the news highlights both the perceived delays in the rebuilding of Haiti after their earthquake about a year ago, and the amazing recovery of Rep. Gabrielle Giffords, I have been thinking a fair amount about how the two situations might have things in common. I think, in particular, about how Rep. Giffords’ progress has been so amazing… beyond the hopes and dreams of just about anyone involved in her recovery. And I have to wonder – not out of spite, but out of compassion – if her progress will continue at this amazing pace. I also wonder if the people around her who have been so supportive and hopeful will stay that way, if her recovery should happen to slow… even appear to reverse… in the coming months and years.

I would never wish ill upon her or anyone else, but I have to wonder if the rate of her progress will last — and what might happen if it appears to slow. Surely, it would be amazing if it does, and I certainly hope it does. At the same time, however, I wonder if the folks around her — or who are rooting for her from afar — are prepared for the possibility that she might have a very long road to recovery ahead of her. Her husband has said that she will make a full recovery, and it will be wonderful if she does. But if things take longer than people expect, or she experiences setbacks (as so many of us do), what then?

And I think of Haiti — that already dreadfully impoverished nation that was to terribly hit by the earthquake last year. In the immediate aftermath, there was a huge outpouring of help and pledges for help from many, many people. Millions upon millions of dollars were promised, and work commenced. But now, a year later, many are wondering if there’s actually been any progress. And they’re wondering where the money went.

It’s a fair question. And it’s not uncommon. In times when disaster strikes, and there’s an immediate need for help, so many eagerly pitch in… then find themselves stymied by bureaucracy or unanticipated complications that could not have been forseen. They had such momentum at the start, and they were bound and determined to Make Progress, no matter what. The will was there, the spirit was there, the determination and dedication were there.

But then things get hung up, for whatever reason. And it’s human nature to start to question the progress you’ve been making, as well as the direction you’re taking. The things that seemed so clear at the outset, get gray and muddied and stop being so straightforward. It’s one thing, when disaster is fresh in everyone’s mind, and the stress hormones are working overtime to block out gray areas and a gazillion little details that the physical system deems “unimportant”. But when the initial shock wears off, and the whole system starts to right itself, all of a sudden, there are all these little details you’ve got to contend with… all these little pieces that need to be picked up… and nothing is simple and straightforward anymore.

With Haiti, we had an initial outpouring of grief and compassion and cooperation. An initial single-minded determination that We Will Rebuild! Then the donation controversies started, and the problems of gangs of former convicts roaming the streets, and women and girls being gang-raped by maurauding men, and money disappearing or never actually reaching Haiti proper, started to come to the fore. What an excruciatingly unholy mess. Wasn’t this supposed to be fixed by now? What happened to all that money and expertise? WTF?!

With TBI, there’s often an initial outpouring of love and concern from those who care about you (if they realize what’s going on). There’s the survivor’s innermost determination that I Will Rebuild! Nothing is going to hold you back. You can do this thing. YOU CAN DO THIS THING. Then the insurance money runs out. Or you hit a wall with your neuropsych. Or you can’t seem to keep up the enthusiasm for neuro rehab. And the physical problems — the headaches, the pain, the sensory issues, the fatigue — as well as the cognitive fog and the crazy mood swings just keep coming. Everyone else says you should be fine. Everyone else says you should be on the mend. But you don’t feel like it. No way, no how. You’ve lost yourself somewhere along the way, and you’ll be damned if you can find your way back.

I’m not saying that the circumstances of TBI survivors are necessarily the equivalent of the extreme and widespread needs of Haiti, but on a certain level there are similarities. The expectations that more progress would be made by now, the determination that has a way of waning over time, the human need to see things fixed much more quickly than they can be… on small scales and large, this seems to be our lot, when things go terribly, terribly wrong.

But just as rebuilding Haiti means doing more than just putting up houses and distributing food, so does TBI recovery involve more than healing up the bullet wound or getting out of rehab. Restoring Haiti involves rebuilding the government structures, restoring utilities, building roads that were destroyed, getting schools up and running again, and ultimately making the place safe for people to live their lives, go about their business and make a living. And recovering from TBI means much the same kinds of activities, though on a much smaller, more individual scale. In same cases, executive functioning needs to be sharpened and strengthened. In some cases, physical capabilities need to be fine-tuned, or coping/compensatory techniques need to be learned. In some cases, the brain’s infrastructure of electrical connections has been so disrupted, it’s like you’re careening down a dark road without any lights or any clear view of where you’re going (let alone managing how fast you’re moving). And then there’s the learning. The constant learning. And the behavior mangement and modifications required to make you safe to deal with by your friends, family, and co-workers.

… All of which takes a whole lot longer than you ever expect it to. And in some cases, you’re never done. The old connections in your brain that used to be so reliable… some of them may be gone for good, but even though you know it intellectually, your system, your person, your identity habitually goes back to trying to do things that the old connections made possible. And fails.

Which leaves everyone around you wondering why it’s taking you so damned long to get your act together. Are you just not trying? Are you being lazy? Are you just not applying yourself? Or are you faking it for the sake of sympathy?

Problems. Problems, indeed. All around.

That’s not to say that you can’t ever get to a level of functioning you’re happy with. Not at all. But chances are good, it will take a lot longer than you or anyone else ever expected. And there will be times when you and others will be standing there, tap-tap-tapping your toes, impatiently waiting for something to change for the better. Just like plenty of people are wondering why it’s taking so long to get Haiti back on its feet.

About these ads