Wednesday, January 20, 2010

“Invisible Injuries”

There was a story in the NYT yesterday about a 7-year old who’d had a stroke. Pretty scary stuff to read for any parent. Beyond the main point of the story, though, there was a quote that jumped off the page for me. David Salsberg, a doctor at NYU, talking about the recovery period from acquired brain injuries (which include surgery), and the difficulties that accompany that state called them "invisible injuries.” “It’s not like going back .. with a cast on. The deficits are not always so evident and are often more devastating.” That hits the nail exactly on the head. My arm is easy to deal with because you can measure its limitations and compare it to the other one to see that it’s not my imagination that there is a problem there. The cognitive stuff, though, and all the other issues, cannot be directly measured, so there’s always, for me, an element of self-doubt in them. Maybe it’s just aging? Maybe I’m just a wimp or a hypochondriac? Maybe, maybe, maybe.

So at the same time that I’m acutely aware of how lucky and how well off I am, especially compared to what it COULD be, I’m pushing against mist in the shortcomings department. On the plus-side of the ledger, I am alive, I can work, I can drive, I can do most of what I want to do. And then there are the things that I just cannot do any more, cannot do as well, and cannot do as much. There’s no good measure of those things, just a constant feeling of diminishment, which, to come full circle, I know I know I know is a good problem to have.

All in all, it was a helpful phrase and I’m still thinking about it. It does return me to the issue of better information at different parts of the craniotomy and post-craniotomy experience. I’ve put back on my list of things to think about putting together a series of information pages for discrete periods of time AFTER surgery: what to expect at [one week, two weeks, one month, two months, six months, etc.] There’s a ton of good information about before surgery and preparing for it, and then much, much less for afterwards, at least that I’ve found. We know so little about the brain and its functions that much of the aftermath is highly idiosyncratic, particularly because surgeries in different parts of the brain have different physiological effects. Still, there’s a lot of similarity across a variety of experiences, including the emotional effects. I wrote a post some time back called “I cry a lot” which caused Jill to point out that I was grieving. Obvious as soon as she pointed it out, but it sure hadn’t surfaced in my consciousness until she did. She’d been observing it for some time in my posts and was waiting for me to work it through; when it became clear that maybe I wasn’t getting there, she spoke up, which was enormously helpful and was the beginning of getting through that part of the forest. And I’m usually reasonably introspective and aware of what’s going on. There are a series of things like that it would have been helpful to know are common. Anyway, you get the point.

The semester is accelerating and there’s much to get done before two days in Chicago. Cheers to all.

1 comment:

  1. Invisible injuries and invisible chronic illness (ICI - there's a whole movement out there) are definitely harder for me to deal with. When I'm fatigued and walking or talking funny, people get it. But when I'm not showing it, no. I also think that for most folks the oxymoron of very smart people with cognitive deficits is tough to grasp.

    I'm amazed by all you accomplish. Take care.