To Mr. Micawber, With Love

(This is a re-post.  Google lost the original one when Blogger was shut down.)

Seventeen years ago today, in what would become the first of three surgeries, Mr. Micawber (my husband) had a golf-ball sized tumor removed from the hearing/balance nerve on the right side of his brain. That first operation lasted 14 hours. The effects will last his whole life.

He had a couple of great neurosurgeons. They were very open about the immediate consequences of the procedure: loss of hearing, loss of balance, possible facial or eyelid droop. So in that sense we knew what to expect.

But there were so many things they didn't warn us about. The depression. The cognitive difficulties. The anger. The chronic fatigue brought on by a crippled brain working overtime. The permanent disruption of vision. The constant vertigo. The surprisingly disturbing tinnitus that would persist even though the hearing on that side was gone. The sense of being isolated from a healthy, non-understanding world.

A year after the surgeries, a friend of ours broke his neck in a diving accident and ended up in a wheelchair. Mr. Micawber sometimes said he almost envied our friend, whose injuries were at least obvious and recognizable.

The problem is, Mr. Micawber looks good. (I think he looks great. But I'm prejudiced.) He looks healthy and normal.

Sure, he's got some very large scars on his scalp and behind his ear, but they're mostly hidden. Like his disabilities.

To get an idea of Mr. Micawber's life, cross your eyes a bit. Now try to function like that for a few minutes. Walk around, do a few minor tasks. It's hard, because you can't see straight, and your brain has to work harder to make sense of the images it's receiving. Imagine living like that all the time.

Now go outside and spin around as hard as you can. Stop suddenly, and try to walk a straight line. Again, it's hard, because you're dizzy and feel like you might fall down. Imagine that dizziness, that feeling, never going away.

Now imagine that there's a road between your brain and your tongue, and every word you speak has to travel down that road before it can come out of your mouth. But there's a wall across the road. Not to mention a series of speed bumps. So that even when you know exactly what you want to say, the words get stuck or delayed. Sometimes they make it out; sometimes they don't. Sometimes they're not the words you started out with. But nothing you can do will break down that wall.

And if all this weren't enough, imagine that your two ears are two speakers. One is permanently broken, and the other one has been turned up to maximum volume and can't be turned down again. So, depending on the source and type of the noise around you, you often can't hear what's going on.  Or it's unbearably loud.  Or a meaningless jumble of sound. All the time.

There's more, but I'll spare you. I admit it's kind of depressing. Even family members don't really want to hear about it, and don't quite get it. They'd like Mr. Micawber to suck it up and get on with his life. What they don't see is that he struggles every day to do even the basic things most of us take for granted: see straight, walk straight, stay upright, hear clearly, speak easily.

It might have been easier for Mr. Micawber if he had met an IED in Iraq, or been a professional football player with obvious head trauma. His symptoms are pretty much the same as those of TBI (traumatic brain injury). But he's not a returned soldier or retired sports hero. He's just an average guy who had a brain tumor and whose whole life has been turned upside down by it. And who looks too good on the outside to qualify for any kind of help.

So it's kind of a bittersweet day for us both. Don't get me wrong. I'm enormously grateful he's still alive. And he can still walk, and talk, and see, and hear after a fashion. But I do wish his life could be a little easier.

I love you, Mr. Micawber. Happy Surgery Anniversary. I think.

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