Continuing to Continue

After being almost dead, part of your rehab is consensual. Here’s what I mean. If you have a broken leg, orthopedists will put a cast on it, or do surgery, or whatever they need to do to get the bones lined back up. It’s immobilized, and with any luck at all, the break will fuse and you’ll be up and around pretty quickly – and all you had to do was wait!

After a TBI, if you are blessed with an almost-full recovery, you live two lives. The first is the more obvious – you talk to your family and friends, you go to rehab (if you’re lucky), you find which skills you still have and which are gone. And, wonder of wonders! You find new skills you never had before! I think of this as my “external” recovery – my husband can see it, my sons, my family, my friends – they are all (very discretely) watching to see how I’m doing. (It’s funny, they don’t think I know they are watching me, but they are.

The second life is entirely internal and is often hidden, even from me. I know my brain is still recovering – still healing. I can feel it changing. The way I feel (internally) changes from day to day.

One of the books I’ve been reading…or I saw it somewhere…had a woman with a TBI saying that what she has to do now is balance her ambitions with what she is able to do. I know exactly what she means. Some mornings I wake with roaring ambitions to do everything, but quickly find that my energies do not match.

But it’s not just about doing. I’ve had a lifetime of that. I’ve also had a lifetime of trying to please others, to anticipate what others will want from me, to talk myself out of my better instincts because…I don’t even know why.

Now, it’s like being alone in an art museum. My footsteps ring on the hard floors. Each room leads into another. There is beauty of one sort or another everywhere I look. But each picture, each experience, needs to be looked at again and again for understanding.

I’m not sure that’s clear. It’s like coming home after you’ve been away for a very long time. That old house on the corner has been torn down and now it’s a donut shop. Every time you drive past it surprises you again. Each new reality is like hitting your toe on a table leg in the dark.

I must have been a frustrating patient for my rehab therapists. So many of my skills came back fast and fully – and I can usually hide the deficits. I kept pushing to find ways to fix the parts that were broken – and they tried very hard – but the deficits are hidden away under layers of things I can do.

I told them when we found something that directly addressed something that was wrong it felt like someone was scratching that itch you can’t reach between your shoulders.

So now, as I continue to recover, I keep looking for the itches. It used to be understood that whatever recovery you would have would be in the first year, maybe two. Now there are some articles that say recovery may extend through ten years.

Oh how I hope that’s true! But it’s entirely by consent. Every day is a push.

It’s like rolling a peanut across the carpet with your nose. Very difficult but it feels so good when you get there.