Wednesday, August 25, 2010

I've been thinking...

As I write this, I realize it has been nearly two years since my last post. It's not that I haven't wanted to write. It's not even that I didn't have an idea of what to write. It's that I can't write. Well, maybe can't is a strong descriptor. In actual fact, I can still write. It's just that, before my brain injury, I couldn't not write. I was constantly writing down snippets and ideas. I had notepads in my car and by my bed. I sent emails to myself from work so I could work out my words when I came home--and could still catch my train of thought! I often woke up in the wee hours to write several pages at a time. I couldn't type fast enough to keep up with my thoughts.

Now, my mind is quiet. Words are hard to come by. Descriptions fall me as I struggle to name my thought. Ideas are few and far between. And the quality of my words isn't nearly what it used to be. I miss that part of my mind more than anything else.

Every once in a great, great while--like tonight--I get a taste of my old brain, and the words come. Not in a torrent, but at least a trickle. When I can, I set down at my keyboard and let them out. Sometimes, in my new life, my words come at a bad time, like when my toddler son wants to play, or be fed, or be changed. Sometimes I fight against his needs for my wants. But in the end, the words slip away and I wait the weeks or more often, months, until they return.

Two weeks ago, I finally met with the administrative law judge for my social security disability hearing. It was a humbling day, the culmination of six years of coming to terms with my brain injury, and three years of muddling through the disability process. I realized, sitting before the judge and explaining my life as it is, as well as the life I lost, that what I miss the most is my ability to write: clearly, concisely, well as quickly, continuously and professionally.

It's been hard adjusting to my new normal. Once of my greatest challenges is knowing how I can contribute to the world. I do realize, that able-brained or not, at this point, raising my son would be my priority, and my contribution to the world is raising a healthy, happy boy. But he'll be in school before I know it, and when he is, I wonder how I'll fill my days.

I love being a mom. It gives me purpose again. When Niels and I were first married, I stayed home. I would tell strangers that I stayed home because I was new to the area and there wasn't anything in my field. That sounds better than telling them I'm brain injured. Making new friends is hard enough. Now that I'm a mom, I can say that I stay home with my son. Voila! Instant respect.

But, in our church and among our friends, I'm still struggling to find my place. I've been cooking a lot. And really enjoying it. When I make a meal for my family, I feel like I'm contributing. It's also a way for Niels to gauge how I'm feeling. If dinner is ready when he gets home, it's been a pretty good day. If it's not, or if I ask him to make it, he knows that I'll be going to bed early.
I don't think people realize how much I rely on my husband to help me function. Of course, not having to support myself is a huge stress relief, which is a big part of it. But I've also learned to implicitly trust him. He can see when I'm teetering close to a crash long before I can. If he sends me to bed, I know I need to listen to him. I am more confident because he is my advocate. If I'm not having a good day, I know he can explain or excuse me. But most of all, I feel like we're on the same team, and every day is planned to make the most of my diminished capacity. We plan for down days. We limit how many times a week I leave the house of my own. We avoid crowds, concerts, restaurants, malls and any other place that would muddle my mind. These places aren't totally unavoidable, of course, but we realize that when we venture there, it will take me time to recover.

It's like I used to drive a Prius with a full tank of gas. Now I have a clunker of a brain that's only ever 1/4 full. I have to watch my cognitive mileage vigilantly. People talk about how organized I am. I used to be. I'm not anymore. Not really. I can have an idea, but the part of my brain that gives the steps to accomplish that goal is gone. That's where Niels saves me. He helps me break things down into little steps. My brain doesn't work that way anymore. When I'm frustrated or confused, he takes over the project and finishes for me. I have lists and calendars and notes all over the house. Not because I'm organized, but because I can't function without them. I carry a camera with me at all time because I can't remember things for very long.

Here's an example. We just returned from a week in Minnesota. Every day was packed with activity. We take tons of pictures. At night, we go through the pictures so I can relieve them and try to remember what happened. Each night, Niels writes up an entry on our blog so I can go back and relive the details. I upload pictures from our camera and write captions to remember the story. Even with these opportunities to make memories of my moments, I still forget so much. I remember emotions, not memories.

While in Minnesota, we visited one of my best friends. She and I have been friends for nearly twenty years. We've lived a lot of life together, and shared a lot of words. She was an early supporter of my writing career. I love that no matter how much time passes between our visits, we can always pick up where we left off.

Steph and I were talking about all this, and she was learning from both Niels and I more about what my life looks like now. We were talking about some of the tricks I've learned to cope with my limitations and she encouraged me with the idea that all my intelligence, organization (!), ideas (!) and contribution to the world were still in my head somewhere, they just needed help getting out. And I have help. I have an amazing husband, a great medical team, and a growing group of supportive friends. I may not write any more books, but maybe I can use this blog to share some of the things I've learned.

I told Steph that there's a reason that there aren't many books about brain injury written by brain injured people. It's because the part of our brains that make us able to organize, create, edit and develop a book is no longer working. She countered that I don't have to put it all together. I know how helpful to me it has been to read other people's stories. Many I can do some good here.


Right now, my head hurts and my brain is spent.

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