Roller Coaster

“What was the worst thing that happened in your recovery?'

What was the worst? That was tough. My thoughts wandered over the first couple of years, and it popped out. “The absolute worst was having to tell my kids that I might die under the knife.”

But then I realized that I hadn't really answered Amanda's question. Was the depression the worst? The times when I was trapped in the abyss, having suicidal thoughts? But she was probably thinking in terms of frustration. There were so many times when I was frustrated. When I hit those first plateaus in my recovery, when I was afraid I'd be stuck there, forever, still fully dependent, still thinking so slowly, unable to help my daughter with her high school algebra homework, incapable of turning my head without the world reeling about me.

I had no idea where to start, how to prioritize those incidents. Which was the worst? I stuck with what I said. “That was the worst. They were thirteen and fifteen at the time.”

I'd been invited to speak in a class for pre-med students. The course was named “The Neurology of Disease.” The idea was to expose the students to a patient's viewpoint. This was the second time I'd been a guest speaker in the class. I'd really enjoyed it the first time, last year. The students had asked good questions, perceptive questions, important questions. I'd felt I was really making a difference.

Now, here I was again with a new set of students, asking new questions.

Amanda asked. “What about the best?”

That was easier. “The first time I won a Simon game.” I saw some blank looks. “The game where you have to follow a sequence of colored lights and sounds?” I mimed holding the Simon game. “It's round with four lights, blue read , green, and yellow. You press one and it makes a beep, another makes a boop.” They all nodded.

But then I realized— “Actually, that wasn't the best. The best was a piece I wove.” I scanned their faces. “I'm a weaver, and after the surgeries, I had to relearn how to set up the loom. I made so many mistakes. It was very frustrating. I often had to take a break and cry into my pillow. Sometimes I had to rest for several days. It took me about six times as long as it used to take me. And when I was done, I wasn't happy with it. So I started all over again and I knew how to do it all. Then, when I finished weaving it, it was amazing. I would never have been able to produce such a piece before the surgeries. I submitted it for a weaving exhibit.” As I reminisced, I could feel the goofy grin on my face. “When I got the letter that it got in, I jumped up and down. I think I even squealed.”

Perhaps there were better points in my recovery, but that was the one that stood out at the time. As I write this, more of those good times come to mind—my first time back in the dragon boat, when it looked like I'd probably be able to get back to teaching, realizing I'd written a poem, that I could write poetry.

So many triumphs. So many ups and downs.

And now? They're still there, the ups and the downs, good brain days and bad brain days. But now, the good far outweigh the bad.

Even right this moment—I've got a bad headache that is getting worse and I'm writing, writing, writing, trying to capture as much as I can before the headache cripples me, hoping it won't reach that point.

The writing is one of the best things that has happened to me. I wouldn't undo the bloody brain for the world.