This post is in honor of Brain Tumor Awareness Month and ANA Awareness Week May10-16.
Most people would rather not talk about the tumor. Plus it’s over, right? Docs took IT out two years ago. Why talk about it now? You’re fine.
Except I wasn’t. Sure, I kept telling myself all was better now, as fine as could be expected. Refused to look at the bad stuff. Wanted to be a good patient, good wife, make the most of life. And to shut up.
But as long as “fine” and “could be expected” were the focus, I couldn’t get back to being me. My brain didn’t seem quite right. And mostly, I wrote shit. THAT I could never accept.
So I started complaining, just a bit at first. Told doctors it was NOT acceptable to not write fiction. I made them angry, seemed ungrateful. I laid out clearly that being able to clothe myself, clean the house, hold a job was not enough.
No. I wanted my life back.
And when I told them about pain and dizziness when I tried to create characters or stories, they looked at me like I was crazy. That was fine. Most people think writers are crazy. We were making progress.
After saying the same things to one neurologist for three visits in a row, he finally said, “Well of course you’re having trouble with linguistic thinking. Topomax suppresses that. People have trouble recalling words and such.”
The very drug that had restored my ability to function after a “brain incident” was taking away the things that made me myself. And it took 9 months to get a doctor to say it. Sort of like an afterthought. It never occurred to him that I might accept more pain if I could write again, imagine … etc.
So now I’m writing. My husband’s thrilled because I’m not only easier to live with, I’m back to being me again. Most days, that slight pain or dizziness is just an afterthought. Less of an issue all the time. We don’t have to talk about it, except…
I would never have gotten here if I had accepted being “fine.”
Check out the many patient stories at the Brain Tumor Assn website.