I’ve found that there are two kinds of neurologists: good ones and ones who see you as a bundle of nerve fibers.
I went through several of that type when we first moved to Olywa. The trick is to have no fear about leaving them. They don’t care what you think about them. You’re just a bundle of nerve fibers. Move on.
The best way to find a good neurologist, I have found, is to ask your local M.S. society about who is on their advisory board. That’s how I found my neurologists in Massachusetts and in Maine, but not here in Washington. Here, I went with my backup plan: stab around in the phone book until you give up and ask friends.
My neurologist is at Swedish Medical Center Neuroscience Institute, and I adore her. She appreciates the idiocy of M.S. as well as its seriousness. She is very clear in her discussion of symptoms and treatments, and has been my primary medical caregiver as I recover from The Blitz.
My most recent appointment was to discuss the results from a repeat M.R.I. I had in early March to see if there had been any further changes since the M.R.I. I had when my mom and sister were here, and to decide if I should try any other disease modifying treatment, since BrainScar hadn’t worked out so well for me.
She’s been careful not to blame BrainScar for The Blitz, however. She’s made a joke out of it: she doesn’t want to have to do the extra paperwork that would involve (although I know she’s actually done it). But every time I’ve seen her since The Blitz, she has come closer and closer to saying it. And this time she actually really practically came close to genuinely nearly saying it.
“She’s had a hard time with BrainScar,” she said, introducing a new doctor to my partner and me. Let me tell you, CF and I practically danced in our chairs when the two of them stepped out for a minute.
But after my doctor returned, the visit got harder. That’s when I broke down in tears. I don’t usually do that, because doctors don’t really like it. For one thing, my nose tends to run, and that just makes another symptom they have to deal with, as well as paperwork, about which see above, although the tissues in this case were handy.
And in this case it wasn’t clear at first if the tears were sad tears or happy tears because sometimes whether or not you have a brain trauma emotions get all scrambled in your brain and come out sideways from your head and no one can tell what in fact you are trying to say or do, and what you need is a sign or something you can show of a smiling face or a frowning face depending on what your tears mean.
I can tell I’ve gotten off-track here.
I cried because I didn’t know how to ask my neurologist if she thought I would ever get back to experiencing the world with the vibrancy I once did, if I would ever get back to thinking the way I once did. Would my mind ever again be full of a hundred different thoughts on a hundred different subjects? Would my imagination ever again take me to places I couldn’t find on any map, to worlds that existed decades before I was born, to ones that lived only in books? Would my head ever again be full of thoughts spilling over each other, like a roomful of filing cabinets on spring vacation, like a lake in springtime being filled by dozens of overflowing streams and rivers?
How could I explain this to her? How could I explain how slowly my brain worked now, how agonizing every thought was, how slowly each thought takes to form, how it takes me all week just to write one blog entry, how carrying on a conversation exhausts me, how trying to sound intelligent sometimes wasn’t worth the effort?
Then I spotted the bulletin board in the examination room.
“Like this,” I sputtered in my half-croak, pointing to a full-color brochure. “It used to be like this.” The brochure was golden yellow, red, blue, green, lively, lovely.
“But now,” I said, as I moved my hand to a poorly photocopied black-and-white flyer with a rainbow on it, “it’s like this.” The rainbow’s colors were drab grays.
And that’s when the best part of the visit came. Even though I was crying full-force now, I realized I was caught by my own simile. My brain had just worked. I had just constructed a rather tidy way to demonstrate to my doctor how things used to be, and how they were now. And she understood.
“I know, I know,” she said. “It will get better. You’ve been to hell in a hand basket.” And she hugged me.
Now that’s what I call a good neurologist.