Like When it Sneaks Up on You
So the other day I was at my computer. I was researching an article, surfing the Web for credible background, reading, and taking the occasional note. It wasn’t particularly pleasant, which is sort of off-center for me, since I love writing and everything that goes with it. I couldn’t have a better job, really. Still, except for the occasional trip down a meandering side-road (Internet cats are a serious issue for me) I was feeling fairly productive.
But it was time to start writing. I opened my word processor and chose a working title for my story. No, I thought, that’s not it. I changed it some, rearranging the words. That wasn’t it, either, so for the next five minutes or so I just sat there, fussing with it. I did say this was a working title, right? That means the title isn’t set it stone: often, a good title only suggests itself after finishing the story, so the working title is merely an identifier for the story. A place holder.
Finally, I shook myself out of that weird mental repeat-loop and placed the cursor at the right top side of the page, ready for the first words.
Oh, come on, I thought, aggravated. I pushed my mind into using a technique I’d used when I’d been the managing editor of a newspaper, working with young journalists fresh out of college. Now and then they’d get stuck, unable to find a way to start an article, particularly when the subject was something they were really unfamiliar with. They’d come to me, asking for help.
“OK,” I’d say, “Pretend I don’t know anything about the subject--which I mostly don’t, by the way, since I’m not covering it. Just tell me about it out loud.” So they’d laugh a little, embarrassed, and start talking about it. Within 30 seconds or so they were warming to their subject, words spilling from their lips like a cascade of sweet water.
“Great!” I’d say. “Stop! That’s it. Just write that.” It was so cool to see comprehension dawn in their eyes.
I’m glad to say the technique worked, at least for a while. But then the words petered out again. Frustrated, I got up, wandered into the kitchen to get myself a glass of ice water. While I was out there, I got into a conversation with my mother, who was watching her favorite soap, one she’d stuck with religiously for more than 25 years. We discussed the despicable male antagonist for a few minutes; I even allowed myself to sit down and watch it with her until a commercial came on. “Back to work,” I said, and shambled back to my den.
I struggled my way through a couple more paragraphs, becoming increasingly miserable. I felt aimless, disconnected, and grumpy, my mind all over the place--anywhere but the story I was supposed to be working on. It was as if I couldn’t generate words or put them in the right order, and not only that, my hands …
I realized that as I stared at the blinking cursor on the white screen that I was slowly flexing and rubbing my hands. They hurt.
So did my elbows, when I moved them, and my fingers. I kept shifting my feet around, too, because I couldn’t leave them in one position long before they started twinging and aching.
Like one of my rookie reporters, I felt comprehension dawn. I knew why I was having such trouble thinking and writing: I was in pain. And if that wasn’t enough, I was also fighting my way through sticky, cobwebby brain-fog. My old nemesis, rheumatoid disease (arthritis), was at it again.
Anyone who has RD knows exactly how this feels. My pain that day wasn’t all that bad. Using the ubiquitous old pain scale (one being no pain, 10 being pain so bad you’re sure your death is imminent), I’d put it at about five. No, four. I’ve certainly had to cope with--and function with--more pain than I was experiencing that day.
But pain doesn’t work like that, does it. It doesn’t have to be awful to disrupt your life. It’s like a low, vibrating background hum you can’t really hear, like the buzz of a high-power line a quarter-mile away. It scritches at your brain-stem, irritating and disorienting you. It’s not until you make yourself get quiet and listen that you figure out what it is. Of course, I’m talking about pain that barely hits four on the pain-scale. Once it rises over that, it’s easy to identify.
The brain-fog is aggravating, too. Like the pain, you don’t really know what’s wrong until you stop and think about it--which is hard to do when it’s wrapped around your head like a turban made of gauze and dust-bunnies.
I finally wrote my story that day. But to do it, I had to spend some valuable time icing my hands, resting when I really didn’t want to, and finally, swallowing a pain reliever. I hate taking pills, but I knew from experience it was the only way I was going to get back on track. I was on a deadline. This train had to go somewhere.
We get used to pain. We get used to brain-fog, and to feeling blah. We learn to function--often at top steam--even when the disease is causing us real trouble, and we’re stumbling and banging into things. Often, we don’t even realize it.Rheumatoid disease symptoms don’t have to be bad to cause problems. Figuring out you’re having them in the first place can be the hardest part of all.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?