This Is All So Familiar

March 6, 2012 at 2:09 pm (Uncategorized)

“We never give up. We begin anew.”
Lars Gustafsson, The Death of a Beekeeper

I am back. Barely.

I disappeared for the past couple of weeks because I’ve been weathering a sarcoidosis flare-up. My ankle injury upset the jury-rigged functionality I’d pieced together with the help of four different immunosuppressants and good luck.

“Why is this happening?” I asked my doctor a week ago, when I washed up in his office with escalating vertigo, blind spells, headaches—and a fun new manifestation of neurosarcoidosis, a shrill ringing in my right ear.

“You are fragile,” he said. “It doesn’t take much to set off your disease.”

It’s really quite amazing how quickly your life can fall apart. One minute you’re dropping your kid off. You take a bad step and pop your ankle ligaments. Suddenly you can’t walk, can’t drive, can’t even sit because lowering your leg causes it to throb. A few days later, your world starts spinning—literally.

We are all just one step away from radical change.

It didn’t help that I’d been here before, that twice before I’ve ruptured ankle ligaments that had then kicked off my neurosarcoidosis. In some ways, it was almost worse knowing what was coming. I do better when catastrophe comes unannounced.

There’s nothing to do but get through it, though. Well, that and get a shitload of IV prednisone, to try and knock the disease back into submission. A week after getting 1,000 milligrams of prednisone dripped into me, I feel like I’ve turned a corner. The vertigo has eased. The ringing has stopped, and my vision has been less sporadic. My ankle, too, is less of an unmitigated disaster. I’ve been able to start rehabilitating it and am walking tentatively with a sturdy brace on it.

For the last few days, I’ve been trying to scratch my way out of the hole the disease dumped me back into. I cooked dinner for Jay and Andrew for the first time in weeks. I made my bed. I checked my email. I thought about writing. I got reacquainted with friends. I quizzed Andrew for his spelling test. I folded a load of laundry. I ventured downstairs and fed the cats. Once you lose your footing on the scaffolding of everyday life, you realize how important it is—and how much you don’t want to lose it.

This cycle of falling apart and then rebuilding is familiar to me. All of us in Chronic Town know that this is just the way it is. We have good days—or weeks or months if we’re lucky. And then, inevitably, we don’t. Sometimes there’s a reason for our relapse—a bad step of one kind or another—and sometimes there isn’t. But, suddenly, we’re back to being sick, to being at the mercy of illness. It’s like a lesson in entropy from high school physics. Things fall apart, break down, seep away.

I will keep climbing out of my latest setback until I can’t. I’m tired of having to re-climb this same stretch of incline. But would I have it any other way? Would I give up climbing back to spelling quizzes and Earl Grey tea with milk and nestling myself into the hollow beneath Jay’s neck to watch a movie with him? Would I stop stretching for the basket of laundry, for the snap of shaking a shirt before folding it, for the smell of Dove soap and boy sweat on Andrew at night?

No. Although I am tired, I will keep climbing until I can’t.

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