My head would lift a bit, I could get part of a shoulder up, but even when I groaned with effort, my spine didn’t budge. My muscles weren’t responding to my brain’s requests.
My brain itself wasn’t functioning so well either. It felt swollen, as if it were trying to push out my eyeballs. Speaking required spearing the words one by one before they scampered out of my head. Thinking hurt, so mostly I didn’t do it, retreating into a twilight zone, alive but not living.
Until a year earlier, I’d managed to live a full if constrained life in spite of my decade-long illness. I’d applied every bit of determination I could muster to build my career as a science writer, to be a good partner, to hold on to my dreams and ambitions, despite getting stuck in bed unpredictably for days or weeks. But now I was too sick to even care for myself. I had run out of medical treatments after going to the top specialists in the world. Not only that, but I was running out of money, and I’d watched fellow patients repeatedly get turned down for disability payments. I felt as though I’d fallen off the edge of the earth.
The very name of the illness that had so totally derailed my life sounded like a joke, as if it were nothing more than ordinary life in our too-fast age, the complaint of someone too lazy to keep up. The words stung my lips with insult: “chronic fatigue syndrome.”