collage

On August 28, I walked into the clinic. I took off my glasses—blind now—and lay on the table. The clinician strapped a molded plastic mesh mask to my face. She attached it to the table.

For the next 35 minutes, I lay completely still, pinned down. I closed my eyes. I could hear the mechanical arm of the CyberKnife machine darting and turning in the space above, below, aside, and over my head and face. Three-quarters of the way through I began to feel the radiation it was zapping into me: invisible, yet radiating, just like its name.

By the time the procedure was done I felt blanched and shaken. Now it was time to wait.

Seven months earlier, in the weeks following a car accident and concussion, I felt the first twinges of what I later found out was trigeminal neuralgia, tic doloureux. “Agonizing tic” is one way to put it. When my facial nerve misfired, it felt like someone snuck up behind me and started stabbing me in the ear with an electric knife. Every episode was terrifying, painful. It reduced me from a strong, healthy young woman with a high pain threshold to a quaking pile of mush, clutching at whatever I could hold onto and riding it out in silent overwhelm. Then came the medicine—blessed stuff, but cursed with its own set of side effects: exhaustion, confusion, a sudden inability to choose words or translate my thought into cogent sentences. I couldn’t work or leave the house except for a slow daily walk. I sold my company to my business partner, slashed my time in front of the computer, changed everything I could get my hands on in a bid to make things better. Everything in my life was suddenly pinned down, unable to move forward.

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I kind of thought that letting someone shoot ridiculously high amounts of radiation to a tiny 6mm spot near my brain stem would be the end of it, but then I was pinned down by the need to see how the procedure worked. Not yet, they told me, as I begged them to let me put down the pills. When they finally let me start tapering them down a month later, they told me I’d have to respect the power of the medication before I found out whether the radiation worked or not. (It interacts with other drugs, precludes eating certain foods, and twists fetuses into deformed things. I thought I had the proper respect.) They told me I’d have to taper down slowly or risk a seizure or other problems. I bucked and cried but I was pinned down. I did what I was told.

This morning was the start of my first day without pills in ten months.

My task this weekend is to finish a critical phase of a writing project that’s been occupying my brain for some time. Alone at my computer, I’ll snip off loose threads. I’ll move things from one place to another, weighing the balance of each word. I’m pinning down the boundaries of the project, defining the edges of what will be a book one day. These first days and weeks without medicine will feel strange—I don’t know what to expect. What will I do if the pain comes back? What if it didn’t work? Will I ever feel normal again? What’s normal? What’s I?

I don’t know the answer but I know that right as I prepare the final steps of pinning down my creative vision, I’ve been set loose for the first time in what seems like forever. Now to listen, and to watch.

 

Photo via merely the moon