Playwright and Memoirist Sarah Ruhl on Writing as a Form of Healing and Connection
Two days after I had a dramatic delivery of twins following a high-risk pregnancy, a lactation consultant came by my hospital room. She started to teach me how to feed two babies at once, using the football hold, and then she looked at me curiously.
“Your eye looks droopy,” she said. “Yes, my eyes are a little droopy,” I joked. “I’m Irish.” Most of my ancestors, after one or two gin and tonics, looked as though they were about to fall asleep, so crinkled and heavy did their crescent eyes become. “That’s not what I mean,” she said, kind but firm. “Go look in the mirror.”
I got up to look in the mirror in the bathroom. Indeed, the left half of my face had fallen down. Eyebrow, fallen; eyelid, fallen; lip fallen, frozen, immovable. A stroke? I am astonished. My face hadn’t felt any different before I looked in the mirror. Before looking in the mirror, I was the same person. After looking in the mirror, entirely different.
I tried to move my face. Impossible. Puppet face, strings cut. I called my husband, who is always preternaturally calm, and I tell him I can’t move the left side of my face. He told me to have the hospital call a neurologist immediately. And he said, “I’ll be over in 10 minutes.”
I was worried I’d had a stroke. The neurologist diagnosed Bell’s palsy, which is the paralysis of the seventh cranial nerve. No one completely knows how you get it, or how (and if) it goes away, though it can be associated with pregnancy, viruses, and Lyme disease. For the vast majority of patients, the facial paralysis is completely gone in three months. In my case, it stayed. And stayed. And stayed.
And so, 10 years after diagnosis, I hunkered down to write a book about the loss of a smile, the hope for a smile, and the acceptance of a new face. Writing the book helped me make sense of my own story, when my body stopped obeying my heart. The act of writing was incredibly healing—it put my illness, quite literally, in the past tense, even though my biological healing was incomplete.
After Smile’s publication, I received all kinds of letters and messages from readers who identified with my story. One woman wrote to me that she got Bell’s palsy after giving birth; she said the psychological pain of Bell’s was worse than the pain of childbirth. Another woman wrote that she’d been an actress and stopped acting altogether after her face developed asymmetry. All these responses were comforting but didn't help solve the conundrum of why Bell's had struck. But then, out of the blue, a retired infectious disease doctor who'd read an excerpt from my book got in touch with me. Over the phone, he diagnosed with me with late-stage neurological Lyme disease.
I was shocked. I told him that I’d had multiple Western blot Lyme tests in the past that were negative. If what he was saying was true, how could the tests not have revealed that? He said that certain kinds of Lyme can go undetected in basic blood work. Perhaps that's what had happened in my case.
I flashed on a memory. When I was three months pregnant with Hope and William, my husband Tony and I had gone for the weekend to a friend’s cabin in Long Island. The cabin was surrounded by woods. Within a day of being there, Tony got a tick bite and a classic rash—a bull’s-eye—on his leg. He sent a photo of the rash to his doctor and took antibiotics right away. I never had a rash or a tick bite that I could see, so I tucked the incident away in the back of my mind for years.
When this infectious disease doctor called me out of the blue diagnosing me with neurological Lyme disease, I was disturbed. I’d certainly had many of the symptoms; unrecovered facial palsy, headaches, fatigue, intermittent tremors, parasites, post-partum depression, and unexplained peripheral neuropathy. So, 12 years after the fact, I did more comprehensive (and I might add, ridiculously expensive) blood work. The results were irritatingly ambiguous; the markers showed potential exposure to Lyme, without a conclusive diagnosis.
I went to see another infectious disease doctor in New York, who patiently explained the tests to me and put me on a course of doxycycline for a month just in case, telling me that the facial nerve might be too damaged at this point to have any improvement, but that it was important to treat because of other adverse neurological effects that might come along. He told me to watch for what’s called a Herxheimer reaction to Lyme die-off; headaches, chills, fatigue, aches, brain fog, neuropathy. I had them all. This doctor (wonderfully old-school, the kind who calls you after a long day’s work on the phone with your test results) ordered a different set of blood work for me. These new tests were covered by insurance and looked for specific Lyme antibodies. The results were strongly positive.
Did I have to write a book to get a diagnosis, 12 years after onset, of untreated Lyme disease? Did I have to write a book to connect with other people who have unrecovered facial paralysis rather than retreating into a silent corner? The answer to both questions appears to be yes.
I’m now three weeks into treatment, and it’s too early to say whether I will transform, after taking a long course of antibiotics, into some highly energetic 48-year-old goddess. Right now I still feel as though I’m walking through a fog. Medicine is an art as well as a science, therefore can be elusive, complicated, and the start of a long road requiring patience and fortitude. I suppose my life making art should have taught me that already.
When I finished writing Smile, my daughter, Anna, said this to me: “I’ve always thought of your face as a beautiful house. One day, a wall suddenly fell down, and you spent all this time trying to rebuild it, brick by brick. And you couldn’t quite. When you looked at your face, all you saw was this broken wall. But when we looked at your face, all we saw was our house.”
I’m making my way back into my face as house, practicing smiling, practicing joy.
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