Siri Hustvedt: How I tamed my migraines

Empathy: Siri Hustvedt feels other people’s pain as her own
Liz Hoggard10 April 2012

Blonde and Amazonian, Siri Hustvedt, 55, looks the picture of health, which is ironic when her life has been plagued by migraines, fits and seizures.

Married to one of America's greatest living novelists, Paul Auster (author of The Music of Chance and The New York Trilogy), for 29 years, Hustvedt has published four novels of her own, been an art critic and written poetry. She speaks in elegant sentences punctuated by a deep laugh. "It's not as if I walk around feeling like some frail, sickly human being," she tells me. "At the same time I have nervous system issues that are compromising to some degree."

In her memoir, The Shaking Woman, she turns detective to track down who the "shaking woman" is. Migraines had been Hustvedt's constant companion since childhood, along with visual spots, lights and hallucinations.

More unusually, she has mirror-touch synesthesia: a form of extreme empathy that means she experiences other people's pain and sorrow as her own. In 2006 she spoke at a memorial event for her father, who had died two years previously, before suffering a violent seizure. Despite flapping arms and shaking legs, Hustvedt finished her speech. Was this "hysteria", delayed grief or a coincidental attack of epilepsy? While she was doing a talk in Florida, her husband felt so desperate at witnessing one seizure "he wanted to carry me off the stage".

To take back control, she researched The Shaking Woman. She visited a psychoanalyst, a neurologist and had an MRI scan, which came back normal.
She is fascinated by the relationship between brain and mind and the seizures often occur when she is extremely happy — or creative. During her honeymoon in 1982, aged 27, Hustvedt had a seizure in an art gallery: "My left arm suddenly shot up into the air, and I was thrown back against the wall." Later, after walking the streets of Paris feeling crazily happy, she experienced a "horrifying" migraine that lasted for a year in which she was briefly hospitalised and prescribed Thorazine, a powerful anti-psychotic.

After eight days of "stuporous sedation", she checked herself out and spent nearly a year in bed. The guilt was terrible. "I did feel bad for Paul because that's not the person he married. It took me a long time to give up that idea of it's psychosomatic, I'm to blame'."

Hustvedt's Scandinavian childhood taught her to "tough it out". At 23 she moved to New York to start her PhD at Columbia. She fell in love with the city and met Auster in 1981. She has learned to accept her "iffy neurological system" and meditate using a biofeedback machine. "The more tense you are the louder and faster the machine beeps. As you relax the sounds grow slower until they stop." She's found a beta-blocker which inhibits the trigger for seizures.

Today she thinks of her migraines as "a part of me, not some plague". She still drinks coffee and wine and cycles. "When I feel a migraine coming on, I go to bed and do my relaxation exercises, which keep the worst pain and nausea at bay. I do not welcome my headaches but they may even serve a necessary regulatory function, by forcing me to lie low, a kind of penance for those other days of flying high." She says the life of a writer is ideal for someone with her condition. "There's a certain cocooning aspect about sitting at one's desk for seven hours a day. You are protected from the bombardment of stimuli in the outside world."

She and Auster, who live in Brooklyn, are going through a new phase now that their daughter Sophie, 23, has left home. "This is a period of liberation and fruition for me. The message of the book is: you take what you get. Many people live with pain, from asthma to allergies. My sense is that how one views an illness, and the meaning one gives to it, defines how you live with it."
The Shaking Woman or A History of My Nerves, published by Sceptre, £12.99.

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