How it Feels to Live With ‘Sudden Death’

June 9, 2016

Today, Eva Hagberg Fisher is a PhD student, architecture critic and writer based in Berkeley. She just sold her second book, a memoir about friendship. And for the last eight years, Hagberg Fisher has lived with continual uncertainty over how long she might live.

In 2008, Hagberg Fisher was living in New York City, and slowly started to feel a little weird. She was dizzy a lot of the time, and thirsty almost always. One day in January she woke up and walked into her kitchen, where she felt “like the floor was rising up to meet me, or like I was heading down to meet the floor”, she wrote in an e-book about her medical struggles.

“Like there was a rolling wave that began on the floor and then rose up through my body, bringing with it the acidic taste of boiled metal, the treble sound of high violin strings.” A doctor at NYU sent her for an MRI. Perhaps it was a small tumour, wrapping around her ear, throwing off her balance. She went to rehab, undergoing vestibular therapy twice a week. It didn’t do much.

She thought perhaps it was the stress of living in such an exhausting city, so in 2009 she moved to Portland to relax. “I basically rode my bike and ate a lot of Oreos and kind of had this palette-cleansing year,” she told me. While in Portland, she applied for graduate school and in 2010 moved to Berkeley to start a PhD program in architectural history.

But early into her PhD and her time in Berkeley, she noticed more unusual symptoms. The dizziness was back. She was anxious all the time. She found herself consumed with obsessive thoughts. A doctor in San Francisco prescribed her an anti-anxiety medication. Anxiety was common among graduate students, they said, it was likely responsible for her dizziness too. The medication numbed her but it didn’t really stop the problems.

“It made my symptoms kind of easier to accept, but it didn’t make them go away.” Slowly, everything started getting harder and harder to do. She woke up sweating, and struggled to focus on anything. She had sudden mood swings and tantrums, throwing glasses around her kitchen and forgetting her students’ names. “Things just stopped making sense physically and they also stopped making sense mentally,” she says.

And then she fainted. In the hallway of her yoga studio, mid-conversation, she blacked out and fell to the floor. At the student health services centre, a doctor gave her an EKG, and diagnosed her with something called Wolff-Parkinson-White syndrome, a heart condition in which the electrical signaling in the heart malfunctions. One of the risks of Wolff-Parkinson-White syndrome, the doctors told her, is “sudden death”. The next day Hagberg Fisher woke up and couldn’t walk. “Nothing made sense, I was really confused.”

At the emergency room, where the doctors were convinced she was simply dehydrated, a nurse lobbied to have her admitted. She spent the next six days in the hospital, while doctors struggled to figure out what was causing her array of symptoms. They ruled out diabetes, syphilis, AIDS, liver cancer, and Lyme disease. They un-diagnosed her with Wolff-Parkinson-White. One resident thought it was depression. Another thought it might be an aggressive tumour.

Oddly, the idea of a tumour that would kill her quickly was almost a relief. “I had been thinking that I just need to try harder and breathe better and get better at doing yoga and all of a sudden they’re talking about a carcinoid tumour, words that I had never heard before, and my first thought was validation, because I had been trying to get better on my own and I couldn’t.”

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