LIVING WITH A MYSTERY ILLNESS

EVA FISHER

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.

Early into her PhD, she noticed more unusual symptoms. The dizziness was back  

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.”

Eventually she convinced the doctors to do an MRI to look at her brain. A few hours later, they came back with the first solid result she would get: a lesion in her brain that had hemorrhaged behind her pituitary gland. But this was only the beginning of years of medical confusion, diagnoses and un-diagnoses, and a continuous life on the brink of death.  

Over the course of the next five years, Hagberg Fisher’s medical story started looking like an episode of the drama House. Doctors thought she had ovarian cancer, a brain tumour, overian cancer again, chronic fatigue syndrome, mould illness and more. Some of those suspicions turned into diagnoses, and some of those diagnoses were then reversed. She had surgery for something suspicious in her ovaries, but it turned out to be nothing. She was moments from death in an ambulance driving across the Golden Gate Bridge when her sodium levels dipped two points away from brain stem death. “I remember looking out the back windows and crossing over the bridge and thinking ‘this is going to be the last thing I’m ever going to see,’ and I was calm. That calm that people talk about, I felt it. At the time I thought I was really calm because I was tough, but now I know it was that my brain was shutting down.” She was re-diagnosed with Wolff-Parkinson-White and had heart surgery to treat it. She moved to Arizona to escape what she thought were allergies. It didn’t work. She got married, and moved back to California and a doctor who she describes as her “Doctor House” diagnosed her with mast cell activation syndrome, an immune disorder where certain cells release too many chemicals.

Everyday life is overshadowed by the prospect of sudden death (Credit: iStock/Olivia Howitt)

Today, for the first time in years, Hagberg Fisher is living without a diagnosis hanging over her. She’s on a strict plan to keep her mast cell activation in check and she says it’s working, and she feels better. But she still lives with uncertainty about her health. She’s never sure when she might be diagnosed again with a tumour, whether there’s something lurking within her waiting to finally reveal itself. But she says the uncertainty of her own life, and how long it might last, has completely changed her.

Various online quizzes plot your death date using demographic data such as race, gender and age. According to deathclock.com, for example, a 28-year-old non-smoker like me, with a BMI under 25, will die on Monday, December 26, 2044. These websites wildly overpromise in their accuracy, but scientific tools for looking at what might kill a person – and when – are improving.

Some life insurance companies, for example, try to predict lifespans of their users based on big data techniques. And researchers are searching for genetic clues to death dates. Certain genes might even help doctors predict the time of day you die. People with one genotype in a study at Harvard University died before 11am; others on average died just before 6pm.

For now, it’s mainly guesswork, based on averages – but as personalised medicine and genetic research advances, the date of your death may eventually be a fact that you must learn to live with. 

Scientists know that reflecting on death can influence our thinking in profound ways, often without us realising. Some research has shown that whenever any resource, like time left to live, is scarce, people tend to value it more. Another researcher has found that when students write about death for a period of time, they report lower rates of depression and anxiety and higher levels of self-esteem and motivation.

There’s a concept in psychology called Terror Management Theory that suggests that when humans are subconsciously presented with the concept of their own deaths, they become less tolerant and more aggressive. One of the classic studies in this theory involves judges presented with a court case in which they have to set a bond for the defendant. Judges who were not subconsciously reminded of their own death before the fake trial set an average bond of $50. Those who were reminded of their mortality set an average bond of $455.

All of this raises an intriguing possibility: if in the future, medicine allows us to know the date of our death with greater clarity (see sidebar: “The day you will die”), then it could change us in more ways than we realise.

How would it change you to know for sure the day that you will die? (Credit: Getty Images/Olivia Howitt)

Still, it’s one thing to think about death in the abstract, distant sense, and another to be faced with the possibility of your own happening suddenly today. Hagberg Fisher likens it to when a close friend or family member dies. You might know they are going to die soon, you might try to prepare for it, but when the news hits, there’s a kind of grief that you can’t really get ready for. You can’t understand what it’s like until it happens.

Living in death’s shadow for so long truly has changed her outlook on life

For Hagberg Fisher, the possibility of death hung over her for nearly a decade. No-one could tell her what the prognosis was or what was making her sick. Often they wouldn’t even say the words “cancer” or “tumour.” When she was re-diagnosed with Wolff-Parkinson-White, the risk of sudden death consumed her. She found herself frozen in yoga poses, afraid to move, lest she bring upon her own death.

There are plenty of famous quotes about living like it’s your last day. Steve Jobs once said: “I have looked in the mirror every morning and asked myself: “If today were the last day of my life, would I want to do what I am about to do today?” And whenever the answer has been “No” for too many days in a row, I know I need to change something.” These quotes might seem cheesy, but Hagberg Fisher says that living in death’s shadow for so long truly has changed her outlook on life. She is adamant about living in the moment. She rarely makes plans beyond a few weeks out.

And when she’s laughing, she says she makes sure to take a note of it. “Every time I find myself hysterically laughing I call attention to it, I am experiencing laughter and joy and this is beautiful and I am going to soak it up because I know so well its opposite. The lows and lower and the highs are higher, and the highs are really beautiful.”

This story was inspired by an episode of Rose Eveleth’s podcast Flash Forward, about how it might feel to know the date of your death. From the completely absurd to the terrifyingly likely, Flash Forward takes on a specific future scenario and tries to really think through how, why, when and if it could ever happen.

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