How
it feels to live with the possibility of “sudden death”
Writer
Eva Hagberg Fisher spent years living with the possibility that she could die
at any moment – but no-one could tell her for sure, because her doctors
struggled to diagnose her illness. Rose Eveleth asked her what it was like, and
explores how contemplating death can change our thinking.
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 the idea that her death could
come at any moment.
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.”
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.
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.
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.
Studies
show that imagining your own demise can even change your biases and politics. 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 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.
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.
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.”
The article talks about a girl by the name Hagberg Fisher who
was suffering unknown symptoms and living in fear of death for over a decade.
The author of the article seemed biased against the doctors and towards the
protagonist in the article, seeing as they touched on how much the doctors
couldn’t grasp the symptoms and by mentioning that regardless of the numerous
prescriptions and surgeries, Hagsberg didn’t seem to be getting better. I think
that the American government should contribute to the education of students
especially in the field of medication so that it can protect more of its
citizens and reduce more deaths than it is already. I also think that the
article teaches us a good lesson about life. It’s easy to forget how much of a
gift living a healthy life is, but I think through this article I was able to
reflect and be more thankful for such blessings.
“How
it feels to live with the possibility of “sudden death””. June 7, 2016. BBC.
June 7, 2016. < http://www.bbc.com/future/story/20160607-how-it-feels-to-live-with-the-possibility-of-sudden-death>
