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What almost dying taught me about living

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    It was the spring of 2011,
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    and as they like to say
    in commencement speeches,
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    I was getting ready
    to enter the real world.
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    I had recently graduated from college,
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    and moved to Paris to start my first job.
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    My dream was to become
    a war correspondent,
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    but the real world that I found
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    took me into a really different
    kind of conflict zone.
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    At 22 years old,
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    I was diagnosed with leukemia.
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    The doctors told me
    and my parents, point-blank,
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    that I had about a 35 percent chance
    of long-term survival.
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    I couldn't wrap my head around
    what that prognosis meant.
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    But I understood that the reality
    and the life I'd imagined for myself
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    had shattered.
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    Overnight, I lost my job,
    my apartment, my independence,
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    and I became patient number 5624.
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    Over the next four years
    of chemo, a clinical trial
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    and a bone marrow transplant,
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    the hospital became my home,
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    my bed, the place I lived 24/7.
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    Since it was unlikely
    that I'd ever get better,
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    I had to accept my new reality.
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    And I adapted.
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    I became fluent in medicalese,
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    made friends with a group
    of other young cancer patients,
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    built a vast collection of neon wigs
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    and learned to use
    my rolling IV pole as a skateboard.
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    I even achieved my dream
    of becoming a war correspondent,
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    although not in the way I'd expected.
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    It started with a blog,
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    reporting from the front lines
    of my hospital bed,
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    and it morphed into a column
    I wrote for the New York Times,
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    called "Life, Interrupted."
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    But --
    (Applause)
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    Thank you.
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    (Applause)
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    But above all else,
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    my focus was on surviving.
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    And -- spoiler alert --
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    (Laughter)
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    I did survive, yeah.
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    (Applause)
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    Thanks to an army of supportive humans,
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    I'm not just still here,
    I am cured of my cancer.
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    (Applause)
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    Thank you.
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    (Applause)
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    So, when you go through
    a traumatic experience like this,
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    people treat you differently.
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    They start telling you
    how much of an inspiration you are.
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    They say you're a warrior.
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    They call you a hero,
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    someone who's lived
    the mythical hero's journey,
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    who's endured impossible trials
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    and, against the odds,
    lived to tell the tale,
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    returning better and braver
    for what you're been through.
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    And this definitely lines up
    with my experience.
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    Cancer totally transformed my life.
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    I left the hospital knowing
    exactly who I was
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    and what I wanted to do in the world.
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    And now, every day as the sun rises,
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    I drink a big glass of celery juice,
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    and I follow this up
    with 90 minutes of yoga.
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    Then, I write down 50 things
    I'm grateful for onto a scroll of paper
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    that I fold into an origami crane
    and send sailing out my window.
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    (Laughter)
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    Are you seriously believing any of this?
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    (Laughter)
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    I don't do any of these things.
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    (Laughter)
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    I hate yoga, and I have no idea
    how to fold an origami crane.
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    The truth is that for me,
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    the hardest part of my cancer experience
    began once the cancer was gone.
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    That heroic journey
    of the survivor we see in movies
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    and watch play out on Instagram --
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    it's a myth.
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    It isn't just untrue, it's dangerous,
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    because it erases the very real
    challenges of recovery.
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    Now, don't get me wrong --
    I am incredibly grateful to be alive,
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    and I am painfully aware
    that this struggle is a privilege
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    that many don't get to experience.
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    But it's important that I tell you
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    what this projection of heroism
    and expectation of constant gratitude
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    does to people who are trying to recover.
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    Because being cured is not
    where the work of healing ends.
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    It's where it begins.
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    I'll never forget the day
    I was discharged from the hospital,
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    finally done with treatment.
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    Those four years of chemo
    had taken a toll on my relationship
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    with my longtime boyfriend,
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    and he'd recently moved out.
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    And when I walked
    into my apartment, it was quiet.
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    Eerily so.
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    The person I wanted to call
    in this moment,
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    the person who I knew
    would understand everything,
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    was my friend Melissa.
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    She was a fellow cancer patient,
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    but she had died three weeks earlier.
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    As I stood there in the doorway
    of my apartment,
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    I wanted to cry.
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    But I was too tired to cry.
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    The adrenaline was gone.
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    I had felt as if the inner scaffolding
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    that had held me together
    since my diagnosis
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    had suddenly crumbled.
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    I had spent the past 1,500 days
    working tirelessly to achieve one goal:
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    to survive.
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    And now that I'd done so,
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    I realized I had absolutely
    no idea how to live.
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    On paper, of course, I was better:
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    I didn't have leukemia,
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    my blood counts were back no normal,
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    and the disability checks
    soon stopped coming.
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    To the outside world,
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    I clearly didn't belong in the kingdom
    of the sick anymore.
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    But in reality, I never felt
    further from being well.
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    All that chemo had taken
    a permanent physical toll on my body.
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    I wondered, "What kind of job can I hold
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    when I need to nap for four hours
    in the middle of the day?
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    When my misfiring immune system
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    still sends me to the ER
    on a regular basis?"
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    And then, there were the invisible,
    psychological imprints
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    my illness had left behind:
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    the fears of relapse,
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    the unprocessed grief,
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    the demons of PTSD that descended upon me
    for days, sometimes weeks.
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    See, we talk about reentry
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    in the context of war and incarceration.
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    But we don't talk about it as much
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    in the context of other kinds
    of traumatic experiences, like an illness.
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    Because no one had warned me
    of the challenges of reentry,
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    I thought something must be wrong with me.
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    I felt ashamed,
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    and with great guilt,
    I kept reminding myself
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    of how lucky I was to be alive at all,
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    when so many people
    like my friend Melissa were not.
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    But on most days, I woke up
    feeling so sad and lost,
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    I could barely breathe.
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    Sometimes, I even fantasized
    about getting sick again.
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    And let me tell you,
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    there are so many better things
    to fantasize about
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    when you're in your twenties
    and recently single.
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    (Laughter)
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    But I missed the hospital's ecosystem.
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    Like me, everyone in there was broken.
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    But out here, among the living,
    I felt like an impostor,
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    overwhelmed and unable to function.
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    I also missed the sense of clarity
    I'd felt at my sickest.
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    Staring your mortality straight in the eye
    has a way of simplifying things,
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    of rerouting your focus
    to what really matters.
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    And when I was sick,
    I vowed that if I survived,
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    it had to be for something.
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    It had to be to live a good life,
    an adventurous life,
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    a meaningful one.
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    But the question, once I was cured,
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    became: How?
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    I was 27 years old
    with no job, no partner, no structure.
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    And this time, I didn't have treatment
    protocols or discharge instructions
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    to help guide my way forward.
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    But what I did have was an in-box
    full of internet messages
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    from strangers.
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    Over the years,
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    people from all over the world
    had read my column,
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    and they'd responded with letters,
    comments and emails.
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    It was a mix, as is often
    the case, for writers.
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    I got a lot of unsolicited advice
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    about how to cure my cancer
    with things like essential oils.
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    I got some questions about my bra size.
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    But mostly --
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    (Laughter)
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    mostly, I heard from people who,
    in their own different way,
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    understood what it was
    that I was going through.
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    I heard from a teenage girl in Florida
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    who, like me, was coming out of chemo
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    and wrote me a message
    composed largely of emojis.
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    I heard from a retired art history
    professor in Ohio named Howard,
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    who'd spent most of his life
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    struggling with a mysterious,
    debilitating health condition
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    that he'd had from the time
    he was a young man.
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    I heard from an inmate
    on death row in Texas
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    by the name of Little GQ --
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    short for "Gangster Quinn."
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    He'd never been sick a day in his life.
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    He does 1,000 push-ups
    to start off each morning.
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    But he related to what
    I described in one column
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    as my "incanceration,"
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    and to the experience of being confined
    to a tiny fluorescent room.
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    "I know that our situations
    are different," he wrote to me,
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    "But the threat of death
    lurks in both of our shadows."
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    In those lonely first weeks
    and months of my recovery,
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    these strangers and their words
    became lifelines,
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    dispatches from people
    of so many different backgrounds,
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    with so many different experiences,
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    all showing me the same thing:
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    you can be held hostage
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    by the worst thing
    that's ever happened to you
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    and allow it to hijack
    your remaining days,
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    or you can find a way forward.
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    I knew I needed to make
    some kind of change.
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    I wanted to be in motion again
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    to figure out how to unstuck myself
    and to get back out into the world.
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    And so I decided to go on
    a real journey --
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    not the bullshit cancer one
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    or the mythical hero's journey
    that everyone thought I should be on,
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    but a real, pack-your-bags
    kind of journey.
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    I put everything I owned into storage,
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    rented out my apartment, borrowed a car
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    and talked a very a dear
    but somewhat smelly friend
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    into joining me.
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    (Laughter)
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    Together, my dog Oscar and I
    embarked on a 15,000-mile road trip
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    around the United States.
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    Along the way, we visited some
    of those strangers who'd written to me.
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    I needed their advice,
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    also to say to them, thank you.
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    I went to Ohio and stayed with Howard,
    the retired professor.
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    When you've suffered a loss or a trauma,
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    the impulse can be to guard your heart.
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    But Howard urged me
    to open myself up to uncertainty,
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    to the possibilities
    of new love, new loss.
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    Howard will never be cured of illness.
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    And as a young man, he had no way
    of predicting how long he'd live.
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    But that didn't stop him
    from getting married.
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    Howard has grandkids now,
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    and takes weekly ballroom dancing
    lessons with his wife.
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    When I visited them,
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    they’d recently celebrated
    their 50th anniversary.
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    In his letter to me, he'd written,
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    "Meaning is not found
    in the material realm;
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    it's not in dinner, jazz,
    cocktails or conversation.
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    Meaning is what's left
    when everything else is stripped away."
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    I went to Texas, and I visited
    Little GQ on death row.
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    He asked me what I did
    to pass all that time
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    I'd spent in a hospital room.
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    When I told him that I got
    really, really good at Scrabble,
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    he said, "Me, too!" and explained how,
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    even though he spends most of his days
    in solitary confinement,
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    he and his neighboring prisoners
    make board games out of paper
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    and call out their plays
    through their meal slots --
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    a testament to the incredible tenacity
    of the human spirit
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    and our ability to adapt with creativity.
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    And my last stop was in Florida,
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    to see that teenage girl
    who'd sent me all those emojis.
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    Her name is Unique, which is perfect,
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    because she's the most luminous,
    curious person I've ever met.
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    I asked her what she wants
    to do next and she said,
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    "I want to go to college and travel
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    and eat weird foods like octopus
    that I've never tasted before
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    and come visit you in New York
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    and go camping, but I'm scared of bugs,
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    but I still want to go camping."
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    I was in awe of her,
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    that she could be so optimistic
    and so full of plans for the future,
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    given everything she'd been through.
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    But as Unique showed me,
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    it is far more radical
    and dangerous to have hope
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    than to live hemmed in by fear.
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    But the most important thing
    I learned on that road trip
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    is that the divide between
    the sick and the well --
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    it doesn't exist.
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    The border is porous.
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    As we live longer and longer,
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    surviving illnesses and injuries
    that would have killed our grandparents,
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    even our parents,
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    the vast majority of us will travel
    back and forth between these realms,
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    spending much of our lives
    somewhere between the two.
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    These are the terms of our existence.
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    Now, I wish I could say
    that since coming home from my road trip,
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    I feel fully healed.
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    I don't.
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    But once I stopped expecting myself
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    to return to the person
    I'd been pre-diagnosis,
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    once I learned to accept my body
    and its limitations,
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    I actually did start to feel better.
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    And in the end, I think that's the trick:
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    to stop seeing our health as binary,
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    between sick and healthy,
  • 15:41 - 15:42
    well and unwell,
  • 15:42 - 15:44
    whole and broken;
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    to stop thinking that there's some
    beautiful, perfect state of wellness
  • 15:48 - 15:50
    to strive for;
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    and to quit living in a state
    of constant dissatisfaction
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    until we reach it.
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    Every single one of us
    will have our life interrupted,
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    whether it's by the rip cord
    of a diagnosis
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    or some other kind of heartbreak
    or trauma that brings us to the floor.
  • 16:10 - 16:16
    We need to find ways to live
    in the in-between place,
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    managing whatever body
    and mind we currently have.
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    Sometimes, all it takes is the ingenuity
    of a handmade game of Scrabble
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    or finding that stripped-down
    kind of meaning in the love of family
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    and a night on the ballroom dance floor
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    or that radical, dangerous hope
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    that I'm guessing will someday
    lead a teenage girl terrified of bugs
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    to go camping.
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    If you're able to do that,
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    then you've taken the real hero's journey.
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    You've achieved what it means
    to actually be well,
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    which is to say, alive in the messiest,
    richest, most whole sense.
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    Thank you, that's all I've got.
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    (Applause)
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    Thank you.
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    (Applause)
Title:
What almost dying taught me about living
Speaker:
Suleika Jaouad
Description:

more » « less
Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
17:23

English subtitles

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