What almost dying taught me about living | Suleika Jaouad

Jun 19, 2019

"The hardest part of my cancer experience began once the cancer was gone," says author Suleika Jaouad. In this fierce, funny, wisdom-packed talk, she challenges us to think beyond the divide between "sick" and "well," asking: How do you begin again and find meaning after life is interrupted?

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this Ted Talk features writer Suh lekha Jawad recorded live at Ted 2019

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it was the spring of 2011 and as they like to say in commencement speeches I was getting ready to enter the real world I had recently graduated from college and moved to Paris to start my first job

my dream was to become a war correspondent but the real world that I found took me into a really different kind of conflict Zone

at 22 years old I was diagnosed with leukemia

the doctors told me and my parents Point Blank that I had about a 35% chance of long-term survival

I couldn't wrap my head around what that prognosis meant but I understood that the reality and the life I'd imagined for myself had shattered overnight I lost my job my apartment My independence and I became patient number five six to four

over the next four years of chemo a clinical trial and a bone marrow transplant the hospital became my home my bed the place I live 24/7 since it was unlikely that I'd ever get better I had to accept my new reality and I adapted I became fluent in medical he's made friends with a group of other young cancer patients

built a vast collection of neon wigs and learn to use my rolling IV pole as a skateboard

I even achieve my dream of becoming a war correspondent although not in the way I'd expected it started with a Blog reporting from the front lines of my hospital bed and it morphed into a column I wrote for the New York Times called life Interrupted but thanks but Above All Else my focus was on Surviving

and spoiler alert I did survive yeah

thanks to an army of supportive humans I'm not just still here I am cured of my cancer

so when you go through a traumatic experience like this people treat you differently they start telling you how much of an inspiration you are they say you're a warrior they call you a hero someone who's lived the mythical Heroes Journey who's endured impossible trials and against the odds Live to Tell the tale returning better and braver for what you've been through

and this definitely lines up with my experience cancer totally transformed my life I left the hospital knowing exactly who I was and what I wanted to do in the world and now every day as the sun rises I drink a big glass of celery juice and I follow this up with 90 minutes of yoga then I write down 50 things I'm grateful for I'm to ask roll of paper that I fold into an origami crane

and fan filling out my window

Are you seriously believing any of this

I don't do any of these things I hate yoga and I have no idea how to fold an origami crane the truth is that for me the hardest part of my cancer experience began once the cancer was gone

that heroic journey of the Survivor we see in movies and watch play out on Instagram it's a myth it isn't just untrue it's dangerous because it erases the very real challenges of recovery now don't get me wrong I'm incredibly grateful to be alive and I'm painfully aware that this struggle is a privilege that many don't get to experience but it's important that I tell you what this project

section of heroism and expectation of constant gratitude does to people who are trying to recover because being cured is not where the work of healing ends it's where it begins I'll never forget the day I was discharged from the hospital finally done with treatment those four years of chemo had taken a toll on my relationship with my longtime boyfriend and he

recently moved out and when I walked into my apartment it was quiet eerily so

the person I wanted to call in this moment the person who I knew would understand everything was my friend Melissa she was a fellow cancer patient but she had died three weeks earlier

as I stood there and the doorway of my apartment I wanted to cry but I was too tired to cry the adrenaline was gone it felt as if the inner scaffolding that had held me together since my diagnosis had suddenly crumbled I had spent the past 1500 days working tirelessly to achieve one goal to survive and now that I done so I realized I had

Lee no idea how to live

on paper of course I was better I didn't have leukemia the my blood counts were back to normal and the disability checks students stopped coming to the outside world I clearly didn't belong in the Kingdom of the sick anymore but in reality I never felt further from being well

all that chemo had taken a permanent physical toll on my body I wondered what kind of job can I hold when I need to not for four hours in the middle of the day when my misfiring immune system still sends me to the ER on a regular basis and then there were the invisible psychological and Prince my illness had left behind the fears of relapse the unprocessed grief

Demons of PTSD that descended upon me for days sometimes weeks

see we talked about re-entry in the context of war and incarceration but we don't talk about it as much in the context of other kinds of traumatic experiences like an illness

because no one had warned me of the challenges of re-entry I thought something must be wrong with me I felt ashamed and with great guilt I kept reminding myself of how lucky I was to be alive at all when so many people like my friend Melissa were not but on most days I woke up feeling so sad and lost I could barely breathe sometimes I even fantasized about getting sick again

and let me tell you there are so many better things to fantasize about when you're in your 20s and recently single

but I miss the hospital's ecosystem like me everyone and there was broken but out here among the living I felt like an imposter overwhelmed and unable to function I also missed the sense of clarity I'd felt that my sickest staring your mortality straight in the eye has a way of simplifying things of rerouting your focus to what really matters and when I

like I vowed that if I survived it had to be for something it had to be to live a good life and adventurous life a meaningful one but the question once I was cured became how I was 27 years old but no job no partner no structure and this time I didn't have treatment protocols or discharge instructions to help guide my way forward but what I did have was an inbox full of

of Internet messages from strangers over the years people from all over the world had read my column and they've responded with letters comments and emails it was a mix as is often the case for writers I got a lot of unsolicited advice about how to cure my cancer with things like essential oils I got some questions about my bra size but

mostly mostly I heard from people who in their own different way understood what it was that I was going through

I heard from a teenage girl in Florida who like me was coming out of chemo and wrote me a message composed largely of emojis I heard from a retired art history professor in Ohio named Howard who spent most of his life struggling with a mysterious debilitating health condition that he'd had from the time he was a young man I heard from an inmate on death row in Texas by the name of Little Joe

Q short for Gangster Quinn he'd never been sick a day in his life he does a thousand push-ups to start off each morning but he related to what I described in one column as my in cancer radiation and to the experience of being confined to a tiny fluorescent room

I know that our situations are different he wrote to me but the threat of death lurks in both of our shadows

and those lonely first weeks and months of my recovery these strangers and their words became lifelines dispatches from people of so many different backgrounds with so many different experiences all showing me the same thing you can be held hostage by the worst thing that's ever happened to you and allow it to hijack your remaining days or you can find a way forward

I knew I needed to make some kind of change I wanted to be in motion again to figure out how to unstuck myself and to get back out into the world and so I decided to go on a real journey not the bullshit cancer one or the mythical Heroes Journey that everyone thought I should be on but a real pack your bags kind of Journey

I put everything I owned into storage rented out my apartment borrowed a car and talked a very dear but somewhat smelly friend into joining me

together my dog Oscar and I embarked on a 15,000 mile road trip around the United States along the way we visited some of those strangers who'd written to me I needed their advice also to say to them thank you I went to Ohio and stayed with Howard the retired professor

when you've suffered a loss or a trauma the impulse can be the guard your heart but Howard urged me to open myself up to uncertainty to the possibilities of new love new loss Howard will never be cured of illness and as a young man he had no way of predicting how long he'd live but that didn't stop him from getting married Howard has grandkids now and takes weekly ballroom dancing lessons but

if when I visited them they'd recently celebrated their 50th anniversary in his letter to me he'd written meaning is not found in the material realm it's not in dinner Jazz cocktails or conversation meaning is what's left when everything else is Stripped Away

I went to Texas and I visited little GQ on death row he asked me what I did to pass all that time I'd spent in a hospital room when I told him I got really really good at Scrabble he said me too and explained how even though he spends most of his days in solitary confinement he and his neighboring prisoners make board games out of paper and call out their place through their meal thoughts

a testament to the incredible tenacity of the human spirit and our ability to adapt with creativity and my last stop was in Florida to see that teenage girl who sent me all those emojis her name is unique which is perfect because she's the most luminous curious person I've ever met

I asked her what she wants to do next and she said I want to go to college and travel and eat weird foods like octopus that I've never tasted before and come visit you in New York and go camping but I'm scared of bugs but I still want to go camping I was in awe of her that she could be so optimistic and so full of plans for the future given everything she'd been through but as unique showed me it is far more radical and dangerous

Juris to have hope then to live hemmed in by fear

but the most important thing I learned on that road trip is that the Divide between the thicken the well it doesn't exist the border is porous as we live longer and longer surviving illnesses and injuries that would have killed our grandparents even our parents the vast majority of us will travel back and forth between these Realms spending much of our lives somewhere between the two

these are the terms of our existence now I wish I could say that since coming home from my road trip I feel fully healed I don't but once I stopped expecting myself to return to the person I'd been pre-diagnosis once I learned to accept my body and its limitations

I actually did start to feel better and in the end I think that's the trick to stop seeing our health as binary between thick and healthy well an unwell whole and broken to stop thinking that there's some beautiful perfect state of Wellness to strive for and to quit living in a state of constant dissatisfaction until we reach it

every single one of us will have our life Interrupted whether it's by the ripcord of a diagnosis or some other kind of heartbreak or trauma that brings us to the for we need to find ways to live in the in-between Place managing whatever body and mind we currently have

sometimes all it takes is the Ingenuity of a handmade game of Scrabble or finding that stripped down kind of meaning in the love of family and a night on the ballroom dance floor or that radical dangerous hope that I'm guessing will someday lead a teenage girl terrified of bugs to go camping if you're able to do that then you've taken the real hero's journey you've achieved

what it means to actually be well which is to say alive in the messiest richest most whole sense thank you that's all I've got for more TED Talks go to ted.com

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