ABOUT THE SPEAKER
Suleika Jaouad - Writer, teacher, activist
Writer Suleika Jaouad is changing the conversation about what it means to thrive in the wake of illness and life's unexpected interruptions.

Why you should listen

When Suleika Jaouad finally walked out of the hospital -- after countless rounds of chemo, a lifesaving clinical trial and a bone marrow transplant -- she was, according to the doctors, "cured." But as she would soon learn, a cure is not where the work of healing ends; it's where it begins. She set out on a 100-day, 15,000-mile road trip across the country to meet some of the people who had written to her during her time in the hospital. Her extraordinary journey resulted in her debut memoir, Between Two Kingdoms.

Jaouad is an Emmy-winning journalist, author, teacher and activist. Her career aspirations as a foreign correspondent were cut short when, at age 22, she was diagnosed with leukemia. She began writing the acclaimed New York Times column and video series "Life, Interrupted" from the front lines of her hospital bed and has since become a fierce advocate for those living with illness and other forms of adversity.

Jaouad served on Barack Obama's Presidential Cancer Panel, and her advocacy work, public speaking and reporting have brought her everywhere from the United Nations and Capitol Hill to a maximum security prison and a two-room schoolhouse in rural Montana.

More profile about the speaker
Suleika Jaouad | Speaker | TED.com
TED2019

Suleika Jaouad: What almost dying taught me about living

Filmed:
2,529,592 views

"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?
- Writer, teacher, activist
Writer Suleika Jaouad is changing the conversation about what it means to thrive in the wake of illness and life's unexpected interruptions. Full bio

Double-click the English transcript below to play the video.

00:12
It was the spring of 2011,
0
690
2976
00:15
and as they like to say
in commencement speeches,
1
3690
2802
00:18
I was getting ready
to enter the real world.
2
6516
3564
00:22
I had recently graduated from college
3
10727
2632
00:25
and moved to Paris to start my first job.
4
13383
2740
00:28
My dream was to become
a war correspondent,
5
16990
3872
00:32
but the real world that I found
6
20886
2157
00:35
took me into a really different
kind of conflict zone.
7
23067
4280
00:40
At 22 years old,
8
28974
2024
00:43
I was diagnosed with leukemia.
9
31022
2903
00:46
The doctors told me
and my parents, point-blank,
10
34927
3285
00:50
that I had about a 35 percent chance
of long-term survival.
11
38236
4465
00:56
I couldn't wrap my head around
what that prognosis meant.
12
44006
4817
01:00
But I understood that the reality
and the life I'd imagined for myself
13
48847
5103
01:05
had shattered.
14
53974
1150
01:07
Overnight, I lost my job,
my apartment, my independence,
15
55744
5006
01:12
and I became patient number 5624.
16
60774
3772
01:18
Over the next four years
of chemo, a clinical trial
17
66680
3549
01:22
and a bone marrow transplant,
18
70253
1880
01:24
the hospital became my home,
19
72157
2311
01:26
my bed, the place I lived 24/7.
20
74492
2995
01:30
Since it was unlikely
that I'd ever get better,
21
78111
3749
01:33
I had to accept my new reality.
22
81884
2927
01:37
And I adapted.
23
85276
2351
01:40
I became fluent in medicalese,
24
88196
3595
01:43
made friends with a group
of other young cancer patients,
25
91815
4698
01:48
built a vast collection of neon wigs
26
96537
4334
01:52
and learned to use
my rolling IV pole as a skateboard.
27
100895
5807
01:59
I even achieved my dream
of becoming a war correspondent,
28
107943
3079
02:03
although not in the way I'd expected.
29
111046
2667
02:06
It started with a blog,
30
114220
1754
02:07
reporting from the front lines
of my hospital bed,
31
115998
2337
02:10
and it morphed into a column
I wrote for the New York Times,
32
118359
3826
02:14
called "Life, Interrupted."
33
122209
1733
02:16
But --
(Applause)
34
124784
1151
02:17
Thank you.
35
125959
1152
02:19
(Applause)
36
127135
2060
02:21
But above all else,
37
129620
2270
02:23
my focus was on surviving.
38
131914
3158
02:27
And -- spoiler alert --
39
135863
2627
02:30
(Laughter)
40
138514
2095
02:32
I did survive, yeah.
41
140633
2128
02:34
(Applause)
42
142785
5030
02:39
Thanks to an army of supportive humans,
43
147839
2865
02:42
I'm not just still here,
I am cured of my cancer.
44
150728
3809
02:46
(Applause)
45
154921
1161
02:48
Thank you.
46
156106
1152
02:49
(Applause)
47
157282
2064
02:51
So, when you go through
a traumatic experience like this,
48
159370
4133
02:55
people treat you differently.
49
163527
1647
02:57
They start telling you
how much of an inspiration you are.
50
165614
4070
03:02
They say you're a warrior.
51
170136
2386
03:04
They call you a hero,
52
172546
1944
03:06
someone who's lived
the mythical hero's journey,
53
174514
2952
03:09
who's endured impossible trials
54
177490
2085
03:11
and, against the odds,
lived to tell the tale,
55
179599
3327
03:14
returning better and braver
for what you're been through.
56
182950
3867
03:19
And this definitely lines up
with my experience.
57
187839
4606
03:24
Cancer totally transformed my life.
58
192469
2254
03:26
I left the hospital knowing
exactly who I was
59
194747
2968
03:29
and what I wanted to do in the world.
60
197739
2063
03:31
And now, every day as the sun rises,
61
199826
2689
03:34
I drink a big glass of celery juice,
62
202539
2578
03:37
and I follow this up
with 90 minutes of yoga.
63
205141
2825
03:40
Then, I write down 50 things
I'm grateful for onto a scroll of paper
64
208649
5896
03:46
that I fold into an origami crane
and send sailing out my window.
65
214569
4912
03:51
(Laughter)
66
219505
1667
03:53
Are you seriously believing any of this?
67
221196
3131
03:56
(Laughter)
68
224351
2082
03:58
I don't do any of these things.
69
226457
1823
04:00
(Laughter)
70
228304
1107
04:01
I hate yoga, and I have no idea
how to fold an origami crane.
71
229435
4201
04:07
The truth is that for me,
72
235355
2082
04:09
the hardest part of my cancer experience
began once the cancer was gone.
73
237461
4876
04:15
That heroic journey
of the survivor we see in movies
74
243538
3761
04:19
and watch play out on Instagram --
75
247323
2310
04:21
it's a myth.
76
249657
1158
04:22
It isn't just untrue, it's dangerous,
77
250839
2571
04:25
because it erases the very real
challenges of recovery.
78
253434
3395
04:29
Now, don't get me wrong --
I am incredibly grateful to be alive,
79
257529
5612
04:35
and I am painfully aware
that this struggle is a privilege
80
263165
3502
04:38
that many don't get to experience.
81
266691
2080
04:41
But it's important that I tell you
82
269284
2506
04:43
what this projection of heroism
and expectation of constant gratitude
83
271814
5271
04:49
does to people who are trying to recover.
84
277109
2357
04:51
Because being cured is not
where the work of healing ends.
85
279886
4350
04:56
It's where it begins.
86
284784
1848
04:59
I'll never forget the day
I was discharged from the hospital,
87
287704
4191
05:03
finally done with treatment.
88
291919
2190
05:06
Those four years of chemo
had taken a toll on my relationship
89
294997
5813
05:12
with my longtime boyfriend,
90
300834
1886
05:14
and he'd recently moved out.
91
302744
2058
05:17
And when I walked
into my apartment, it was quiet.
92
305498
3880
05:21
Eerily so.
93
309831
1150
05:24
The person I wanted to call
in this moment,
94
312192
2695
05:26
the person who I knew
would understand everything,
95
314911
3499
05:30
was my friend Melissa.
96
318434
1666
05:32
She was a fellow cancer patient,
97
320498
2052
05:34
but she had died three weeks earlier.
98
322574
2624
05:38
As I stood there in the doorway
of my apartment,
99
326515
2976
05:41
I wanted to cry.
100
329515
1881
05:43
But I was too tired to cry.
101
331420
2882
05:46
The adrenaline was gone.
102
334728
1849
05:48
I had felt as if the inner scaffolding
103
336601
2770
05:51
that had held me together
since my diagnosis
104
339395
2437
05:53
had suddenly crumbled.
105
341856
1641
05:56
I had spent the past 1,500 days
working tirelessly to achieve one goal:
106
344173
6909
06:03
to survive.
107
351106
1381
06:04
And now that I'd done so,
108
352511
1905
06:06
I realized I had absolutely
no idea how to live.
109
354440
5631
06:13
On paper, of course, I was better:
110
361996
2040
06:16
I didn't have leukemia,
111
364060
2103
06:18
my blood counts were back no normal,
112
366187
1853
06:20
and the disability checks
soon stopped coming.
113
368064
2777
06:23
To the outside world,
114
371244
1238
06:24
I clearly didn't belong in the kingdom
of the sick anymore.
115
372506
4500
06:29
But in reality, I never felt
further from being well.
116
377871
3952
06:34
All that chemo had taken
a permanent physical toll on my body.
117
382688
4714
06:39
I wondered, "What kind of job can I hold
118
387949
3120
06:43
when I need to nap for four hours
in the middle of the day?
119
391093
4063
06:47
When my misfiring immune system
120
395180
2461
06:49
still sends me to the ER
on a regular basis?"
121
397665
3348
06:53
And then there were the invisible,
psychological imprints
122
401657
3834
06:57
my illness had left behind:
123
405515
2150
06:59
the fears of relapse,
124
407689
2643
07:02
the unprocessed grief,
125
410356
1902
07:04
the demons of PTSD that descended upon me
for days, sometimes weeks.
126
412282
5640
07:10
See, we talk about reentry
127
418921
2254
07:13
in the context of war and incarceration.
128
421199
3325
07:16
But we don't talk about it as much
129
424548
1894
07:18
in the context of other kinds
of traumatic experiences, like an illness.
130
426466
4301
07:23
Because no one had warned me
of the challenges of reentry,
131
431911
3904
07:27
I thought something must be wrong with me.
132
435839
2777
07:30
I felt ashamed,
133
438640
2175
07:32
and with great guilt,
I kept reminding myself
134
440839
3286
07:36
of how lucky I was to be alive at all,
135
444149
2291
07:38
when so many people
like my friend Melissa were not.
136
446464
2911
07:42
But on most days, I woke up
feeling so sad and lost,
137
450387
3595
07:46
I could barely breathe.
138
454006
1719
07:48
Sometimes, I even fantasized
about getting sick again.
139
456204
4804
07:53
And let me tell you,
140
461683
1152
07:54
there are so many better things
to fantasize about
141
462859
3904
07:58
when you're in your twenties
and recently single.
142
466787
2722
08:01
(Laughter)
143
469533
1922
08:03
But I missed the hospital's ecosystem.
144
471479
3896
08:07
Like me, everyone in there was broken.
145
475399
3413
08:10
But out here, among the living,
I felt like an impostor,
146
478836
4372
08:15
overwhelmed and unable to function.
147
483232
2904
08:18
I also missed the sense of clarity
I'd felt at my sickest.
148
486692
4365
08:23
Staring your mortality straight in the eye
has a way of simplifying things,
149
491581
5065
08:28
of rerouting your focus
to what really matters.
150
496670
3523
08:32
And when I was sick,
I vowed that if I survived,
151
500686
2341
08:35
it had to be for something.
152
503051
1502
08:36
It had to be to live a good life,
an adventurous life,
153
504577
3397
08:39
a meaningful one.
154
507998
1310
08:41
But the question, once I was cured,
155
509927
2459
08:44
became: How?
156
512410
1643
08:46
I was 27 years old
with no job, no partner, no structure.
157
514712
4918
08:51
And this time, I didn't have treatment
protocols or discharge instructions
158
519654
4367
08:56
to help guide my way forward.
159
524045
1799
08:58
But what I did have was an in-box
full of internet messages
160
526773
5925
09:04
from strangers.
161
532722
1289
09:06
Over the years,
162
534895
1155
09:08
people from all over the world
had read my column,
163
536074
2646
09:10
and they'd responded with letters,
comments and emails.
164
538744
4253
09:16
It was a mix, as is often
the case, for writers.
165
544046
4708
09:21
I got a lot of unsolicited advice
166
549773
2635
09:24
about how to cure my cancer
with things like essential oils.
167
552432
3643
09:29
I got some questions about my bra size.
168
557281
3023
09:32
But mostly --
169
560687
1840
09:34
(Laughter)
170
562551
1103
09:35
mostly, I heard from people who,
in their own different way,
171
563678
4738
09:40
understood what it was
that I was going through.
172
568440
2482
09:43
I heard from a teenage girl in Florida
173
571696
2841
09:46
who, like me, was coming out of chemo
174
574561
2310
09:48
and wrote me a message
composed largely of emojis.
175
576895
3968
09:53
I heard from a retired art history
professor in Ohio named Howard,
176
581649
5404
09:59
who'd spent most of his life
177
587077
1424
10:00
struggling with a mysterious,
debilitating health condition
178
588525
3455
10:04
that he'd had from the time
he was a young man.
179
592004
2587
10:07
I heard from an inmate
on death row in Texas
180
595321
4681
10:12
by the name of Little GQ --
181
600026
2464
10:14
short for "Gangster Quinn."
182
602514
2095
10:17
He'd never been sick a day in his life.
183
605442
2286
10:19
He does 1,000 push-ups
to start off each morning.
184
607752
3141
10:22
But he related to what
I described in one column
185
610917
2606
10:25
as my "incanceration,"
186
613547
2187
10:27
and to the experience of being confined
to a tiny fluorescent room.
187
615758
4185
10:33
"I know that our situations
are different," he wrote to me,
188
621458
4135
10:37
"But the threat of death
lurks in both of our shadows."
189
625966
4246
10:43
In those lonely first weeks
and months of my recovery,
190
631819
4143
10:47
these strangers and their words
became lifelines,
191
635986
3877
10:51
dispatches from people
of so many different backgrounds,
192
639887
2856
10:54
with so many different experiences,
193
642767
1974
10:56
all showing me the same thing:
194
644765
2027
11:01
you can be held hostage
195
649250
2659
11:03
by the worst thing
that's ever happened to you
196
651933
2984
11:06
and allow it to hijack
your remaining days,
197
654941
3406
11:10
or you can find a way forward.
198
658371
2872
11:14
I knew I needed to make
some kind of change.
199
662960
3823
11:18
I wanted to be in motion again
200
666807
2891
11:21
to figure out how to unstuck myself
and to get back out into the world.
201
669722
4694
11:26
And so I decided to go on
a real journey --
202
674918
4206
11:31
not the bullshit cancer one
203
679791
3206
11:35
or the mythical hero's journey
that everyone thought I should be on,
204
683021
3216
11:38
but a real, pack-your-bags
kind of journey.
205
686261
3221
11:42
I put everything I owned into storage,
206
690586
3552
11:47
rented out my apartment, borrowed a car
207
695621
2979
11:50
and talked a very a dear
but somewhat smelly friend
208
698624
5059
11:55
into joining me.
209
703707
1159
11:56
(Laughter)
210
704890
2452
11:59
Together, my dog Oscar and I
embarked on a 15,000-mile road trip
211
707366
5551
12:04
around the United States.
212
712941
1571
12:07
Along the way, we visited some
of those strangers who'd written to me.
213
715175
4905
12:12
I needed their advice,
214
720826
1555
12:14
also to say to them, thank you.
215
722405
2219
12:17
I went to Ohio and stayed with Howard,
the retired professor.
216
725276
4920
12:23
When you've suffered a loss or a trauma,
217
731085
3141
12:26
the impulse can be to guard your heart.
218
734250
2430
12:29
But Howard urged me
to open myself up to uncertainty,
219
737069
4231
12:33
to the possibilities
of new love, new loss.
220
741324
4560
12:38
Howard will never be cured of illness.
221
746561
2810
12:41
And as a young man, he had no way
of predicting how long he'd live.
222
749395
3246
12:44
But that didn't stop him
from getting married.
223
752665
2825
12:47
Howard has grandkids now,
224
755839
1944
12:49
and takes weekly ballroom dancing
lessons with his wife.
225
757807
3563
12:53
When I visited them,
226
761807
1318
12:55
they’d recently celebrated
their 50th anniversary.
227
763149
3633
12:59
In his letter to me, he'd written,
228
767815
2508
13:02
"Meaning is not found
in the material realm;
229
770347
2905
13:05
it's not in dinner, jazz,
cocktails or conversation.
230
773276
4087
13:09
Meaning is what's left
when everything else is stripped away."
231
777387
4072
13:14
I went to Texas, and I visited
Little GQ on death row.
232
782753
4573
13:19
He asked me what I did
to pass all that time
233
787999
3353
13:23
I'd spent in a hospital room.
234
791376
2121
13:26
When I told him that I got
really, really good at Scrabble,
235
794355
4230
13:30
he said, "Me, too!" and explained how,
236
798609
3426
13:34
even though he spends most of his days
in solitary confinement,
237
802059
3339
13:37
he and his neighboring prisoners
make board games out of paper
238
805422
4005
13:41
and call out their plays
through their meal slots --
239
809451
2961
13:45
a testament to the incredible tenacity
of the human spirit
240
813474
5905
13:51
and our ability to adapt with creativity.
241
819403
3622
13:56
And my last stop was in Florida,
242
824426
1936
13:58
to see that teenage girl
who'd sent me all those emojis.
243
826386
3487
14:02
Her name is Unique, which is perfect,
244
830585
3142
14:05
because she's the most luminous,
curious person I've ever met.
245
833751
4168
14:10
I asked her what she wants
to do next and she said,
246
838831
2930
14:13
"I want to go to college and travel
247
841785
1889
14:15
and eat weird foods like octopus
that I've never tasted before
248
843698
3133
14:18
and come visit you in New York
249
846855
1520
14:20
and go camping, but I'm scared of bugs,
250
848399
1904
14:22
but I still want to go camping."
251
850327
1720
14:25
I was in awe of her,
252
853768
2428
14:28
that she could be so optimistic
and so full of plans for the future,
253
856220
5270
14:33
given everything she'd been through.
254
861514
1917
14:36
But as Unique showed me,
255
864180
1675
14:37
it is far more radical
and dangerous to have hope
256
865879
4857
14:42
than to live hemmed in by fear.
257
870760
2066
14:46
But the most important thing
I learned on that road trip
258
874699
4381
14:51
is that the divide between
the sick and the well --
259
879104
4179
14:55
it doesn't exist.
260
883307
1373
14:57
The border is porous.
261
885149
2126
14:59
As we live longer and longer,
262
887585
2365
15:01
surviving illnesses and injuries
that would have killed our grandparents,
263
889974
3857
15:05
even our parents,
264
893855
1325
15:07
the vast majority of us will travel
back and forth between these realms,
265
895204
4728
15:11
spending much of our lives
somewhere between the two.
266
899956
3397
15:16
These are the terms of our existence.
267
904059
3103
15:20
Now, I wish I could say
that since coming home from my road trip,
268
908228
4198
15:24
I feel fully healed.
269
912450
2127
15:26
I don't.
270
914601
1150
15:28
But once I stopped expecting myself
271
916601
2626
15:31
to return to the person
I'd been pre-diagnosis,
272
919251
3978
15:35
once I learned to accept my body
and its limitations,
273
923253
5104
15:40
I actually did start to feel better.
274
928381
2232
15:43
And in the end, I think that's the trick:
275
931405
3849
15:47
to stop seeing our health as binary,
276
935278
3520
15:50
between sick and healthy,
277
938822
1687
15:52
well and unwell,
278
940533
1503
15:54
whole and broken;
279
942060
1698
15:55
to stop thinking that there's some
beautiful, perfect state of wellness
280
943782
4440
16:00
to strive for;
281
948246
1542
16:01
and to quit living in a state
of constant dissatisfaction
282
949812
3883
16:05
until we reach it.
283
953719
1346
16:08
Every single one of us
will have our life interrupted,
284
956605
5739
16:14
whether it's by the rip cord
of a diagnosis
285
962368
2206
16:16
or some other kind of heartbreak
or trauma that brings us to the floor.
286
964598
4440
16:22
We need to find ways to live
in the in-between place,
287
970384
5138
16:27
managing whatever body
and mind we currently have.
288
975546
4119
16:32
Sometimes, all it takes is the ingenuity
of a handmade game of Scrabble
289
980776
6630
16:39
or finding that stripped-down
kind of meaning in the love of family
290
987430
4222
16:43
and a night on the ballroom dance floor,
291
991676
2592
16:46
or that radical, dangerous hope
292
994292
2920
16:49
that I'm guessing will someday
lead a teenage girl terrified of bugs
293
997236
4121
16:53
to go camping.
294
1001381
1150
16:55
If you're able to do that,
295
1003832
1865
16:57
then you've taken the real hero's journey.
296
1005721
3920
17:01
You've achieved what it means
to actually be well,
297
1009665
4380
17:06
which is to say: alive, in the messiest,
richest, most whole sense.
298
1014069
6661
17:13
Thank you, that's all I've got.
299
1021173
1750
17:14
(Applause)
300
1022947
2762
17:17
Thank you.
301
1025733
1156
17:18
(Applause)
302
1026913
3182

▲Back to top

ABOUT THE SPEAKER
Suleika Jaouad - Writer, teacher, activist
Writer Suleika Jaouad is changing the conversation about what it means to thrive in the wake of illness and life's unexpected interruptions.

Why you should listen

When Suleika Jaouad finally walked out of the hospital -- after countless rounds of chemo, a lifesaving clinical trial and a bone marrow transplant -- she was, according to the doctors, "cured." But as she would soon learn, a cure is not where the work of healing ends; it's where it begins. She set out on a 100-day, 15,000-mile road trip across the country to meet some of the people who had written to her during her time in the hospital. Her extraordinary journey resulted in her debut memoir, Between Two Kingdoms.

Jaouad is an Emmy-winning journalist, author, teacher and activist. Her career aspirations as a foreign correspondent were cut short when, at age 22, she was diagnosed with leukemia. She began writing the acclaimed New York Times column and video series "Life, Interrupted" from the front lines of her hospital bed and has since become a fierce advocate for those living with illness and other forms of adversity.

Jaouad served on Barack Obama's Presidential Cancer Panel, and her advocacy work, public speaking and reporting have brought her everywhere from the United Nations and Capitol Hill to a maximum security prison and a two-room schoolhouse in rural Montana.

More profile about the speaker
Suleika Jaouad | Speaker | TED.com