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TEDMED 2014

Debra Jarvis: Yes, I survived cancer. But that doesn't define me

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Views 975,611

Debra Jarvis had worked as a hospital chaplain for nearly 30 years when she was diagnosed with cancer. And she learned quite a bit as a patient. In a witty, daring talk, she explains how the identity of “cancer survivor” can feel static. She asks us all to claim our hardest experiences, while giving ourselves room to grow and evolve.

- Chaplain + author
Debra Jarvis isn't your typical hospital chaplain. With wry wit, she aims to comfort patients -- and also challenge them. Full bio

I just met you on a bus,
00:13
and we would really like
to get to know each other,
00:16
but I've got to get off at the next stop,
00:19
so you're going to tell me
three things about yourself
00:21
that just define you as a person,
00:26
three things about yourself
00:30
that will help me understand who you are,
00:31
three things that just
get to your very essence.
00:35
And what I'm wondering
00:39
is, of those three things,
00:42
is any one of them
00:45
surviving some kind of trauma?
00:47
Cancer survivor, rape survivor,
00:52
Holocaust survivor, incest survivor.
00:58
Ever notice how we tend to identify ourselves
01:03
by our wounds?
01:07
And where I have seen this survivor identity
01:09
have the most consequences
01:14
is in the cancer community.
01:16
And I've been around this
community for a long time,
01:19
because I've been a hospice
and a hospital chaplain
01:21
for almost 30 years.
01:25
And in 2005, I was working at a big cancer center
01:28
when I received the news that
01:34
my mother had breast cancer.
01:36
And then five days later,
01:39
I received the news that I had breast cancer.
01:42
My mother and I can be competitive —
01:47
(Laughter) —
01:50
but I was really not trying to
compete with her on this one.
01:51
And in fact, I thought, well,
01:56
if you have to have cancer,
01:58
it's pretty convenient to be working
02:00
at a place that treats it.
02:02
But this is what I heard from
a lot of outraged people.
02:03
What?
02:06
You're the chaplain.
02:07
You should be immune.
02:09
Like, maybe I should have just gotten off
02:11
with a warning instead of an actual ticket,
02:14
because I'm on the force.
02:16
So I did get my treatment at the
cancer center where I worked,
02:20
which was amazingly convenient,
02:23
and I had chemotherapy
02:25
and a mastectomy, and a saline implant put in,
02:27
and so before I say another word,
let me just say right now,
02:30
this is the fake one. (Laughter)
02:32
I have found that I need to get that out of the way,
02:37
because I'll see somebody go
02:40
"Oh, I know it's this one."
02:42
And then I'll move or I'll
gesture and they'll go,
02:44
"No, it's that one."
02:47
So now you know.
02:49
I learned a lot being a patient,
02:51
and one of the surprising things was
02:53
that only a small part of the cancer experience
02:55
is about medicine.
02:59
Most of it is about feelings and faith
03:01
and losing and finding your identity
03:06
and discovering strength
03:08
and flexibility you never even knew you had.
03:10
It's about realizing that
03:14
the most important things in life are
03:16
not things at all, but relationships,
03:19
and it's about laughing in the face of uncertainty
03:22
and learning that the way to
get out of almost anything
03:26
is to say, "I have cancer."
03:30
So the other thing I learned was that
03:34
I don't have to take on "cancer survivor"
03:36
as my identity,
03:40
but, boy, are there powerful forces
03:42
pushing me to do just that.
03:46
Now, don't, please, misunderstand me.
03:49
Cancer organizations
03:53
and the drive for early screening
03:55
and cancer awareness and cancer research
03:57
have normalized cancer,
04:00
and this is a wonderful thing.
04:02
We can now talk about cancer
04:03
without whispering.
04:05
We can talk about cancer and
we can support one another.
04:07
But sometimes, it feels
04:12
like people go a little overboard
04:15
and they start telling us how we're going to feel.
04:16
So about a week after my surgery,
04:21
we had a houseguest.
04:25
That was probably our first mistake.
04:28
And keep in mind that
04:31
at this point in my life
04:32
I had been a chaplain for over 20 years,
04:34
and issues like dying and death
04:37
and the meaning of life,
04:40
these are all things I'd been
yakking about forever.
04:41
So at dinner that night,
04:45
our houseguest proceeds to
stretch his arms up over his head,
04:47
and say, "You know, Deb,
04:50
now you're really going to learn what's important.
04:53
Yes, you are going to make some big changes
04:57
in your life,
04:59
and now you're going to start
thinking about your death.
05:01
Yep, this cancer is your wakeup call."
05:04
Now, these are golden words
05:10
coming from someone who is speaking about
05:13
their own experience,
05:15
but when someone is telling you
05:17
how you are going to feel,
05:20
it's instant crap.
05:22
The only reason I did not kill him
05:24
with my bare hands
05:27
was because I could not lift my right arm.
05:29
But I did say a really bad word to him,
05:33
followed by a regular word, that —
05:37
(Laughter) —
05:40
made my husband say, "She's on narcotics."
05:41
(Laughter)
05:45
And then after my treatment, it just felt like
05:47
everyone was telling me what my
experience was going to mean.
05:49
"Oh, this means you're going to be doing the walk."
05:53
"Oh, this means you're coming to the luncheon."
05:55
"This means you're going to be wearing
05:57
the pink ribbon and the pink t-shirt
05:58
and the headband and the earrings
06:01
and the bracelet and the panties."
06:03
Panties. No, seriously, google it.
06:06
(Laughter)
06:10
How is that raising awareness?
06:12
Only my husband should be seeing my panties.
06:14
(Laughter)
06:16
He's pretty aware of cancer already.
06:17
It was at that point where I felt like, oh my God,
06:22
this is just taking over my life.
06:25
And that's when I told myself,
claim your experience.
06:28
Don't let it claim you.
06:33
We all know that
06:37
the way to cope with trauma, with loss,
06:39
with any life-changing experience,
06:43
is to find meaning.
06:45
But here's the thing:
06:48
No one can tell us
06:50
what our experience means.
06:51
We have to decide what it means.
06:54
And it doesn't have to be some gigantic,
06:58
extroverted meaning.
07:00
We don't all have to start a foundation
07:02
or an organization or write a book
07:04
or make a documentary.
07:06
Meaning can be quiet
07:09
and introverted.
07:12
Maybe we make one small decision about our lives
07:14
that can bring about big change.
07:20
Many years ago, I had a patient,
07:25
just a wonderful young man
07:27
who was loved by the staff,
07:29
and so it was something of a shock to us to realize
07:32
that he had no friends.
07:35
He lived by himself,
07:39
he would come in for chemotherapy by himself,
07:41
he would receive his treatment,
07:45
and then he'd walk home alone.
07:47
And I even asked him. I said, "Hey,
07:51
how come you never bring a friend with you?"
07:52
And he said, "I don't really have any friends."
07:55
But he had tons of friends on the infusion floor.
08:00
We all loved him, and people were going
in and out of his room all the time.
08:02
So at his last chemo,
08:07
we sang him the song
08:10
and we put the crown on his
head and we blew the bubbles,
08:11
and then I asked him, I said,
08:14
"So what are you going to do now?"
08:16
And he answered,
08:20
"Make friends."
08:22
And he did.
08:24
He started volunteering
and he made friends there,
08:26
and he began going to a church
and he made friends there,
08:30
and at Christmas he invited my husband
and me to a party in his apartment,
08:32
and the place was filled with his friends.
08:35
Claim your experience.
08:40
Don't let it claim you.
08:43
He decided that the meaning of his experience
08:44
was to know the joy of friendship,
08:49
and then learn to make friends.
08:53
So what about you?
08:58
How are you going to find meaning
09:01
in your crappy experience?
09:04
It could be a recent one,
09:06
or it could be one that you've been carrying around
09:08
for a really long time.
09:10
It's never too late to change what it means,
09:14
because meaning is dynamic.
09:19
What it means today
09:21
may not be what it means a year from now,
09:22
or 10 years from now.
09:24
It's never too late to become someone other
09:27
than simply a survivor.
09:30
Hear how static that word sounds?
09:33
Survivor.
09:37
No movement, no growth.
09:39
Claim your experience.
09:43
Don't let it claim you, because if you do,
09:45
I believe you will become trapped,
09:48
you will not grow, you will not evolve.
09:51
But of course, sometimes it's not outside pressures
09:57
that cause us to take on that identity of survivor.
10:00
Sometimes we just like the perks.
10:04
Sometimes there's a payoff.
10:08
But then we get stuck.
10:12
Now, one of the first things I learned
10:16
as a chaplain intern was the three C's
10:17
of the chaplain's job:
10:22
Comfort, clarify and, when necessary, confront
10:24
or challenge.
10:31
Now, we all pretty much love the comforting
10:33
and the clarifying.
10:35
The confronting, not so much.
10:37
One of the other things that I loved
10:42
about being a chaplain was
10:44
seeing patients a year, or even several years
10:46
after their treatment, because
10:51
it was just really cool to see
how they had changed
10:53
and how their lives had evolved
10:55
and what had happened to them.
10:57
So I was thrilled one day
10:59
to get a page down into the lobby of the clinic
11:02
from a patient who I had seen the year before,
11:04
and she was there with her two adult daughters,
11:08
who I also knew, for her one year follow-up exam.
11:10
So I got down to the lobby, and they were ecstatic
11:15
because she had just gotten
all of her test results back
11:18
and she was NED: No Evidence of Disease.
11:20
Which I used to think meant Not Entirely Dead.
11:27
So they were ecstatic, we sat down to visit,
11:31
and it was so weird, because
11:37
within two minutes, she
started retelling me the story
11:40
of her diagnosis and her
surgery and her chemo,
11:44
even though, as her chaplain,
I saw her every week,
11:48
and so I knew this story.
11:52
And she was using words like suffering,
11:54
agony, struggle.
11:57
And she ended her story with,
12:01
"I felt crucified."
12:04
And at that point, her two
daughters got up and said,
12:09
"We're going to go get coffee."
12:12
And they left.
12:15
Tell me three things about
yourself before the next stop.
12:19
People were leaving the bus before she even got
12:21
to number two or number three.
12:24
So I handed her a tissue,
12:30
and I gave her a hug,
12:33
and then, because I really cared for this woman,
12:36
I said,
12:40
"Get down off your cross."
12:42
And she said, "What?"
12:44
And I repeated, "Get down off your cross."
12:49
And to her credit, she could
talk about her reasons
12:54
for embracing and then clinging to this identity.
12:59
It got her a lot of attention.
13:04
People were taking care of her for a change.
13:06
But now, it was having the opposite effect.
13:09
It was pushing people away.
13:13
People kept leaving to get coffee.
13:15
She felt crucified by her experience,
13:19
but she didn't want to let that crucified self die.
13:23
Now, perhaps you are thinking
13:29
I was a little harsh with her,
13:32
so I must tell you that
13:35
I was speaking out of my own experience.
13:37
Many, many years before,
13:41
I had been fired from a job that I loved,
13:43
and I would not stop talking about my innocence
13:47
and the injustice and the betrayal and the deceipt,
13:50
until finally, just like this woman,
13:54
people were walking away from me,
13:55
until I finally realized
13:57
I wasn't just processing my feelings,
14:00
I was feeding them.
14:04
I didn't want to let that crucified self die.
14:07
But we all know that with any resurrection story,
14:11
you have to die first.
14:16
The Christian story,
14:19
Jesus was dead a whole day in the tomb
14:21
before he was resurrected.
14:24
And I believe that for us,
14:27
being in the tomb
14:28
means doing our own deep inner work
14:30
around our wounds
14:34
and allowing ourselves to be healed.
14:37
We have to let that crucified self die
14:42
so that a new self, a truer self,
14:45
is born.
14:48
We have to let that old story go
14:51
so that a new story, a truer story,
14:54
can be told.
14:58
Claim your experience. Don't let it claim you.
15:01
What if there were no survivors,
15:06
meaning, what if people decided
15:09
to just claim their trauma as an experience
15:12
instead of taking it on as an identity?
15:15
Maybe it would be the end of being
15:19
trapped in our wounds
15:21
and the beginning of amazing
15:23
self-exploration and discovery and growth.
15:27
Maybe it would be the start of defining ourselves
15:31
by who we have become
15:35
and who we are becoming.
15:38
So perhaps survivor was not
15:42
one of the three things that you would tell me.
15:48
No matter.
15:53
I just want you all to know that
15:54
I am really glad that we are on this bus together,
15:57
and this is my stop.
16:01
(Applause)
16:05

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About the speaker:

Debra Jarvis - Chaplain + author
Debra Jarvis isn't your typical hospital chaplain. With wry wit, she aims to comfort patients -- and also challenge them.

Why you should listen

For writer, ordained minister and hospital chaplain Debra Jarvis, humor is a powerful balm. She is not afraid to be funny even when doing very serious work with the sick and dying as a hospice chaplain, a pastoral consultant for volunteer groups caring for people with AIDS and MS, and a staff chaplain at the Seattle Cancer Care Alliance. Debra is the author of It’s Not About the Hair: And Other Certainties of Life & Cancer and numerous other books. Currently on sabbatical in Geneva, Debra’s last job was as writer-in-residence for the University Congregational United Church of Christ in Seattle. In her free time, Debra accompanies her Cairn terrier Max in his therapy dog work.

More profile about the speaker
Debra Jarvis | Speaker | TED.com