A Beautiful story

[Guest guest]

I'll post this on the ccsupportstories board but thought you'd all like to

read this.

It really puts disease in perspective. In this case it is chronic Crohn's

disease but the feelings

are similar.

Date: Sat Aug 3, 2002 1:03 am

Subject: A Beautiful Read altman23

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http://www.cmbm.org/conferences/ccc2001/Transcripts/Remen.htm

Life is full of mystery. There are many things that we cannot

understand, but we can witness and even know in ourselves. In truth,

we all know many things that we cannot measure. And over the years, I

have found in a lot of circumstances, knowing something may be much

more important than understanding it or being able to measure it.

I've been a physician for 38 years, and I've taught on the faculty of

three major medical schools. I'm trained as a researcher. And for the

last 30 years, I've cared for people with cancer and listened to

their stories. And on the basis of all this experience in medicine, I

would really want to say that it's possible to research and study and

measure life for many years without knowing life at all. You know,

some of the important things about life cannot be learned through

analysis. It can be only learned by experiencing life whole. And so

it may be important for us all to consider the possibility that

science may have defined life too small, because when we define life

too small, we define our work too small, and we define ourselves too

small as well. And I have actually come to think that life might best

be defined, not by science, but by mystery.

I want to start with a story here about the first time that I noticed

the will to live. And it was something that changed my life, so I

remember exactly where I was at the time. I was 14 years old, and I

was walking up Fifth Avenue between 34th Street and 35th Street on a

Saturday morning with two of my friends, and we were doing what young

teenagers did on Saturday morning in the '50s: We were shopping.

And as we walked up the street, a little flash of green caught my

eye. And there, growing right through the New York City sidewalk were

two tiny green blades of grass. Now, they weren't growing through a

crack in the sidewalk. They were growing right through the cement.

And this, of course, stopped us all cold. Now we were very

sophisticated young people. We were 14 years old, but of course, we

were New Yorkers. So we knew quite a bit about power. But none of us

had ever encountered this kind of power before.

And I remembered it for years, the image of the two little tender

blades of grass coming right through the cement. I remembered -- even

before I had a glimmer of its personal significance and meaning for

me, because at the time I saw it, it struck me as a kind of a miracle.

Now, about a year later, when I was 15 years old and I was diagnosed

with Crohn's disease, the disease that I've lived with for all of my

life, a group of experts in white coats gathered around me and my

family, and they told us the facts. No one knew what caused this

disease. No one had any idea how to cure it. I would have multiple

surgeries and I would die by the time I was 40.

Now, at 15, this was not my dream of the future. I had something else

in mind. So it was a time of great darkness and despair. And I come

from a very medical family: In two generations of my family, there

are nine physicians and three nurses. And so we never questioned what

the experts had told us, and I made many life decisions based on this

information, decisions about marriage and children. It didn't seem

right to me to start something that I knew that I was not going to be

able to finish. It would be years before I would make the connection

between the two little blades of grass that I had seen the year

before and myself.

Thinking back on this, if only one of the many physicians around me

had suggested that it might be possible for me to find something in

me that could break through this obstacle of this disease, something

that medicine could not measure, even understand, that perhaps I

could strengthen this in myself. It would have made a great

difference to me. But no one did. And now that I've been a physician

myself all these years, I think I understand why.

My doctors didn't tell me because they simply didn't know. You do not

find will to live under W in Essentials of Internal Medicine. This is

not something you learn from a medical textbook. This is something

you learn only by being open to observing life itself.

You know, why allow mystery in life? In the presence of mystery, life

becomes more filled with possibility, more inspiring actually,

somehow larger. And in allowing a larger and more mysterious

definition of life than science may offer us, we may discover one of

mystery's greatest gifts, which happens to be hope. Now, you know,

it's really sad, because the facts in my situation have never

changed. There is still no known cause for Crohn's disease and still

no definitive cure. I live with this problem daily. I've had eight

major abdominal surgeries. I no longer have most of my intestine. But

I have not been dead these past 23 years. (Laughter)

So I suppose I'm here to remind you that what was in those two little

green blades of grass is in us all. You know, whenever there's a

difference between the facts and the stories, you're in the presence

of mystery. And life is often not limited by the facts. Life is

filled with mystery. The world is not made up of facts. The world is

made up of stories. And each of our stories is as unique as our

fingerprints. Each of us is a story that has never happened in the

history of the world before. You know, a diagnosis is a confrontation

with the unknown, an encounter with mystery, and it would be good to

acknowledge the mystery in things just a little bit more -- as

friends, as family, as health professionals, certainly as physicians.

I think it's very important to be able to say that the diagnosis is

cancer or Crohn's disease or whatever, but I think we also need to

add that what that will mean remains to be seen, and then become a

part of someone's story as they live it out.

[Guest guest]

Very profound...thanks for sharing, Narice

Donelle

Caregiver to Glenn

[Guest guest]

Narice, that story of the lady physician with Crohn's disease who talks about

the will to live made me cry. Thank you for sending this. Also, if anyone did

not click on the link, please do so. The same woman is giving a speech or

lecture and this is a much longer transcript with other stories. I really

enjoyed it.

Thanks again.

~Deb from KS

flipper759@... wrote:

I'll post this on the ccsupportstories board but thought you'd all like to

read this.

It really puts disease in perspective. In this case it is chronic Crohn's

disease but the feelings

are similar.

Date: Sat Aug 3, 2002 1:03 am

Subject: A Beautiful Read altman23

Offline

Send Email

http://www.cmbm.org/conferences/ccc2001/Transcripts/Remen.htm

Life is full of mystery. There are many things that we cannot

understand, but we can witness and even know in ourselves. In truth,

we all know many things that we cannot measure. And over the years, I

have found in a lot of circumstances, knowing something may be much

more important than understanding it or being able to measure it.

I've been a physician for 38 years, and I've taught on the faculty of

three major medical schools. I'm trained as a researcher. And for the

last 30 years, I've cared for people with cancer and listened to

their stories. And on the basis of all this experience in medicine, I

would really want to say that it's possible to research and study and

measure life for many years without knowing life at all. You know,

some of the important things about life cannot be learned through

analysis. It can be only learned by experiencing life whole. And so

it may be important for us all to consider the possibility that

science may have defined life too small, because when we define life

too small, we define our work too small, and we define ourselves too

small as well. And I have actually come to think that life might best

be defined, not by science, but by mystery.

I want to start with a story here about the first time that I noticed

the will to live. And it was something that changed my life, so I

remember exactly where I was at the time. I was 14 years old, and I

was walking up Fifth Avenue between 34th Street and 35th Street on a

Saturday morning with two of my friends, and we were doing what young

teenagers did on Saturday morning in the '50s: We were shopping.

And as we walked up the street, a little flash of green caught my

eye. And there, growing right through the New York City sidewalk were

two tiny green blades of grass. Now, they weren't growing through a

crack in the sidewalk. They were growing right through the cement.

And this, of course, stopped us all cold. Now we were very

sophisticated young people. We were 14 years old, but of course, we

were New Yorkers. So we knew quite a bit about power. But none of us

had ever encountered this kind of power before.

And I remembered it for years, the image of the two little tender

blades of grass coming right through the cement. I remembered -- even

before I had a glimmer of its personal significance and meaning for

me, because at the time I saw it, it struck me as a kind of a miracle.

Now, about a year later, when I was 15 years old and I was diagnosed

with Crohn's disease, the disease that I've lived with for all of my

life, a group of experts in white coats gathered around me and my

family, and they told us the facts. No one knew what caused this

disease. No one had any idea how to cure it. I would have multiple

surgeries and I would die by the time I was 40.

Now, at 15, this was not my dream of the future. I had something else

in mind. So it was a time of great darkness and despair. And I come

from a very medical family: In two generations of my family, there

are nine physicians and three nurses. And so we never questioned what

the experts had told us, and I made many life decisions based on this

information, decisions about marriage and children. It didn't seem

right to me to start something that I knew that I was not going to be

able to finish. It would be years before I would make the connection

between the two little blades of grass that I had seen the year

before and myself.

Thinking back on this, if only one of the many physicians around me

had suggested that it might be possible for me to find something in

me that could break through this obstacle of this disease, something

that medicine could not measure, even understand, that perhaps I

could strengthen this in myself. It would have made a great

difference to me. But no one did. And now that I've been a physician

myself all these years, I think I understand why.

My doctors didn't tell me because they simply didn't know. You do not

find will to live under W in Essentials of Internal Medicine. This is

not something you learn from a medical textbook. This is something

you learn only by being open to observing life itself.

You know, why allow mystery in life? In the presence of mystery, life

becomes more filled with possibility, more inspiring actually,

somehow larger. And in allowing a larger and more mysterious

definition of life than science may offer us, we may discover one of

mystery's greatest gifts, which happens to be hope. Now, you know,

it's really sad, because the facts in my situation have never

changed. There is still no known cause for Crohn's disease and still

no definitive cure. I live with this problem daily. I've had eight

major abdominal surgeries. I no longer have most of my intestine. But

I have not been dead these past 23 years. (Laughter)

So I suppose I'm here to remind you that what was in those two little

green blades of grass is in us all. You know, whenever there's a

difference between the facts and the stories, you're in the presence

of mystery. And life is often not limited by the facts. Life is

filled with mystery. The world is not made up of facts. The world is

made up of stories. And each of our stories is as unique as our

fingerprints. Each of us is a story that has never happened in the

history of the world before. You know, a diagnosis is a confrontation

with the unknown, an encounter with mystery, and it would be good to

acknowledge the mystery in things just a little bit more -- as

friends, as family, as health professionals, certainly as physicians.

I think it's very important to be able to say that the diagnosis is

cancer or Crohn's disease or whatever, but I think we also need to

add that what that will mean remains to be seen, and then become a

part of someone's story as they live it out.

---------------------------------

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