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Share Guide: You wrote
something in your book Kitchen Table
Wisdom that was very
profound: "Diagnosis is an opinion, not a prediction." That would go
along with the thought that the scientist or doctor will give you as
much as he knows, but life is bigger than his diagnostic skills.
Remen: Right. My own
story is an example. I was diagnosed with Crone's disease at the age
of 15. They told me I would be dead by age 40. I believed this, of
course. I come from a medical family and we all believed it. I made
many life plans based on this belief. In my case, nobody offered the
possibility that I might be able to survive this illness. I even had
8 major surgeries. But I have not been dead the past 20 years, and I
am over 60! Technically speaking, I think you could say I am a
disabled person. I can only eat 6 different foods. I am partly blind.
But there is often a difference between the facts and the story. I
travel all over the country. I have a full life. It's too bad that
people need to put out a diagnosis like that, such as "You'll be dead
by the time you are 40" or "You only have three years to live." It
would be wonderful if we could simply acknowledge the mystery in
life, and say to people, "You have Crone's disease" or "You have
cancer." This is the diagnosis, but what it will mean remains to be
seen. We need to simply accompany people as they discover what their
own story will be.
The Share Guide: If you look at
the word diagnosis, it has the word "gnosis" in it,
which means mystery. I believe that's from the Greek.
Dr. Remen: Yes, it means "the
The Share Guide: It's important
to pay attention to the diagnosis, but not to fixate
Dr. Remen: Right. It's an
opinion. That reminds me of a wonderful older patient
of mine that called me this week to say hello. She had ovarian cancer
very badly 13 years ago. Most people think that when they have
ovarian cancer that it's the end. For many people it's not the end at
The Share Guide: Is it due to
your strength to resist the disease?
Dr. Remen: I don't know. I
certainly believed I was going to die. I
to have children because I could not finish that. I decided not to
marry because I would abandon someone in the middle of their life.
The Share Guide: So you went
along with the prevalent belief system, but you lived
Dr. Remen: That is where the
mystery comes in, I think. People have said to me,
"Have you any idea why you survived?" I want to say, "Not the
The Share Guide: My own Mom was
diagnosed with ovarian cancer, and passed within 90
days of being diagnosed. She was a devout Roman Catholic and ready
for the next world. How important a factor is the life force and the
will to live for a person's chance of recovery?
Dr. Remen: It's quite
But many of us have a strange notion
the will to live is. The will to live is part of the mystery in life.
It's very different than the wish to live. The will to live isn't a
preference; it's an impulse towards life which is in the heart of all
living things. It is in the unconscious mind and it's unconditional.
It's a force of nature; it is in everything. The wish to live is what
most people really seem to be talking about in regards to the will to
live. This is highly personal, shaped by our attachments to life. It
is our own personal experience with the life force itself. It is
larger than ourselves, but we can find ways to collaborate with it
and strengthen it. I think that most people that have had the kind of
experience that I have had working with people with cancer (going on
29 years now) know there is a lot of mystery here. I spend a lot of
time listening to people's stories. I have seen so many people that
have wanted to live and didn't. I have also seen many people who have
not particularly wanted to live, and have lived. I see people living
when they have no business living; they should die from this thing
because it is so overwhelming and they manage to live in spite of it.
I have seen people die for no reason I could figure out. So there is
a lot of mystery here and it's very frustrating to people. We are a
culture of control, we want to be in control of things. We want to
see cause and effect: if I do this then this happens; if I don't do
this then that happens. But life is larger than we are.
The Share Guide: I think in my
case, her main goal was to raise her
her husband was gone, she had no urge to remarry. She focused her
life around the Church anyway. I think her story was that she did
everything that she wanted to do here.
Dr. Remen: How beautiful! The
Dalai Lama said something "We don't die because
we're ill. We die because we are complete."
The Share Guide: Yes, that is
Dr. Remen: Very profound.
The Share Guide: I have this
when I am on my deathbed, I don't
have any regrets.
Dr. Remen: My own mother decided
she wanted to have open heart surgery when she
was in her 80's because she had a condition that meant she would
surely die if she did not have the open heart surgery. The morning of
the surgery I arrived before they took her upstairs. I walked in and
she looked at me and said, "Oh, I am so glad you are here! I just
wanted to tell you something. I just want to be sure that you know
that no matter what happens, I am satisfied." How do we live so that
at the end of our lives we might be able to say, "I am satisfied."
That is a worthy goal in life.
The Share Guide: So if there is
anything you deeply want to do in life, do it while
Dr. Remen: I wouldn't say that.
That might get you following an awful lot of
things you might regret. However, the things that are most deeply
meaningful, do them anyway you can. Don't hold back because you can't
do them perfectly.
The Share Guide: Here is a
different scenario. A person might be feeling well and go
to the doctor for a routine check up. They discover that they have a
drastic diagnosis and then after that become ill. Or they might
ignore dire predictions and get well. How much does the mind
contribute when we believe in these things?
Dr. Remen: Is there a
story you are referring to?
The Share Guide: I was thinking
about a story from Kitchen Table Wisdom--the
story of one gentleman who was riddled with cancer in his bones and
organs. He was expected to die but he recovered
Dr. Remen: You mean the
wonderful story from Sloan Kettering Hospital about
spontaneous remission. There was this man who had been through
chemotherapy that had stopped working. He went to the hospital to
die. This was many years ago; there was no Hospice then. He had a
miraculous recovery. Things happen all the time that cannot be
explained, that are profoundly mysterious. That was one of them. It's
so un-American--the fact that life is based NOT on science but on
mystery. Things happen that we can't measure or explain. All we can
do is observe them and be inspired by them. I think we have been
caught up by science here, Dennis, and technology, as if science is
going to define life for us.
The Share Guide: Yes, this is
the story I was referring to.
Dr. Remen: All these lesions
man had (right under our noses, so
went away and never came back! Were we in awe about this? No. We were
frustrated as doctors. So we had to confirm the diagnosis by sending
out slides for reanalysis. The diagnosis was a very malignant cancer.
The conclusion that people came to was that the reason all these
lesions had gone away was that the chemotherapy, which had been
stopped 11 months before, had suddenly worked. Amazing! I think that
too much "scientific objectivity" can actually make a person
The Share Guide: I think you
call that selective inattention.
Dr. Remen: That's what it's
called in psychology, but in just plain talk I'd
say: it's hard to think outside of the box. But that is where life
is! Outside of the box! The embarrassing part about that story, which
I don't mention in my book, is that I never questioned that
conclusion (that the chemotherapy had worked 11 months later) for 15
The Share Guide: So you were
thinking inside the box with your peers?
Dr. Remen: We all think inside
of the box. All of us have certain ideas about
life. Often we can't see life because we are always seeing with those
The Share Guide: Do you think we
have the power to decide to go and just let
Dr. Remen: I don't think so.
Certainly not from what I have seen. I have seen
people who very much wanted to die and did not. I think that there
are other issues here--issues of mystery, issues of karma.
The Share Guide: We have to
accept the mystery. . .but some people linger in terrible
pain for a long time.
Dr. Remen: And you say to
yourself, "Why is this?" I think we need to look at
life as larger than science, and not allow science to finalize things
for us. Each one of us is a Mystery, and when I say "mystery" I mean
that with a capital M.
The Share Guide: To me, a lot
this comes down to is just acceptance.
Dr. Remen: Many years ago, in
of my earlier surgeries, I asked
anesthesiologist if he could tell me just before he pushed the
medicine in my arm that would put me to sleep, because I wanted to
say a prayer. When he said he was ready, I said something called
Shema which is the basic prayer of Judaism, "Hear, O Israel, the LORD
is our God, the LORD is One." I interpret it this way: There is no
place in the universe that is not held in the hands of God. It is a
statement of surrender but also of safety. The surgeon leaned over
and said, "Was that a prayer?" and I said, "Yes, it was." He said,
"Oh, let me say out loud the thing I say before every surgery I do.
"Dear LORD, help us to do here whatever is most right." I had been
very frightened up until that point. Suddenly I realized that there
are no mistakes on the deepest, most mysterious level. Everything has
a purpose in this profound experience. I was NOT in danger. I might
die, but I wasn't in danger. I remember an enormous sense of calm
came over me, and then I woke up in the recovery room!
The Share Guide: I believe that
true for surgery, but also for life in
general--the idea of starting your day with a prayer, mantra or
meditation. To be in tune with the positive is the best way to enter
your office, or the operating room or your car, or
Dr. Remen: I am not sure what
you mean by "in tune."
The Share Guide: In harmony with
higher forces, the positive good will of the
universe. You can call it God if you want, or the spirit in
Dr. Remen: The prayer I often
use silently for my patients before I see someone
is, "May I be used for the good" I may not understand everything, but
I am available to be used. I think where we go off course, is when we
start to do what is called petitionary prayer. This is basically
saying, "I want this. Make this happen for me."
The Share Guide: Like a Wish
Dr. Remen: Right. It may come
from our deepest heart that we wish certain things
to go in certain ways, but I don't think that's what prayer really
is, do you?
The Share Guide: The most open
prayers are like what you said, "Let me be used,"
rather than, "This is the way I want to be used."
Dr. Remen: Yes, I agree. I think
that when we pray, we remind ourselves about
the nature of the world. We don't change the outer world, we change
our inner consciousness. We move from this kind of individual,
isolated, egocentric," I'm the cause of everything, make it happen"
kind of consciousness to a connection on the deepest level. It's a
larger reality that is by nature mysterious, something we can never
know but we will feel it's presence in our lives and in the lives of
other people. It becomes an act of surrender when you orient yourself
at the beginning of your day towards the highest possible purpose.
Not controlling, but surrendering. You used a word earlier that means
a great deal to me because there is lots of power in it.
The Share Guide: Which word?
Dr. Remen: Acceptance. Prayer is
a doorway into acceptance, which is the first
step in having things change. That is one of the great
The Share Guide: I am
envisioning my readers, those of whom are ill, or perhaps have a
friend or family member who is ill. I am thinking of helping by
publishing this interview, by giving them insight in how to deal with
this very difficult part of life. It is hard however old or young you
are when you face life-threatening illness.
Dr. Remen: Life is precious no
matter how old you are. I remember my
to the cardiologist, who happened to be about 50 years younger than
she, "Young man, I want to be sure that you understand that my life
is as precious to me as yours is to you."
The Share Guide: Death and dying
is a taboo subject in this country. All of the
advertisements talk about being young and happy. There isn't a lot of
respect in this culture for the wisdom of the elderly like there is
in China, for example.
Dr. Remen: It's not just the
elderly. What about respect for
The Share Guide: We tend to shy
away from this.
Dr. Remen: We are not a kind
culture. We have contempt for the parts
ourselves that are capable of suffering.
The Share Guide: When we take
medication, we also shut off our feelings. I think there
are a lot of people who don't ever think about this subject until
they get there, because it's one that they want to avoid!
Dr. Remen: Right. I must say
no two people experience a disease
The Share Guide: Everybody is
Dr. Remen: It's as individual
their own fingerprints. Every
disease, every loss, every disappointment has meaning. There is in
every one of these things a potential to be more than who you were
before this thing happened to you. Sometimes people can take steps
into that potential, sometimes they can't. Significant illness is
transformative. You are not the person who you were before this
The Share Guide: So you believe
that suffering can be a doorway into
Dr. Remen: Yes, I think it can
be. Many of the world's religions speak of this.
But there are other ways to be transformed. . .becoming parents, or
falling in love. Among the many life-altering things that happen to
us, suffering is one of them. This moves it from a tragic catastrophe
(which it always is, by the way) and allows us to grow beyond it in a
very interesting way. For example, when I was 27 it turned out that I
was going to need this very major surgery. I remember my doctor
telling me about this. He took his fist and bashed it into the wall.
I was a young woman at the time. I could tell two things: one is that
he obviously cared deeply about what was happening. Two, he felt
somehow or other that he hadn't been able to protect me from being
diminished. I wish I could tell him now that he sold me short. All of
the remarkable things that I have had in my life and all of the
wonderful experiences I've had--meeting with other people, and
knowing them and nurturing their strength, all of the writing and
traveling--I don't think any of that would have happened had I not
had Crone's disease. I think I would have turned into the head of the
department of pediatrics in a major medical school, which is where I
The Share Guide: In other
own problems caused you to grow.
Dr. Remen: Exactly! Growth is a
strategy of being moved by adversity to grow
larger than the things we have to live with. Any single mom can tell
you that! We have the capacity to find within ourselves something we
never dreamed was true. I suspect it's called forth from us by the
actual difficulty which faces us. Growth is a coping strategy. The
thing that my doctor didn't know was that it is possible to have a
good life even though it isn't an easy life. I have met many people
who have easy lives and are profoundly depressed.
The Share Guide: Because they
haven't grown that much?
Dr. Remen: They have no reason
live. No one needs them; nothing
to them, and they don't matter to anybody.
The Share Guide: It's clear that
illness can intensify feelings of isolation. How big
of a problem do you think this is, and how much does it factor in the
Dr. Remen: It's very important.
Illness does a couple of things: one
is that it
intensifies the feeling of isolation, and two is that it uncovers a
feeling of isolation. There are people who haven't realized that they
were not connected to other people until they become ill. They have
lived among other people for years and never connected to anybody.
They lived essentially alone right in the middle of their family. No
one knows what they think, no one knows how it is for them, because
that was the style of the family. Illness breaks that open. Many
people with cancer have said to me, "I had no idea my life mattered
to so many people." When I went into the grocery store with my scarf
on my head, the woman cashier that had been ringing me up for years
spoke to me and said how sorry she was, and how she often looked
forward to my smile. I had been coming there for years and had no
idea. What you discover, through your vulnerability becoming visible,
is that everyone else is vulnerable too. People are able to express
to you that it doesn't matter. Conversely, the people we expect to be
there for us, some of them are, but some are not. People who you
wouldn't even imagine step forward. You have no idea you meant so
much to them. There is a web of connection that exists between us.
When we become sick, then the web of connection becomes absolutely
The Share Guide: You have
mentioned in your book that sometimes people feel awkward
dealing with those who become critically ill. Like the story of the
running partner who suddenly stopped showing up when his running mate
was diagnosed with cancer.
Dr. Remen: This because many of
don't know that our love matters.
We are a
technological culture, so we think that we are supposed to be able to
fix people's problems. Or we think there is a "right" thing to say.
People want to be comforting, but they don't know how to do that.
What I have discovered is that the simple human connection is what
matters. Nobody expects you to fix their lymphoma or breast cancer,
but people expect or hope that their suffering really matters to you.
All that's needed is to say, "I heard about your illness, I am so
sorry." Just say it and really mean it; say it from your heart. There
is nothing more powerful. I remember one of the most profound things
that ever happened to me when I was young, in the midst of my really
severe suffering with my illness, was when this person came to me and
said, "You know, I heard that it's been hard for you. I'm so sorry."
Then their eyes filled with tears. I knew my life mattered. I knew
that they cared about me. I felt strengthened to go on. They didn't
fix a thing about me; they were just real. Some of us feel being real
isn't enough. We think we are supposed to be an expert and have the
right words and the right answer. We ARE the right answer!
The Share Guide: Some people
believe that illness stems from emotional blocks or
feelings that haven't been dealt with. What are your thoughts on
Dr. Remen: Life is rarely as
simple and black and white as this. Many people
with emotional blocks do not become ill, and many people without
emotional issues do not recover from illness. There is a lot of
mystery in life. As much as people discuss this idea, the present
research does not firmly support this conclusion. There are some
poorly designed studies available, but definite research is still
needed. However, there is no question that stress and emotion can
exacerbate illness and make it more difficult for us to recover. That
and the way that we feel about ourselves and our illness may limit
our capacity to live fully and passionately.
The Share Guide: How much
acceptance do you think alternative or complementary
medicine has gained in regard to the treatment of life-threatening
Dr. Remen: Many people combine
alternative and conventional treatment (the new
field of Integrative Medicine) but very few people use alternative
treatments alone when their diagnosis is cancer.
The Share Guide: In Kitchen
Table Wisdom, you talk about learning in medical school
not to show care or emotions. Do you think this approach is changing
in medical schools yet?
Dr. Remen: It's changing
radically. We could be talking for hours just about
this subject. I am a full professor of clinical medicine at UCSF
School of Medicine, as well as the founder of The Institute for the
Study of Health and Illness at Commonweal.
The Share Guide: That's the
program for doctors, isn't it?
Dr. Remen: Yes, that's the one
for doctors. Eleven years ago I developed a
course, basically enabling first year medical students who are still
in the spirit of service and filled with the privilege of being able
to help other people. Many studies of medical students across the
country show that by the first year as doctors they are cynical,
burned out and depressed. There is something in the process of
medical education that kills the soul, if I may be so strong in
saying. So we devised a course that would enable them to strengthen
themselves and those around them, and to maintain the integrity of
medicine with compassion, harmlessness, altruism, service. I see
medicine as a spiritual path characterized by these traits. I started
an experiential discovery model transformational course for freshman
medical students at USCF 11 years ago. It has become the largest
elective course in the school. Most of the students are taking it.
Last year it was also taught at Yale Medical School and Dartmouth.
Next year it will be taught at 20 medical schools throughout the
The Share Guide: In addition to
being a professor, I know you are involved with the
organization Commonweal based in Marin County, California. What is
your current role there?
Dr. Remen: I am the Founder and
Director of the Institute for the Study of
Health & Illness at Commonweal, the Co-founder of the Commonweal
Cancer Help Program and the Medical Director of
The Share Guide: Because the
states there's a waiting list for
retreats, can you recommend any similar programs available to our
Dr. Remen: Since 1993,
Commonweal has trained others to do this sort of retreat
work. It is through our CCHP Tradecraft Training Retreats. I can
recommend the Tingsha Program in Pt. Reyes, the Smith Farm Program in
Washington, DC, and there are several others. People can call
Commonweal at (415) 868-0970 for this information.
The Share Guide: Did you ever
see the movie called The Doctor, with William
Dr. Remen: I have heard about
but I haven't seen it.
The Share Guide: It's this story
about a successful doctor who's very business-like
and abrupt with his patients. Then he is diagnosed with cancer and
has to become a patient himself. So there is a role reversal, and he
discovers his humanity as a result.
Dr. Remen: What we think is that
a doctor is a person that does not suffer. When
they suffer, then they understand. My experience is that doctors are
suffering greatly. Here in California, 50% chosen at random are
clinically depressed. One out of three practices is closing. What
that means is that five years from now we are going to have a major
doctor shortage. A lot of people are saying that they can't go on,
and they don't know why they went into medicine. They went into
medicine to help people.
The Share Guide: So they are
from the business of medicine. It's
the way of healing.
Dr. Remen: Right. We now have
economically driven system doing
which is intangible. Let's put it this way: the values of business
and the values of medicine are not compatible. In medicine, every
human life matters. Economically speaking though, it's supposed to be
the greatest good for the greatest number. These are in direct
contradiction to one another. It's very hard for the business people
to admit that. Every human being is worthy of the best we have. When
doctors are not supported in giving their best day after day, the
very best doctors leave the profession.
The Share Guide: Sounds like the
difference between the fast food restaurant
philosophy, "turn them out quick and all the same" vs. actually
sitting down to have a long, slow dining experience, going in
Dr. Remen: It's about being
nurtured. For example, you are nurtured
food. If you take the best chef in the world and you give them 10
minutes to put something on the table, they could throw something
together, but it's not what they are capable of. If they are forced
to do this day in and day out, their soul dies, because they are not
doing what they were born to do.
The Share Guide: I always spend
considerable time before each interview reading and
preparing, but this particular interview is basically about summing
up life and preparing for a transition. It's like summing up all 62
issues of The Share Guide and all the themes: once we've done it all,
we've exercised, eaten our vitamins, created a healthy lifestyle and
been nice to everybody, then what? We look at ourselves and wonder,
"Have we really lived life fully?"
Dr. Remen: Let me say something
interesting. There gets to be a place in chronic
illness where you realize that being ill is not going to stop you
from living well. That's where your freedom lies. Yes, I'd love to
see perfectly, I'd love to be able to run three miles. I can't do
those things. But the quality of my life is so much deeper than it
was when I was able to do those things. So there's a freedom to
transcend your illness, not by curing it necessarily, because a cure
is not available to everyone, but by making your life larger than it
is. Growth is possible for everyone, even if a cure is not.
more information about Dr. Rachel Remen visit her online at www.rachelremen.com.
For more information about Commonweal visit www.commonweal.org
or call (415) 868-0970.
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