How It All Began

Little Seeds that Grew Into ISHI programs

— by Rachel Naomi Remen, MD

Long before I became a physician I became a patient. When I was 15 years old I was diagnosed with Crohn’s disease and I have lived with this chronic illness for more than half a century. So early on, I became aware of aspects of illness that you can’t learn from a textbook, things you can only know through direct experience.

At 15, my surgeons told me that my life as I had dreamed it was over. Because of this disease I would have many surgeries and become an invalid. I remember the next ten years as a blur of despair and loneliness and anger. Dark times. But gradually I became aware that my disease had not just changed me physically. Weak though I was, something was growing in me, something wordless that was vital and alive and determined and, yes, strong. Something that was a response to the very disease that had stolen my physical health.

These were early days when most people did not have much awareness or sophistication about the inner world. So there were no words to put to this experience and no one to talk to about it. Even so, I began to wonder about it and I had lots of questions. Was something strong growing in other sick people too? Perhaps there was even some way to help it to grow. I began to hope that I could find a way to be whole even though I could not be well. Nothing my doctors told me had suggested this possibility. But when I tried to talk to them about this they looked at me with something close to pity. So I kept my ideas to myself but I could not let them go. 

At 20, against the advice of almost everyone, I began to study medicine and discovered that even here among professional colleagues no one talked about such things. As physicians we were focused on the physical body and our goal was cure. The patient’s experience of their illness was irrelevant, even distracting. Anything that could not be expressed in numbers was seen as unreal and unimportant.

Back in those days if you were a real professional you did not respond emotionally to the suffering around you. Doctors did not cry, but patients did, and because I was usually the only woman on the medical team my colleagues would often come to get me to deal with patients who became emotional. I went to offer comfort and discovered people were responding to their disease in ways as unique as their fingerprints. People with the same disease had very different stories. I became awed by these stories, by the many unsuspected strengths, the depths of love and devotion, the courage and heroism that disease evoked in the people we had labeled with only their diagnosis. There was something growing in people, strengths and capacities that we were not mobilizing or even supporting. We believed that if we could not cure people, we could not help them. We had sold ourselves and our patients far short.

There are words now for the sort of experience I had as an adolescent, and have discovered in so many others, words like “the will to live.” Searching for ways to collaborate with this common experience has become a focus of my career.

The will to live cannot be measured which puts it beyond the reach of science. Science defines life in its own ways but often life is larger than science. People are larger than science too. Many important things cannot be measured or even predicted but only experienced. So the Medicine of the future needs to be larger than its science as well.

The will to live changes our idea about our professional roles and what enables us to make a difference in people’s lives. It enables us make a difference even when our expertise cannot cure people. It opens up the possibility that medicine is an art as well as a science, and heals as well as cures.

Medicine has grown and deepened in the 45 years since I became a physician. It is becoming humbler and wiser and far more effective in helping people who are sick. Healing is finding its rightful place in Medicine as are the ways young people think about their roles as health professionals. 19 years ago at UCSF School of Medicine, I developed The Healer’s Art, a course for first year medical students, which is now taught at 70+ other medical schools. Every year more than a thousand students who take this course have an opportunity to write a personal mission statement and read it aloud to one another. Sometimes these young people write about learning the science of medicine and acquiring expertise but most of the time they write about something else… something closer to their idea of Medicine and the reasons why they have chosen this work in the first place. This mission statement dedicated to his future patients by a young man who hopes to become a surgeon is rather typical.

May you find in me the Mother of the World.
May my hands be a mother’s hands
May my heart be a mother’s heart.
May my response to your suffering
be a mother’s response to you suffering
May I sit with you in the dark
as a mother sits in the dark.
May you know through our relationship
that there is something in this world
that can be trusted.”

The ways in which we can strengthen the life in each other are simple and old and have great power. These are the sort of doctors that I had needed to find years ago when I first became ill. It has taken some time but they are here now.

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To visit Dr. Remen’s website, click here.