Storytelling and health care

When I was writing Pictures of You, an amazing thing happened. This boy appeared: ten-years-old, severely asthmatic and I resisted. The last thing I wanted to write about was asthma!

Although I am virtually fine now, I grew up with horrible asthma. I was in and out of ERs and hospitals, and deeply shamed about the whole experience. I never talked about it to anyone (if pressed, I said I had pleurisy or consumption, words culled from the books I read while everyone else was outside playing), I hid my inhalers or deliberately lost them, and even when I was seventeen and in the flush of first love, the only way I could tell my boyfriend why I had to sometimes vanish (to take my inhaler) was to write him a letter about my asthma and my shame and grief about it, and then have him burn it.

But I found the more I wrote about this young boy with terrible asthma, the better I felt. I began taking less and less medication and then nearly none at all, until I was sure I had healed my asthma. I hadn't, of course, but what I did heal, by giving my character compassion and love, was my own guilt, shame and grief about the disease. I started thinking more and more about how writing can heal us.

That's where Henry comes in. Henry Ehrlich is co-author of Asthma Allergies Children: a Parent’s Guide and author or co-author of a number of other books. He edits AsthmaAllergiesChildren.com. He is also a speechwriter and blogs occasionally about business for newgeography.com. Henry and I began having lots of incredible email conversations about asthma, among other things, and I asked Henry if he would write a guest blog for me about how storytelling can help give a narrative to illness and make it seem more manageable. Thanks, Henry!

Storytelling and Health Care

I’m not a doctor but I play one on the internet. I am co-author of a new book called Asthma Allergies Children: a Parent’s Guide, which is why I “met” Caroline. She wound up on my Amazon author’s page because of her upcoming book and the rest is history—or it will be at the end of next week when I post her wrenching reminiscence of her own battles with asthma on the website AsthmaAllergiesChildren.com, which I edit. When I saw that she has written a novel with asthma as a theme, I felt I had come full circle. If I know my co-authors, and believe me I do, all three of us are going to learn things about asthma from Caroline’s new book that we never knew before. The overlap between storytelling and medicine was part of our project from the beginning.

My co-authors, pediatric allergists Dr. Paul Ehrlich (my first cousin) and Dr. Larry Chiaramonte are both great storytellers, and they are also great clinical healers, a combination that frequently gets lost in the 11-minutes-and-out of contemporary medical practice. One of the things I insisted on as we wrote our book, and now in the website, was that we stay away from the medical journalese that permeates so much medical writing and carry every point with an anecdote, a metaphor, a joke—some element from the storyteller’s toolkit.

This was a natural with Dr. Ehrlich. I don’t know anything about biology or chemistry, but we got our voice from the same place: our fathers. His was a pediatrician and mine a teacher and author, but we heard the same stories about the old neighborhood and jokes growing up. Dr. Chiaramonte’s father was a barber at Yale, which led to a scholarship for Larry. Between the two of them, there are over 70 years of stories about seminal research, great characters in academic medicine, and thousands of children and anxious parents to draw on. Both love their patients. Both have the same fascination with the drama of an immune system gone wild that constitutes the basis of allergic medicine. Both have the investigative skills that are essential to taking a good medical history and finding the solution that eludes the harried general practitioner. It’s not very different ultimately from the kind of investigation that a good novelist often does. Every case is a mystery that needs to be solved. (I won’t name names, but I’m reading a book about a girl who gets pregnant by a certain author who could have been a superb diagnostician.) As we point out in the book, Sir Arthur Conan Doyle was a Dr. before he was a Sir, and the model for Sherlock Holmes was his professor Dr. Joseph Bell whose keen eye for detail almost passed for telepathy.

Does it work? Only the royalty checks will tell. But Dr. Lisa Sanders, author of Every Patient Tells a Story, and whose NY Times column Diagnosis inspired “House M.D” zeroed in on our approach: “It is full of the kind of great stories that teach both patients and doctors more than mere facts.” Couldn’t have said it better myself.