THE PATIENT WHO CHANGED MY LIFE Heather Tosteson, Phyllis Langton, and Joyce R. Lewis Editors
HEATHER TOSTESON
INVITATIONS TO INTERPRETATION
We hope this collection, The
Patient Who Changed My Life, will act as a quiet catalyst for constructive,
empathic conversation not only between healthcare professionals but also with
the larger group of which they too are part - all of us who need and are
profoundly affected by this care. We are, just look to your right or left,
legion - and astonishingly distinctive and diverse. The stories we share, to be
true, need to have a large, treasuring space, right at their core, for what is
unique, irreducible and so terrifyingly mortal in each of us. But just imagine,
a legion of these unique stories. Who
has time to hear them into speech? Who has time to receive them? But imagine as
well allegiance to - and through - these stories in all their particulars: the
world becomes more vivid, tender, quixotic, resonant, and we do too. But who
can afford the time? Truly, just look to your right or your left, who among us
can afford not to have it?
As a creative writer who has
worked a large of part of my professional life on communication in medicine and
public health, I am intrigued by what a powerful medium stories are for
establishing and repairing social trust. However, my work on professional
identity and social trust has also made me keenly aware that the stories we
share with our colleagues and those we share with patients are often quite
different, tellingly different.
And both types of stories are
quite different from the stories that, sitting safely, quietly at our desks,
puzzled or haunted, impelled by
something that hasn't a name just an emotional force to it, we have the need
and courage to share with ourselves. It is the audience for these stories, the ones that draw on the fullness of our
experience recollected in tranquility, that intrigues me most - and so does the
process through which we hear those stories into being: writing.
More Generous Voices, More
Flexible Roles
Jane Smiley observes in Thirteen
Ways of Looking at a Novel that "every
literary persona is more judicious than almost every author."She ascribes this to the genre
expectations built into stories, especially written stories, that our
narrators, whether they are wise, kind or intelligent are always expected to be
highly and objectively observant. In other words, they are responsible for
giving us a lens that is broad enough to take in the whole story. A larger
sensibility does show up, for most of us, in this reflective form of writing.
We benefit from the fullness of time and the ability to reread what we've
written, hear it, then speak
again out of the reality of that hearing. The point I want to make is that once
this larger voice is heard, not
only by ourselves but also by others, we can accept its invitation and enter
into the fuller social relations it permits us - ones that are less reactive
and more judicious, less defensive and more generous.
Listening in this way is a
complex social experience for we listen not only with self-interest but as
participants in broader social and existential conditions. That too is built
into the nature of story. Stories are inherently social. To read or listen to a
story, even our own, is to know ourselves to part of the world of which and to
which we speak, a world of unequal social roles and profound existential
equality. There is often a sense of surprise and relief in writing. We can feel
how that reflective, empathic process and the narrative voice we discover
through it (which is ours and not ours)
help us integrate our roles and relations, our raw experience and our mute
intentions, in ways that are more intricate and complex, more enduringly humane
and fluid than what our
conscious, categorical minds can possibly do.
Stories and Social Trust
I also invite us to consider the
role of stories in establishing social trust, especially in the healthcare
system. I don't mean those stories about patients shared only between
colleagues, or those stories about doctors shared only between patients, or
those stories told by a professional to a general public which are told from
position of a privileged role. I'm interested in stories that acknowledge the
value and inequality of roles and the radical equality of human experience told
to an audience that includes all participants and their sometimes jarring
points of view. I remember a screenwriter once saying, "I always give my
villains the best lines, it's the most effective way I know to make a powerful
story." I would add that the very best stories of all don't have villains,
just complex characters with very different views of the world - a difficult
reality that stories are designed to make tolerable.
When we enter a story, any story,
we receive a social invitation similar to what happens to our
self-understanding when we hear our own narrative voice. To draw on Jerome
Bruner, a story derives its value from verisimilitude, it's trueness to life.
We, as listeners, become a conscious part of that life which stories keep
returning us to, one that has difference at its core. It takes two to tango or
make love or make a story - and more, many more, to make cultures, nations,
religions, professions. That tension of perspectives is the engine of story
and, in our wisest stories, the resolutions don't diminish the differences in
points of view but do bring them into more healing patterns.
Real stories, good ones, aren't
parables or teaching moments, they are testimonies and celebrations of life in
all its complexity. They allow us to replay life and in the process provide us
with a shared social experience, the experience of the story itself. When we
relate to a story something deep within us comes into deep relation with
something in the story - its characters, its plot, its sensory details.
Something that rings true to us. And what we resonate with differs from that of
other readers. Like life, we can share an experience and come out with very
different interpretations, very different realities. Stories provide us as
groups with an invitation to interpretation, a safe way of sharing those
differences. A good story has at least as many interpretations as it has
characters - and readers or listeners.
Stories teach us that it is
quintessentially human to identify - and disidentify - with others and to
resonate most with the story (its complex polyphony of voices) as a whole.
Creating our stories (even memoir) and experiencing the stories of those around
us gets us somewhere that analyzing stories doesn't. For a very simple reason,
our analytic mind can't make stories, it can only dissect them. But it is that
part of us that makes stories, rejoices in them as the valuable mysteries they
are, that continually reintroduces the radical equality of care, real care,
into healthcare. Care that takes two, care that works both ways.
How to Read This Collection
We see this collection as beginning
a conversation with that larger us, those who have or will have need of health
care. We invite you if you are a professional to read these stories from the
perspective of the recipients of care first. If you are not a health
professional, we invite you to try and stand in the narrrators' shoes first, to
look through their lenses. Is this the world you know? If not, how does it
differ? How do your own stories of care or the lack of care change if viewed
from this perspective? What new stories of your own experience rise in
response?
The writings in this collection
fell quite naturally into the categories presented here: Resonance, Boundaries,
Burnout, Competence & Compassion, and Changing Places. By resonance, we
don't mean identifying with another, rather holding gently and mysteriously in
imagination someone who is not us, accepting the life-giving permeability of
our interior world which is, in ways we can't understand, both uniquely our own
and also one with the world around us. A reality that professional roles
sometimes feel designed to deny.The writings in the second section, Boundaries,
more explicitly explore the dynamic intersections of role and psychological
identification. When does our capacity to identify with someone in the apposite
role of patient clarify and when does it distort? How does our choice to stay
within the boundaries of role or to abridge them affect the quality of care we
give.
The stories in the section,
Burnout, are, in their own ways, even more concerned with boundaries than the
stories in the preceding section. What happens to our capacity to care when,
for self-preservation, we reject permeability and respond to those we interact
with from a position of radical, irreconcilable otherness - from social power
(and powerlessness) that knows itself only as exhaustion.
Many of the selections in the
first three sections were written by nurses, which makes sense because nurses'
experience is more intimate and contiguous with that of patients and their
activities make them more consciously concerned with the emotional reality of
care. The stories in Competence & Compassion, both written by physicians,
describe different sides of the tension many physicians feel between the need
to meet the rigorous professional demand for technical competence and the core
human demand, the social bond of medicine, to provide genuine compassion. In
the final section, both a nurse and a physician explore the experience of
changing places in the healthcare system, either through illness of intimate
loss.
If you find these stories
interesting we invite you to share them
with colleagues, healthcare providers, and friends as invitations to
interpretation.
If you find a story rising in
you in response, we invite you to write it
imagining an audience of colleagues and patients and friends and experiencing
yourself, just as you are, as the embodiment of that larger audience. (For
those ofyou who might want to
write but are hesitant, you might use the story guidelines in our research
project Do No Harm as a starting point.)
We see this web anthology as a
continuing, expanding conversation and remain open to further submissions in all these categories. Send them to
patient@universaltable.org
If, after reading, you want to
support our efforts financially so we can
continue to offer free access web anthologies, consider buying of our books,
which you can browse through at our Wising Up Library, or a photo from our
Wising Up Gallery.
