The Northwest Narrative Medicine Project: A Monthly Series

Starting Tuesday, January 10, the Northwest Narrative Medicine Collaborative launches a monthly series with a focus on how stories – spoken, written, visual or performed — help shape our experience of healthcare. Facilitated by patients, writers, and healthcare professionals, each 1.5-hour session will share a unique perspective and include an interactive component for participants.

When:

7:00 PM – 8:30 PM

Second Tuesdays, January – June 2017 (Jan 10, Feb 14, Mar 14, Apr 11, May 9, Jun 13)

No RSVP required, but please arrive early. All sessions will begin promptly at 7:00 PM.

Where:

The Collaborative Life Sciences Building

2730 SW Moody Ave.

Portland, OR 97201

Room 3A003A [2nd Floor]

Accessible by MAX Orange Line, South Waterfront Streetcar, and multiple bus lines.

Parking: If you plan to drive, leave extra time to find neighborhood metered parking. CLSB garage parking is available for $4/hour (entrance where SW Meade meets SW Moody Ave)

Who:

We welcome all people interested in the creative exploration of the stories and experiences of health and illness. Healthcare providers, students, patients, caregivers, scholars, writers, artists, performers, and members of the public are encouraged to attend. The series is free and open to the public.

Be sure to bring paper and something to write with and feel free to contact us at nwnmc.pdx@gmail.com with questions or to request an accommodation.

Mom’s New Friend

By Anne Richardson

Part of processing my mother’s unfolding journey with Alzheimer’s has been to write poetry. This was the first poem where Alzheimer’s evolved as its own character and I allowed myself to address “her” directly. Even that took several drafts, as I originally kept myself at a distance (referring to myself as “daughter” not “I.”) Alzheimer’s can be frustrating, dis-empowering, and draining. Reading my poem released my bottled up story and gave back some of the power that “Alzy” has taken away from the relationship between my mother and I.

-Anne Richardson

 

At first Alzy stopped by for occasional visits.

She enjoyed reminiscing and distracting you from

the boredom of everyday retirement, widowhood, aging.

Then she became that new friend who invited herself
along on a trip to the grocery store.
Telling you what you need and discarding your list.

Soon she was inviting herself to dinner, staying for dessert,
watching TV into the wee hours.
She never offered to do the dishes.

Eventually she moved in and she became so familiar—
you forgot to tell your daughter about her.
And she said it was okay to take long naps in the afternoon,
those bills really didn’t need to be paid,
and why take that medication anyway.
She would go driving with you and give you bad directions.

When your daughter found out about Alzy
and asked about why she is taking up so much of your time
you got upset, so she just stopped asking.
And the three of you learn to dance together
in a new sort of relationship
that feels lonely.

Your daughter wonders what happened to your forgotten memories.
Did Alzy shred them?
Put them in recycling? Or maybe they are in the storage unit and
she’ll bring a few back some day.

Some moments you understand your new friend had taken over your life
but the moment passes. And Alzy?
She has days she is generous
and some days she is stingy in
sharing you.

Your daughter wants to ask Alzy if she has a daughter
who is waiting to be her unbidden friend, waiting for
30 years to pass
so she can sidle up
beside her with a case full of pastel
paints ready to cover her
history.

And when she visits with the two of you—it
feels lonely and
she wants to
tell
your unwelcome friend
to
go
away.

 

Polka Dot Pelvis

By Valerie Correa

 I wrote this poem about my bone biopsies for leukemia in one writing after being awoke from a dream in the middle of the night.  I had gone to a masseuse for a massage and was telling him what my “polka dot” scars where from.  It was healing to write about  repeated traumatic experiences and get it on the page and out of my body.  Then, presenting it at the conference was amazing.  It was my first experience sharing my poem in such a public forum.  My legs were shaking, not just from remembering my experience but also the charge from seeing people connect to my experience through my writing.  The validation of a human experience in such a visceral way was verbalized and felt by the audience.  It was life affirming in my healing.  Thank you for that opportunity and the conference was so enriching on so many levels.  I can’t wait for next year’s conference.  It was spectacular.

Polka dots burrowed into my skin
Remnants of intrusion, fear and pain
Memories stained in the skin
Scars
Stabbed in the back
A physical betrayal
Broken
Open with force to dig deep
To find answers
Will I live or die
I breathe
I hold still
The knife hits a nerve
Each time
Traveling down my leg
As if the pain
Is trying to escape down my leg
Out my foot
Charlie horse
My leg spasms
Knowing it can’t escape
I focus
I release,
I pray
Please protect me
Please let this be over soon
Get the information
Coded in my cells
Deep in my marrow
Killing me
And saving me
One more sample now she says
Take a breath
This is going to hurt
As if it hasn’t been excruciating already
I need to break off the bone
Shatter it
Disconnect it from me
That which lets me stand
Steady myself
Now I will crack it open
Break it
Take it
It is gone
To wait
For answers
Will I die
Will I live
This chard of bone
Will tell me
The body knows
But does the spirit?

Polka dot pelvis
Each circle
A mark
Of pain and fear
Splattered on my back
Ten times
Frozen in time
Holding my breath
For fate unknown

Two years past
No more added dots
But each hole
Created instability
I fall, I trip, I lose my balance
Each time I try to exert my past strength
The next day,
I ache, I am sore, I am stiff
Those polka dots remain
Remind me
I’m broken
And the pain has not left me
Polka dot pelvis
Shattered
And
Haunting memories
That wake me up
Out of a restful sleep
Alert me
I’m waiting for answers still
everyday

A message from Rita Charon

rita-charonGreetings from the Program in Narrative Medicine at Columbia University in New York! I so wish I could be with you all in Portland September 16-18 for the NWNM inaugural conference. I am assuming that there will be many more! Looking at the program, I see many of you–Louise Aronson, Elizabeth Lahti, Ellen Michaelson, among them–who’ve been with us at Narrative Medicine Workshops in New York from the very beginning of our work. We started Narrative Medicine at Columbia University in 2000, replacing what we had been calling Humanities and Medicine or Literature and Medicine because, as Elizabeth wrote in What Narrative Medicine Means to Me, it is so much more than simply reading or telling stories of illness and care. It is a philosophy and a practice of care that extends from the deepest interior of the clinician or the patient toward the work we do together. Through our practice, we come to realize what it means to be alive, to be with others, to suffer and to relieve suffering, to be human and mortal–all of it, within these clearings we can open for ourselves and one another.

Elizabeth’s blog, to which I’m responding, represents so eloquently exactly these realizations, as she moves from deathbed to deathbed of a Thanksgiving evening in the hospital, not facing a wall between the living and the dying but rather reaching out her hand gently to touch the veil of delicate silk that separates these two states. This sense of peace and change and endurance is called forth in the image on the conference’s website, the image of the clearing. It is one we, too, have been attracted to, for narrative medicine creates safety, protection, but yet a presence in the real, ordinary world of trees and moss and sky.

The combination of scholarly presentations, clinical observations, individual illness narratives, and artistic performances that I see on the conference agenda rings all the bells, as it were, of the transformations that take place in narrative medicine. My colleagues and I just had a first conference call with five other organizations in New York committed to healing through narrative work to discuss collaborative work we can do together toward racial justice in America. These are the narrative circles that we create–exceeding even health care issues toward seeking means to face conflict, overcome polarizations, and support justice. We see the same forces at work on the part of authors published in our on-line journal Intima and among our graduate students and alums from the Master of Science in Narrative Medicine graduate program at Columbia. Drawn from so many health professions–nursing, social work, veterinary medicine, psychoanalysis, physical therapy, integrative practices–as well as from creative backgrounds, these students and graduates and colleagues are transforming health care teams and bringing creativity into the heart of health care. Likewise, the narrative medicine work underway with our partners in Paris, in Tokyo, in Lisbon, in Jerusalem, among other sites, confirms our highest hopes that narrative clearings empower persons with a stake in effective and just health care. Remember what Roland Barthes said–“[N]arrative is international, transhistorical, transcultural; it is simply there, like life itself.” Through narrative, we cross boundaries between our sometimes warring health professions, cultural and language boundaries, and boundaries around the very concepts we hold about illness and health to together name the power of the care of the sick, to find relief from the isolation of illness or illness care, to discover the joy (remember, Richard Selzer called it a “black joy”) of helping others by witnessing suffering and illness.

We extend our hearts and minds to the thither coast, happy to have partners and friends joining in creating this field, extending its reach, originating new dimensions of its work. Although I cannot show you what it will look like yet, I want to announce that Oxford University Press is about to release the Columbia group’s new book, The Principles and Practice of Narrative Medicine. It has been a work of love, writing chapters together that not only lay out the philosophical and literary concepts that form the foundation of narrative medicine but also describe the unique teaching and clinical practice made possible through this work. Publication date is November 4, 2016 (four days before the–shudder–election). It was our contribution to the national and international conversation that you, now, in Portland are amplifying and deepening.

Thank you all for this tremendous celebration of an idea and launch of a new network of colleagues. What I’ve learned from the patients in my primary care practice is my North Star, guiding my own work toward being present, recognizing the other, humbly seeking for what might help. I agree that this work brings blessings all around–so that caregivers are graced with dignity, the care is tender and humble, and the sick are not alone.

With deep regard,

Rita Charon

 

 

Scholarship Stories

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When the NWNM Conference committee first met, one goal was clear from the beginning: make the conference accessible and affordable in order to welcome a diverse group.

We have awarded 10 scholarships. We would like to award more.

Please DONATE to support part or all of a scholarship. Click on can’t find the fund you are interested in supporting and write in NWNM Conference #25160

*Minimum donation is $10. Full Scholarship is $125.

“I am not sure I can explain why I want to go into into medicine. Maybe I wanted to be the oncologist my mother never met, the one who read the book she recommended; the one who listened to the time course of her symptoms and how she experienced illness, the one who cherished how she told her story and considered the way the shape of her illness impacted the shape and meaning of her life.  I hope a conference like this one gives me the opportunity to be that doctor.”

-Scholarship applicant

“While I am new to the practice of narrative medicine, I hope to use writing throughout my medical journey– as a processing tool, a means by which to give voice to those unheard, and as a reminder to myself and others of the intimate joys and challenges of being human. As I go through this medical journey, I hope that I will remember that for all I am going to learn about the human body, there is an infinite amount that I won’t know about my patients and how their bodies have experienced the world, what scars may be etched on or underneath their skin; that I will remember that the history of present illness can reach back generations and that it’s therefore going to take a lot more than a behavior change or a pill to treat it.”

-Scholarship applicant

 “I am passionate about mental health and eliminating the stigma that exists against mental illnesses. I am an active volunteer with NAMI, and an advocate for all who suffer from mental, developmental, and intellectual disabilities. I would like to be considered for a scholarship to this conference because I believe that I would benefit as a future medical professional. I cannot afford this conference myself because of my low-paying job and the expensive process of applying to medical school.”

-Scholarship applicant

“I am a creative intellectual, a Crohn’s Disease patient, and a yoga teacher who has explored my experiences through documentary film, narrative satire film, and writing. I am currently focused on cultivating compassion and connection with meaningful conversation and conscious living that empowers patients to embrace their stories and take healing into their own hands. Because my own mind-body-soul healing is largely because of my reflection of my own illness and wellness, I am eager to learn from others stories and impacts on their communities.”

-Scholarship applicant

Please DONATE to support part or all of a scholarship. Click on can’t find the fund you are interested in supporting and write in NWNM Conference #25160

*Minimum donation is $10. Full Scholarship is $125.

 

 

 

Lonely Expats

By Natalie Serber

Serber.bw-29 copy-1A friend and I were talking about cancer. (It pains me to write that sentence.) My friend has had a recent breast cancer diagnosis. (That sentence hurts too.) She was telling me about unexpected feelings that have showed up for her.  Aside from worry and fear and confusion, she wished, she said, “that she didn’t feel so different from everyone else.” I completely understood. When I first received my diagnosis of breast cancer four years ago I spent weeks in a daze, looking out at those who still lived in the land of the healthy. None of you people here at this coffee house, movie theater, grocery store, are like me, I thought.  Of course this outsider status was not reality based, who knows what burdens others carry, but at that time, I felt alone. And, I think my friend feels alone as well.

After some time passed, I began to look around at people in the park, the restaurant, the car beside me at the stoplight and think, have you had cancer? Statistically speaking a good percentage of them probably has dealt with some form of cancer. I wondered; what do you have to teach me?  When I tried to explain this lonely expatriate feeling to my family, they didn’t understand. In fact, I once begged off plans for dinner with friends because I just didn’t want to sit and stare and wonder who had been sick, how many people were likely to get sick, was I the only woman in the room with this tarantula growing inside her breast? When I told my husband I couldn’t bear it, he said, “Not everything is about cancer.” And you see, that’s the thing, early in a diagnosis everything is about the cancer.

Thank god for writing. Going to the page and getting the words outside of my body was essential to my psychic recovery. I had a team to see me through my physical recovery—surgical oncologist, oncologist, plastic surgeon, acupuncturist, physical therapist, yoga teacher—and they were all wonderful, I am so grateful, but they could not do the hard work of exorcising the fears from my body. To do the work of clearing worry from my axons and dendrites, the page was my best friend, the only place where I could say the unsayable. I’m afraid of dying. Why me and not ____________? (You fill in the blank, for me it was Ann Coulter. Not that I want her to be sick, it’s just, I’m much nicer than she is.) In some strange way, I wasn’t sick on the page.  I was clearly examining and trying, not to make sense, no, because there is no logic to a cancer diagnosis, but I was trying to fully witness my experience. Writing about it wasn’t the same as living it. Writing gave me distance. It gave me perspective. Did I feel less alone? Not always. But, I regained autonomy from the disease. And that is what I keep telling my friend will happen for her.  Should she write about her experience it may happen sooner.

Widening the Differential

4898344_3c2613fd13By Julia “Jay” Ruby, OHSU School of Medicine Class of 2018

My medical school orientation, like many other foreign experiences, was terrifying. Each day was packed with numbers, graphs, handshakes and competencies. Coffee became an all day occurrence, and the days blurred into one another. One thing stands out though. I remember the moment we were told about a new Narrative Medicine course: throughout our training, we would be required to reflect, in writing, about our medical school experiences, and share these reflections word for word with our classmates. Reflections? Writing? My ears perked up. As an undergraduate creative writing major, this was finally something that felt comfortable, familiar. But what I remember even more vividly was how varied my peers’ reactions were. Some, like me, were excited to have an avenue to expand beyond the dot phrases and summary statements of medical writing. We were excited to force ourselves to not only characterize a patient’s pain, but describe the invisible feelings in a room, the view of the sunrise from the VA skybridge, or the comforting quality of a therapy dog’s fur coat. Some of my classmates were less comfortable with this challenge. This also made sense to me. You don’t have to be a good writer to be a good doctor; in fact, you don’t even have to take a college English course. I had already been told that in medicine, brevity is beauty. Despite my initial excitement, I began to worry a little. How would this whole narrative medicine thing play out? Would some students dread the sessions, while others, like me, chomp at the bit for those two hours each month? Would sharing our writing be divisive or uniting?

The first few narrative medicine sessions were awkward. We sat in a room with a dozen other students, sometimes in silence, waiting for the next volunteer to share their reflection. Not knowing quite what was expected of us, the first few sessions were full of reflections that felt a little scripted, a little safe. But as the weeks went on, people began to go further. One of my classmates narrated a surgery from the perspective of the body part being operated on, which elicited a wave of chuckles throughout our classroom. Another student tearfully compared learning about a dying patient to her own experience of loss, followed by a long moment of solemn, soft silence. Narrative medicine became less of a requirement and more of a haven, a safe space where we could share what we might not feel comfortable sharing on the wards or in a lecture hall. I remember one classmate, who was previously skeptical about narrative medicine, tell me he had “drank the kool-aid,” which although a silly analogy, made me smile. Making ourselves vulnerable to each other in our sessions reflected the unique relationship patients and doctors cultivate: one where emotions and empathy are paramount. Having a space free of judgment or rules, a rarity in medical education, is something my peers and I have come to cherish and appreciate, regardless of our interest and experience with writing. Our shared stories have brought us closer to each other and our patients alike.

A Healing Relationship

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By Jeanette Leardi

In the quiet hours of a Sunday afternoon, I watched him sleeping peacefully in his hospital bed, the silence punctuated only by the soft, intermittent clicks of an I.V. machine dispensing medication into his arm. The setting would be ordinary enough, were it not for the fact that the 46-year-old man I was sitting with for several hours while his wife was running necessary errands was my own doctor.

I had been trying to reach him, my primary-care physician, by e-mail and pager for about a week. Not an emergency, but because I live alone, I was wrestling with Living Will issues. It was an unusually intense flu season, and I had fears of repeating the experience I had had the year before, during which time I had fainted in my home from dehydration and when I came to, crawled to the phone and called 911.

For the seven years before that time, I was my father’s caregiver, and after he died, I began to wonder who would take care of me if I were seriously ill, or at least assist me in seeing that my last wishes were carried out. Hence the need to talk with my doctor about a Living Will.

But he didn’t get back to me. That was very unlike him, given our relationship. He was my 85-year-old father’s primary-care physician as well, and he had seen me through many of my dad’s surgeries and hospitalizations when I would stay at the hospital alone, without respite, nearly round the clock for weeks at a time. There, I focused my energies on seeing to it that Dad was well taken care of, often intercepting errors in the making by overworked or sometimes incompetent or apathetic staff. My doctor was a huge support during those trying times, always honoring my needs, addressing my fears, and advocating for my father and me.

This young man knew me well, probably better than most of his patients, because we worked together so closely on Dad’s behalf. He often found me on the verge of burnout and comforted me, even letting me cry on his shoulder, literally, from time to time, when the stress was overwhelming. And although 15 years my junior, he often demonstrated a wisdom belying his age when helping me arrive at decisions concerning Dad’s treatment. It was clear that he cared for my father in more than a purely professional way. After one of Dad’s recoveries, he and his wife even came to a musical performance we gave. And when Dad died, they were very moved by my eulogy. In short, this doctor was also our friend.

So when I contacted his nursing staff and found out that he was seriously ill and in the hospital’s intensive care unit suffering from an as-yet-undiagnosed illness, I was stunned and dismayed beyond measure. I was frightened for him and couldn’t imagine what he and his wife were going through –– the doubts, the fears, the frustration –– as test after test proved negative. For he had always been a strapping guy, vigorous, athletic, the epitome of health.

But in another way, I knew exactly what the challenges were. And, with his and his wife’s permission, I visited him several times in the ICU and later in a regular room to offer my support in any way they might require. Back in that all-too-familiar setting, sitting at his bedside, I was confronted by painful memories of those not-long-before months of struggle.

But in the midst of this intense déjà vu was also a powerful sense of the surreal. How many patients ever get the chance to be in a similar situation? Here I was, helping my doctor from his recliner to his bed. Getting him water. Covering him with a blanket. Answering the phone. Just being there if he needed anything.

At one point during his nap, he slowly opened his eyes, orienting himself. When he saw me and remembered that I was sitting with him, he quietly said, “Thank you,” and closed his eyes. I’ll never be able to express what that response meant to me, because it was I who was so grateful for the opportunity to return in a minuscule way some of the care he gave to my father and continued to give to me.

During that afternoon we had a long, poignant talk about a lot of things, including Living Will issues. We got to know each other better as people outside of a professional relationship. A few times he expressed his admiration for my vigilance and commitment to my father’s care. With those words, I could feel my post-traumatic hospital memories easing into a place of mellow perspective. And as I listened to him talk about his experience with this illness, I knew this new understanding was informing him in some profound, spiritual ways, adding to his already great competence and compassion as a physician.

There are those who would say that we crossed a professional boundary that afternoon. I highly disagree. From a purely pragmatic standpoint, of course, one should never expect a physician to get as close to most of his or her patients. Besides, many patients wouldn’t want such a relationship. And that’s fine. But modern medicine has lost a lot of its healing power through an overemphasis on the emotional distance physicians are expected to have.

It wasn’t always like this. In fact, it wasn’t that long ago that country doctors would routinely pay social visits and eat meals with their patients’ families and attend their weddings and funerals. The mind-body paradigm proposed by René Descartes in the mid-17th century morphed into a mind-heart split by the early 20th century, thanks to many empirically based medical discoveries. But for thousands of years previously, and in many non-Western cultures today, such a dichotomy was and is considered an obstacle to the spiritual bond necessary in the healing process.

Today, the popularity of integrative medicine is driven by patients’ desires to be seen as whole human beings with beliefs, values, histories, goals, and dreams and to be treated in the context of a caring relationship. But they’re not the only ones who want to see a change in modern health care. Many physicians, too, are disillusioned and burned out because the “managed care” system of medical practice denies them adequate time and broader contact with the people they treat.

The wisest doctors I’ve known understand that the mind and heart lie not in two separate boxes but on a continuum; they believe each patient and physician should determine the optimal point of balance in their relationship.

I agree. Because, as more scientific studies in energy medicine, spirituality, and intentional healing are concluding, the most powerful, effective medicine is found in the connection between patient and healer –– the stories they share with each other and the ones they create together. And if you ask physicians, many would admit that some of their most accurate diagnoses and treatments have been inspired precisely by whatever deeper emotional motivation they feel and the intuitive and conscious knowledge they have of their patients’ lives, personalities, and needs.

Naturally, any doctor should know when feelings are clouding rather than illuminating judgment and thus should seek out and defer to outside consultation. I was completely confident that my doctor would act accordingly, should such a time arise.

All I know is that, on that Sunday afternoon, something important was happening for me and, I believe, for him. Something more than mere, temporary caregiving. Something profound, transforming, spiritual. The ancients had two words for it.

Healing. Health.

 

Jeanette Leardi is a NWNM Collaborative committee member. You can follow Jeanette on Twitter @jeanette_leardi. Her website is www.jeanetteleardi.com