Guest Blogger: Brianna Barrett

When That Illness From Your 20’s Becomes a Lifelong Artistic Mission

Cancer survivor Brianna Barrett writes “After This Episode,” a short play about a young adult cancer survivor, to be played by a fellow cancer survivor at the NW Narrative Medicine Conference.

I want to change the way people think. Whether it’s books, movies, theater, music, or any other medium, the arts hold incredible power to shape societal views. There are a lot of stories we’ve heard before. If you’re looking for it, you’ll notice there are certain types of characters we see often enough that they become part of our accepted cultural narrative. In my own writing, it’s important to me to focus on the stories or characters that I don’t feel are necessarily getting a fair shake in mainstream media.

How I Got Here

I was diagnosed with cancer in my early 20s. One of the many things a person suddenly becomes aware of when diagnosed with cancer is how disappointingly few relatable depictions of the young adult cancer experience can be found in existing media. Cancer patients are often seen as fragile, sage-like characters who die leaving friends and family with some valuable life lessons. I’ll just say it: that doesn’t feel so warm and fuzzy when you’re the one who’s sick.

Bizarrely, depictions of young people who have actually lived though cancer and are now getting their lives back together are quite rare. As a person fighting cancer pretty early in life, you look at the stories out there and you start to feel like there aren’t a lot of blueprints for what you are supposed to do with your life after you get through treatment.

The long-lasting effects of being a survivor (physically, emotionally, financially) are often-overlooked subjects that are rich with the kind of drama perfectly well suited to theater or film. Not only that, but in not telling these stories we are overlooking a large and growing population of young people who share this experience. When we talk about diversity, and bringing more diverse perspectives into the world of arts and entertainment, there is a conversation to be had about how we depict people with chronic illnesses or people who might be differently abled. I’m not talking about the “look how hard some people have it” angle that is inspiring to people who don’t have to deal with the same problems. I’m talking about the stories we can all relate to: our friends who are hilarious and messy and complicated and face uncertainty and insecurity and occasional moments of levity like everyone does.

Hitting Close to Home

Both personally and professionally, I’m lucky to have had the opportunity to connect with a lot of young adult cancer survivors and hear a lot of important personal stories. This play was born out of dozens of intimate, thoughtful conversations I’ve had with fellow survivors from across the country. While the story is fictional, it’s certainly also informed the dynamics I noticed in my own life once I had enough distance to be able to reflect on everything I’d been through. Whether you personally are sick, or a friend is sick, or a family member is sick, everyone involved in a medical crisis is dealing with an inherently stressful situation and everyone copes with stress in their own ways. Not all of those ways match up and that can lead to friction or misunderstandings that can be hard to address. This is one of the themes I wanted to explore in writing this piece.

It is with all of the gratitude and admiration in the world that I get to say I’m collaborating on this project with someone who is almost eerily well-qualified for the job of portraying a cancer patient in a play written by a former cancer patient. Rae, the young cancer survivor in my play, will be played by Brianne Whitacre – a remarkably talented and delightfully uninhibited actress from Portland who actually lived in a patient housing apartment while receiving treatment for cancer in her 20s, much like the character she portrays in this play. We have these amazing moments in rehearsal where she’s all, “this is how I remember always having to put on my shoes while I was in treatment,” and it really adds this whole other layer of subtext to the show. The insight and honesty she is able to bring to this role is reason enough to register for the conference – not to mention the phenomenal work of Theresa Park (who plays her long-suffering older sister) and Melanie Meijer (who plays her cheery childhood best friend). I’m thrilled to have such a capable, compassionate group of women tackling this project with so much energy and heart. It will be a very special, very unique performance and you don’t want to miss it.

Guest Blogger: StoryCorps + OHSU

Screen Shot 2017-10-08 at 7.50.31 PMStoryCorps Legacy: Through the cancer journey with Josh

You’ve likely heard the compelling conversations produced by StoryCorps, the national nonprofit organization whose mission is to record, preserve, and share the stories of Americans from all backgrounds and beliefs. But did you know that StoryCorps has now partnered with OHSU to bring to life the stories of OHSU patients, caregivers, healthcare professionals, and volunteers?

During this year’s NWNM conference, Jessi Broberg and T Timbreza, employees in the OHSU Patient Experience department, will facilitate a workshop focusing on the healing power of storytelling through the mission of StoryCorps Legacy and their partnership with local and national healthcare organizations.

In addition, two StoryCorps recording sessions will be held during the conference. If you’re registered for the conference and might be interested in recording a StoryCorps interview on October 21 or 22, please send an email to nwnmc.pdx@gmail.com.

Below are a few words from Jessi and T.:

Grief. Elation. Surprise. Frustration. Optimism. Myriad emotions fill the hearts of those whose lives intersect with healthcare. Each of those individuals – patients, loved ones, care providers, and researchers alike – has a story to tell and the OHSU partnership with StoryCorps Legacy is an opportunity to do just that. Participating gives people the opportunity to reflect, in an open and safe space, on the things that are meaningful to them. It allows individuals like Josh Brenneman and his mom, April, to capture and preserve some of their experiences in an audio recording.

The youngest of five children, Josh was diagnosed with Ewings Sarcoma in 2004 at the age of four.  Now 17, he and his mom sat down and discussed this diagnosis and the impact it had on their lives and the community that rallied beside them. Listen to their story here.

This edited story is an example of the type of work we’re privileged to do at OHSU. We have the honor of being facilitators of and bearing witness to the powerful stories told during the 40-minute interviews. We believe in creating space for the experience of others, and that sharing stories that inspire and connect us are some of the greatest gifts we can give.

We hope you’ll join us during the conference as we share learnings and challenges in listening for the multiple stories within the audio recording, understanding the process of honoring the integrity of the story, and identifying the components that tell the most impactful story possible.

Guest Blogger: Marcy Cottrell Houle

Marcy Cottrell Houle is a professional wildlife biologist, national speaker, and award-winning author of four books. Her most recent book is The Gift of Caring. Houle will be a keynote speaker at the NW Narrative Medicine Conference, October 20-22, 2017.

A LETTER TO THOSE ATTENDING THE NW NARRATIVE MEDICINE CONFERENCE

Dear Friends:

Houle Author photo

Keynote Speaker: Marcy Houle

I am looking forward to meeting you on Oct. 21 when you attend the NW Narrative Medicine Conference!  Its theme is exciting and new, and will equip us all to become effective messengers on a very important mission:  improving the quality of life for our loved ones, for ourselves, and for those whose care is entrusted to us.

So how does “narrative” do that?

Narratives can be expressed in all sorts of ways. Through art, music, words. As an author, of course, I love words.  I see how even the simplest words, strung together, can build up images that have potency and can direct us into action.

For example, realtors have a phrase they routinely refer to.  Three words are used to promote prime real-estate: “Location. Location. Location.”

I offer that there are three words that doctors, nurses, social workers, therapists, patients, caregivers, and families could use as a guide in providing exceptional health care: “Communication. Communication. Communication.”

Unfortunately, as many of us know, that often is not the case.

Rather, what happens in discussions among providers and patients is this:  Both sides of the health care equation are speaking different languages – but with no interpreter. This “great divide” in dialogue often leaves patients and families frustrated and confused, and their busy, harried providers at a loss to understand why their patients don’t get what they’re saying

How are we to bridge this fissure in today’s too-often fragmented health care delivery system?  How can earnest providers give the kind of quality care they want to, and patients feel their needs and concerns are being heard?

Well, having lived through this scenario the hard way – seeing my wonderful aging parents fall through the cracks of the health care system over and over, and not knowing how to help them – I finally found something that worked.  I didn’t learn it all at once. And a lot of it only happened after my parents had passed away. But the lessons I discovered are powerful and have made a great difference in my life and that of many others.

I learned the best way to find a connection between us is to slip into each other’s shoes for a moment, and try to see life from another’s perspective.

The easiest and most vivid way to do that?  Sharing our stories.

Moreover, when these stories can get into other people’s hearts and minds, then people are moved to action.

The result?  These stories can make life better for others.

Sharing personal narratives has the power to improve quality of care by connecting physicians and providers and the families they care for by making inroads of understanding.  Stories can help people not feel alone, and they can also inspire positive action. 

The Gift of Caring: Saving Our Parents – and Ourselves – from the Perils of Modern Health Cares is the story I wrote after living through a 17 year journey of caring for my mother and father.  It is the narrative of the struggle we endured to try to ease their pain when they were suffering as they aged.  Through time, we saw health care at its lowest ebb … and also, at its best. Many times it was a battle – a battle that thousands upon thousands of families find themselves in, and not knowing where to turn.  Many times, people just give up.

I’m here to say: Don’t give up.  The Gift of Caring has another story running through it, too. Co-author, Elizabeth Eckstrom, MD, MPH, MACP, and professor of medicine at OHSU, tells a story, not of despair, but of hope.  As I learned, and we jointly explain, there is a different way to age! One of meaning, dignity, purpose, and greatly reduced suffering. This narrative tells of the strategies we can use – whether physicians, nurses, all kinds of providers, as well as seniors, families and caregivers. With the proper knowledge, as transmitted and actualized through stories, we have the opportunity to reduce much of the misery that older persons experience. 

I know that.  I have seen it.  And the thrilling thing?  From what we are hearing, these stories are affecting change.    They are calling people to action. And I suspect that’s why many of you are coming to this innovative and important conference — because you want to see changes to the health care system, and to promote high quality of care, for our patients, our loved ones and ourselves. On some intrinsic level, you understand that personal narratives and telling stories is a powerful way to begin that action. They pull us in.  They make us see another side to the story we may not have thought about before.  Most of all, they make us connect, as human beings. 

Isn’t that what it’s all about?

I know each of you is going to make a difference. 

Warmest wishes,

Marcy