VOICES: Personal Stories from the Pages of NIB

VOICES: Personal Stories from the Pages of NIB is a publication created from the “narrative symposia” — the stories and commentaries published in Narrative Inquiry in Bioethics — that explore current issues in bioethics and health policy. This highly readable edition can be produced for sponsors to distribute to interest groups or for educational efforts.

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The first issue of VOICES centers on “Confronting Pediatric Brain Tumors” and features stories from parents and commentary from survivors, doctors, and advocates who have worked with this particular devastating illness. This publication examines the total experience of the journey with this disease.

"Deeply moving and fierce, with hope on every page. This is a publication to cherish and pull out again, and again ..." Terra Trevor, author and patient advocate

The Image in the Mirror

By Susan White Bowers

      

The image in the mirror shifted in and out of focus, appearing distorted, with undefined areas around the edges. I hardly recognized the seemingly blurred figure. My reaction to the reflection was one of uncertainty. Lately, I've had trouble recognizing myself. After a ninety-pound weight loss, I'm no longer sure who that person is in the mirror. 

What started out as “chubbiness” quickly spiraled into obesity, after I was sexually abused as a young child. Not able to confide in anyone about the abuse, nor comfort myself, I turned to food to soothe my fears and calm my anxieties. Eating allowed me to stuff down my angry feelings, guilt, shame and pain.

      

Being traumatized as a child made it hard for me when the time came to start grade school. I was afraid of everyone, so I ate more. It never seamed to matter what the kids at school said about my weight. I felt comfortable and safe in my oversized body.

     

As a teenager and on into adulthood, I used obesity as a psychological defense to maintain distance from everyone. Determined no one would hurt me again, I wore my weight as a concrete barrier to the outside world. At age nineteen and depressed, I sought psychotherapy to work through the abuse related fear, anger, guilt and shame. As a medical professional, I knew permanent weight loss would not occur until I uncovered the reasons for my emotional eating.

      

Year after year in therapy, I worked through the emotional issues that lead to my weight gain. Having come through the therapy to discover the challenges my parents faced, I was at last able to forgive them and move forward with my life. After that, I no longer needed the weight for protection. I no longer needed to suppress my angry feelings, as most of them began to melt away. It seemed natural that as I grew mentally healthier, I'd want to be physically healthier, so I contacted a doctor specializing in nutrition and began a monitored diet program.

      

Losing weight required a good deal of time, commitment and hard work. Early on, I became excited when I discovered new ways to change how I thought about food and what I ate. I spent hours researching how to plan, cook and eat healthy foods. Each day I exercised for thirty minutes. I'd waited so long to be the mentally and physically healthy person I'd always dreamed of being.

Every month I dropped five or six pounds until I had lost fifty pounds. In celebration of my accomplishment, my nutrition doctor played the piano, while he and his staff sang my favorite song. Knowing he cared that much encouraged me to continue my weight loss journey. When I reached the point I had to shop for new clothes because the ones I owned no longer fit, I became unsettled and anxiety crept in. Not understanding the exact source of my anxiety, I explored the intense feelings with my nutrition doctor and therapist.

      

I soon discovered that losing weight had become the new trauma in my life.  Suddenly I was labeled with a disease: obesity. There were new expectations from people and from myself. I wasn't prepared to respond to people's comments about how great I looked, nor the suppressed sexual feelings that resurfaced. Every new opportunity that arose seemed scary. Afraid too much time had passed, I found it hard to start doing the things I'd always wanted to do like wearing shorts, traveling, dating and falling in love.

     

Many years have passed since I first attempted weight loss. At the time, I packed up my large size clothes and saved them, just in case. Emotionally, I wasn't ready to handle the weight loss, and even suffered from a bout of anorexia for a short time.

     

I'm confident I'll be successful this time. After fourteen months of weight loss maintenance, I boxed up my large clothes and gave them away. Continued success at weight loss will require effort, planning and evaluation of my feelings to prevent sabotage. Adjusting to the new image in the mirror will be both hard and challenging at times, but I'm committed to my new journey. For the first time in my life, I have the support I need and the confidence in myself to finally embrace the person I've become both on the inside and on the outside. 

A Brain Tumor Parent’s Perspective on What Makes Good Bedside Manners

By Suzanne Leigh

Letting us know that we're not alone.

Having a child diagnosed with cancer is a wretched, isolating experience. We realize that our doctors are not our friends, but telling us that the medical team is sticking with us throughout this uncertain journey ahead is an empowering message when we are not at our most powerless. 

Showing us that you care about our child, too.

We know that you identify our child by her diagnosis, but we identify her as our daughter. Let us know that you understand our child and tell us something about her personality that will resonate with us. Talk to our child, rather than just to us, as much as feasible. 

Holding off on the scan 'show and tell'.

Some parents want to see the imaging of their child's tumor. I know I did--initially. But with recurrences, seeing evidence of the tumor that I was told would ultimately take my daughter's life was horrifying. Some doctors seemed eager to share the scans--perhaps because it gave them a reprieve from my crumpled, tear-stained face? Ask us first, rather than assume that we want to see it. 

Thinking twice about having junior doctors sit in on an emotional conversation. 

If you have devastating news to break, consider banning residents and fellows from the room, while we contend with the ramifications of what you have to say. When emotions are high and we are at our most vulnerable, we don't want to be politely scrutinized like lab rats--even when it means that those in training might lose out on a one-of-a-kind lesson in patient-doctor communications.

Be accessible by e-mail if you can't make the phone. 

We won't try to "friend" you on Facebook or e-mail you pictures of our cute dog, but some of our questions are best answered by you alone. If our e-mails are short, clear, and seemingly important, please respond, however briefly, even if it's just to acknowledge that we've been heard. When our messages are relayed verbally from nurse to nurse, by the time they reach you, we worry that you have missed the crux of our concern. 

Remembering our child, even if...

If our child is cured, we are bonded to you forever, because you were the one that treated her. If our child dies, we are bonded to you forever, because you were the one that tried to save her. Our relationship with you is paradoxically as intimate as it is distant; you are a member of our family and you are the stranger beside us. We know little about you--we don't the names of your children, what you like do outside of the hospital, where you live--but you've been there in those fist-pumping moments of glory when a scan has been clear, a tumor has been successfully resected or a drug has beaten a stubborn headache. And you've been there when the situation has been dire. You've witnessed us laugh and cheer and you've witnessed us sob. Remember our child; we will always remember you, probably with fondness. Even if our child has died, we recognize that while the disease ultimately triumphed, it was the treatments that failed-not you. 

Journey with WeCan

NIB 4.1 with a narrative symposium focused on Parenting Children with Pediatric Brain Tumors is coming out soon. Here is a story we couldn't include in the journal but wanted to share with our readers.

Story By Gary Painter

Our daughter was diagnosed with a brain tumor (glioblastoma multiforme) while we were on vacation in August 2005. As with all parents facing this horrible situation, we felt like were thrust into the front lines of battle for which we had no training. We relied on the doctors in that hospital to tell us what was the best course of action through initial brain surgery and recovery. When our daughter had recovered well enough to go home, we were recommended a protocol of treatment that may not have been in the best interest of her or our family, but at that time, we did not know what other options were available. Fortunately, our insurance company did not want to pay out of network and brought us to Children’s Hospital Los Angeles and the best neuro oncologist in the country. 
 

Shortly after arriving back home, our daughter required a shunt surgery to alleviate fluid build-up in the brain. While in ICU, we met Kathy Riley from WeCan.It's hard to put into words what it meant to speak to someone that knew what we were going through, and then could provide us with information to help us judge what were our options both within the medical world and outside. We then were able to connect to other families in our same situation.We spent time getting to know them at a wonderful family camp, and then walked with them in the hospital and clinic visits for the next 15 months. 

Unfortunately,our journey ended with the tragic death of our daughter. Fortunately, our support did not evaporate at that point. WeCan continued to provide a lifeline. Over the next two years, WeCan developed a bereavement program to help families like ours. Nothing can take away the pain of losing a child, but having a community with people provides an environment where healing can.

Volume 3 issue 3 is on Project MUSE

Please see table of contents for issue here.

This issue of Narrative Inquiry in Bioethics explores a series of bioethical topics through a narrative symposium, a case study, and two qualitative research articles.

What is the experience of living with the label of “disability”? The narrative symposium, edited by Naomi Sunderland and Jeffery Bishop, presents a collection of stories from authors with both visible and invisible “disabilities.” These authors share deeply personal accounts of how their lives are affected by their disabilities and the way society views their disabilities. This collection of stories is fairly unique insofar as it explores a wide range of conditions, often labeled as amputation, autism, blindness, brain injury, deafness, spastic cerebral palsy and other conditions. The collection of stories not only allows us to read about diverse experiences, but to identify some common themes, which are explored in commentary articles by: Elizabeth R. Schiltz; Lorna Hallahan; Nicole Matthews, Kathleen Ellem, and Lesley Chenoweth; and Jeffery Bishop, Rachelle Barina, and Devan Stahl.

How Do Deployed Health Care Providers Experience Moral Injury? Susanne W. Gibbons, Michaela Shafer, and Edward J. Hickling, and Gloria Ramsey address this question in their research article. The authors gathered narrative responses from a sample of recently deployed nurses and physicians that were analyzed help better understand individual perceptions of moral dilemmas that arise in combat. In the discussion section the authors draw out areas where healing efforts should be focused.

What are the perspectives of healthcare providers caring for patients with disorders of consciousness? The research article by Catherine Rodrigue, Richard Riopelle, James L. Bernat, and Eric Racine is based on their qualitative study involving healthcare providers with different backgrounds. They conclude that there is a need for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs.

What does a families’ request to “do everything” mean when the patient has no chance of survival? In his case study H. Rex Greene discusses this common request and how to help both patients and families in such cases. He draws on Buckman’s SPIKES format to help unearth the real needs of the family and resolve the dilemma in a way that respects all parties concerned.

For a list of current Calls for Stories and Author Guidelines, please visit www.nibjournal.org.