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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.

Volume 3 Issue 2 is Now Available on Project MUSE

Please see the table of contents for Narrative Inquiry in Bioethics 

This issue contains a narrative symposium: The Many Faces of Moral Distress Among Clinicians, edited by Cynda Hylton Rushton and Renee Boss. This symposium highlights stories from Clinicians about moral distress faced in their work and work environments and how they handled it.These stories are the focus of four comentary articles by 

The issue also contains two research articles. The Content of Hope in Ambulatory Patients with Colon Cancer by Emily S. Beckman, Paul R. Helft, Alexia M. Torke.

Analyzing Reflective Narratives to Assess the Ethical Reasoning of Pediatric Residents by Margaret Moon, Holly A. Taylor, Erin L. McDonald, Mark T. Hughes, Mary Catherine Beach, Joseph A. Carrese

There is also a Case Study called, A Case of Deceptive Mastectomy, by Rebecca Volpe, Maria Baker, George F. Blackall, Gordon Kauffman, Michael J. Green

Don't forget:

Narrative Inquiry in Bioethics has a new website.

http://www.nibjournal.org/index.html

 

50% off all new journal subscriptions!

http://www.nibjournal.org/subscribe/index.html

End of the Tunnel

A story about living with the label of "disability". The symposium on that topic (in NIB 3.3) will be out in December of 2013. 

By M. Sophia Newman

Sleeping during a Norwegian summer can be nearly impossible. The country lies on the far northern edge of our titled, rotating planet. In summer, nightfall is meaningless: pink twilight can fade to pale gray night and reverse to peachy dawn within tow hours. Inside the Arctic Circle, even that brief twilight is absent--the sun is out continuously for nearly three months. Without sunset, the brain, which normally reacts to darkness like a bird with a blanket over its cage, cannot figure out when to sleep. It become easy to lie awake on the sofa, gazing at the sky.

Back home, on a dark night months before. I had been on another sofa with a handsome friend. Three days before, he'd asked me out. I'd been flattered. He was an advanced student in the martial arts school where we'd met, and I liked his bold generous laugh.

Three days later, I had started training in martial arts after surviving a violent attack, which had given me post-traumatic stress disorder (PTSD). I had shared my story to explain how victim-blaming can be as harmful as abuse, convincing the school to improve information on stigma in its self-defense curriculum. But I'd noticed my friend had been unsettled by my personal disclosures. Here on his sofa, I realized his fears weren't fully resolved. 

 To answer them felt easy. The traumatic violence was eight years in the past. My friend was a doctor, so there was no need to explain the symptoms: irritability, expectations of harm, inability to focus, sleeplessness. I merely said they were all past tense. I had gone from victim to survivor to quiet advocate, trading personal pain for social insights. 

"It's not that I've seen the light at the end of the tunnel," I told him. "It's that I've reached the end of the tunnel and set of running through fields of flowers in the sunshine."

"Hmm," he said, perhaps critiquing the metaphor's schamltzy quality. He paused, and then-as if working to believe me--said, "You are more jovial than most people with this problem."

"I've turned back into the person I was supposed to have been all along," I said.

"Hmm," he murmured, disbelieving. I could feel our date crash-landing.

I considered this my main disability: not my illness, but his disbelief. I felt my statements about my own well-being were as credible as anyone's. But my friend seemed to regard my trauma as a permanent fragility, despite my statements to the contrary. Perhaps he mislabeled my hard-won happiness as misguided, willful naivete. It didn't matter much--rather than the condition itself, it was his stigma that bound me. 

I worried over him until I went to Norway months later. The vacation, though, wasn't about fleeing him. I had come to see friends, and to run a half-marathon in the Midnight Sun Marathon festival. 

The race was in a beautiful town called Tromso.   The town sits on a small island surrounded a winding freshwater estuary, sheltered from the Arctic sea by a peninsula of lichen-covered mountains. The town is the largest this far north, but it is tiny. The island has room for stands of birch and open fields of thistle and Queen Anne's lace. Overhead, the polar summer sun flitted through a tight circular path, rather than its usual arc between horizons. 

On race day, we ran under a sunny late-night sky. Long-distance running demands almost nothing but persistence. Runners, no matter how nimble, can feel overwhelmed by raw exertion. A few miles into the first race of my life, I felt deep fatigue.

But it lifted when I remembered that this race proved how well I was. Earlier in my life, physical exertion had been a reliable way to elicit flashbacks, the ultra-vivid memories that characterize PTSD. This was a quirk of how my damaged brain reacted to biochemicals released during exercise. No clinician had ever been able to advise me, but I had used the fluke to heal--running until memories overwhelmed me, and then soothing myself, rewriting my perceptions of the past. It had worked. Now I could run until I was fatigued, not until I was frightened. My brain had heeled. 

Eight miles into the 13.1 mile race, I ran through a low underpass. Then, what I had said to my friend on his sofa suddenly became literal: I was running out the end of the tunnel and through a field of flowers in the clear sunshine. It wasn't a schmaltzy metaphor, but a reality so clear and profound-and silly-I began to laugh out loud. I smiled until I crossed the finish line just after midnight.

Later, I reconsidered my friend. The midnight sun is a phenomenon hard to believe. The idea that the sky could be consistently dark and then relentlessly light was rationally true but strange-feeling. To my friend, I was the same way. I had been all dark in illness, but all bright and sunny now. To him, it was unbelievable. 

He was a doctor, and I found his incapacity strange. But he had just passed through a terrible relationship with someone for whom mental illness was deeply disabling. Perhaps, he, too, was in his own endless darkness, where steady sunlight was a bewildering thought. 

Irrespective of my friend's errors, it was wrong to impose stigma on disabled people. It's even more wrong to insist a person remain stigmatized when the disability has already been resolved. The problem, in the end, was his inability to see my human qualities beyond my PTSD, me as I really was. 

Running in Tromso, I realized the misbelief was his problem, not mine. In my head, I wished him well. And far and away, across fields of wildflowers under that astonishing sun, I ran off towards my own life.

 

 

New Call for Stories

Narrative Symposium: Religion in Medical and Nursing Practice

 

Narrative Inquiry in Bioethics will publish an issue focused on stories about how healthcare providers integrate their faith into their practice. We are interested in the perspective of healthcare providers from diverse religious backgrounds. We want a broad range of stories that extend beyond traditional settings for integrating religion and clinical healthcare.

In writing your story, you may want to consider these questions:

• Have you ever prayed with or offered spiritual support to a patient? Why? How did it go?
• How have your religious convictions affected your practice of medicine or nursing?
• How has your clinical practice affected your religious development?
• Have you faced any problems involving peers, the law, chaplains, patients, or others, based on your integration of religion into clinical care?
• How does your institutional setting affect your integration of religion and medicine?
• How would you recommend that healthcare providers integrate their religious conviction into their practices?

You do not need to address each of these questions--write on the issues you think are most important to share with others. If you are not a writer, tell your story in your own words and our editorial staff will help you.

If you are interested in submitting a story we ask you first to submit a 300-word proposal-a short description of the story you want to tell. Inquiries or proposals should be sent to the editorial office via email: narrativebioethics@gmail.com.  We will give preference to story proposals received by September 16th of 2013.

We plan to publish 12 stories (4-10 double spaced pages or 800-2,000 words) on this topic. Some additional stories may be published as online-only supplemental material. We also publish 2-4 commentary articles that discuss the stories that are published in the journal. To see a finished symposium you may access Narrative Inquiry in Bioethics, volume 2, issue 1, on living organ donation for free on Project MUSE.

Volume 3 Issue 1 of Narrative Inquiry in Bioethics is now available

Please see the table of contents for Narrative Inquiry in Bioethics 

This issue contains a narrative symposium: Taking Bioethics Personally, edited by Tod Chambers. This symposium highlights stories from bioethicists about their own illnesses or the illnesses of family or friends.

The issue also contains two research articles;  The Protectors and the Protected: What Regulators and Researchers Can Learn from IRB Members and Subjects by Ann Freeman Cook, Helena Hoas, and Jane Clare Joyner and Reason for Hospital Admission: A Pilot Study Caomparing Patient Statements with Chart Reports by Zackary Berger, Anne Dembitzer, and Mary Catherine Beach.

There is also a case study by Erica K. Salter called, Should We Tell Annie? Preparing for Death at the Intersection of Parental Authority and Adolescent Autonomy.

Don't forget:

Narrative Inquiry in Bioethics has a new website.

 http://www.nibjournal.org/index.html

50% off all new journal subscriptions!

http://www.nibjournal.org/subscribe/index.html

My Son is Not a "Write-off"

Barbara MacArthur shares her story about parenting her ASD child in the 1970's. 

 

When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic: "Just one of those things," the doctors said. One told me he was "a write-off" and "Stop sacrificing yourself put him in an institution and forget him" 

Howard was a noisy, awkward child. Everything was slow--and fractions. I had to chop up a wooden playpen and nail the bars against the bedroom window because he would climb on the sil and push hard against the glass. Once when I picked him up quickly to save him from danger he head butted me and chipped my two front teeth. At 3 a.m. one morning Howard hit me in the eye with a metal bus to wake me up. I had to go to work with a black eye and a cracked nose. 

I always had to work. My husband never supported us and I did not know where he was. He left unexpectedly when I was five months pregnant. In 1973 we received an official letter to say he had died in Manchester. He had never remarried, but nothing was left except just enough to pay the burial expenses. I had managed to buy an old house with a dodgy roof, no bathroom and an outside toilet. It was all I could afford and it took me ages to get rid of the cockroaches, beetles and mice. I managed to carry out repairs myself until I saved enough to pay for proper repairs.

The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens. Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of good to the floor. Could you blame the staff for threatening to ban us? If the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: "Why don't you control that effing boy! Women like you shouldn't be allowed to have children. You should be sterilized." Even doctors did not seem to understand autism and no support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement. 

I am proud of my son for what he has achieved. He will always be autistic and considered by many as being 'eccentric' or a 'bit odd', but he is popular and has a tremendous sense of humor. Some years ago we signed on for computer courses. My son became so proficient that the tutors nicknamed him 'cyber-junkie.' We both lost education in our youth--me at 14 because my school was gutted by explosive incendiaries during WW2--my son because he was refused admission to any school until he was 10 because he could not speak until then. The Education Department wrote "the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education."

For 17 years I was full-time career for three people--my elderly parents and my son. My parents gave up their Council flat and lived with us. They died within a month of each other--both in their 90's, in our home, leaving just enough money to cover cremation expenses.

My son and I gained Computer Science qualifications. Howard graduated from University in 2003--Computer Science. Now I am nearly 87 and still Howard's only career. I enjoy time on my own. Go to bed late and watch a late-night film. Tonight as I write, he is in bed and I have just put out the rubbish. He helped earlier by emptying waste-paper baskets around the house, so it is teamwork. But he is often in his own world in his mind. I worry what will happen to Howard when I die. We have our own home and Howard would want to remain here. Howard loves his home and is happy here; it would break his heart to be moved. 

We survived despite the system--not because of it.