Prelims

Susan J. Sample (University of Utah, USA)

Voices of Teenage Transplant Survivors

ISBN: 978-1-80043-519-3, eISBN: 978-1-80043-518-6

Publication date: 3 March 2021

Citation

Sample, S.J. (2021), "Prelims", Voices of Teenage Transplant Survivors, Emerald Publishing Limited, Leeds, pp. i-xiii. https://doi.org/10.1108/978-1-80043-518-620211030

Publisher

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Emerald Publishing Limited

Copyright © 2021 Susan J. Sample. Published under exclusive licence by Emerald Publishing Limited


Half Title Page

Voices of Teenage Transplant Survivors

Series Title

Dr Sample documents her work at a transplant survivors' summer camp, coaxing poetry from teens who don't read it, but who have plenty to say about their “miracle-like” experiences post-transplant. She describes brave young people whose aching drive toward supervivere, (above + to live) bursts forth in striking poetic images and metaphors that blend the surreal with the mundane. The chapter “Our Scars, Our Selves” unpacks an atypical adolescent identity formation in simple terms. JD writes of dying and returning to life three times, concluding that “My time is now, and I am here.” We can learn much about resilience from these teen-aged poets.

–Johanna Rian, PhD, Program Director, Dolores Jean Lavins Center for Humanities in Medicine, Mayo Clinic

The subtitle, “Miracle-Like,” well captures the spirit and achievement of Susan Sample's Voices of Teenage Transplant Survivors. Sample presents poems written by adolescents participating in poetry workshops at the summer Youth Transplant Camp program near Salt Lake City. In a series of short chapters, she carries the reader into the workshop process, introducing many of the young poets and placing their work in context. One young man writes of his anger, “It makes me want to hit / something. That's better / than someone.” A young woman with a liver transplant proudly affirms, “My scar is my scar. / It has personality. / It bubbles and dances when I laugh.” These poems clearly illustrate the power of poetry to heal and the indominable spirit of youth. Poems of insight, honesty, and wit you won't forget.

–Jack Coulehan, MD, Emeritus Professor of Family, Population, and Preventive Medicine and Senior Fellow of the Center for Medical Humanities, Compassionate Care, and Bioethics at Stony Brook University, USA

This book is essential reading for adolescents and young adults with chronic or terminal illness—and for their parents. The poems of young transplant survivors enable us to glimpse how it feels to live as though perpetually suspended, as if on borrowed time. Through her stories of these remarkable young people, Dr. Sample weaves a tapestry that illuminates distinctive, intimate concerns about identity, body image, belonging, hope, survival and mortality. In the words of one chapter title, “Mark This Beautiful.”

–Kimberly R. Myers, MA, PhD, Professor of Humanities and Medicine, Penn State College of Medicine, USA

It is increasingly recognized internationally that poetry can play a major supportive role both for patients of all ages as well as for their responsible health professionals. This inspirational book curated by Professor Susan Sample adds to this important message, with its insights through poetry by teenagers into their lives before and after heart, kidney, and liver transplants. This book should interest communities around the world concerned with organ replacement, whether young or older patients or their families, or responsible health professional staff and students.

–Donald RJ Singer MD, FRCP, Hippocrates Initiative for Poetry and Medicine [hippocrates-poetry.org]

Title Page

Voices of Teenage Transplant Survivors

Miracle-Like

Susan J. Sample

University of Utah, USA

United Kingdom – North America – Japan – India Malaysia – China

Copyright Page

Emerald Publishing Limited

Howard House, Wagon Lane, Bingley BD16 1WA, UK

First edition 2021

Copyright © 2021 Susan J. Sample Published under exclusive licence by Emerald Publishing Limited

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No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters' suitability and application and disclaims any warranties, express or implied, to their use.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-80043-519-3 (Print)

ISBN: 978-1-80043-518-6 (Online)

ISBN: 978-1-80043-520-9 (Epub)

Dedication

To all of the YTK campers, past and present, who have enriched my life beyond measure and to Pam whose support and friendship made this project possible

Acknowledgments

The making of this book is nearly as old as the Youth Transplant Kamp (YTK), which celebrated its 20th anniversary in 2020. I began offering poetry workshops to teenage campers in 2002 and continued through 2014, so my thanks extend back many years and encompass many individuals and organizations.

First and foremost, my deepest appreciation goes to all of the teenagers who participated in the writing sessions at YTK. Although I have included poetry written only during the first 6 years of the project, everyone whom I cajoled into writing deserves my thanks and admiration. I continue to learn from and be inspired by these courageous individuals. I also extend my heartfelt appreciation to parents who generously gave me permission to include writing by teens who have since died. I tried over the past year to contact as many former campers, parents, and/or copyright holders of the poetry as possible. I invite those whom I was not able to reach by mail, email, or telephone to contact me.

The poetry project was made possible initially with the support of the Utah Arts Council. The board of directors and arts education manager Jean Tokuda Irwin were strong proponents of the project. Special thanks go to Guy Lebeda, former literature coordinator, who offered me the opportunity to participate in the Utah Challenge America Project and encouraged my work with the teens long after the grant from the National Endowment for the Arts ended.

I also am indebted to the National Kidney Foundation of Utah and Idaho that established YTK and made it possible for children with different types of transplants to attend the expense-free camp where everyone is celebrated for what they can do. In addition to the board of directors, I want to thank Deen Vetterli, founder and CEO, and Richard Taylor, former development director, not only for granting me permission to work with teenage campers but for their belief in the importance of writing. My gratitude also goes to Ann Madsen, patient and community services director, for her administrative help every summer and again this past year. Mircea Divricean, president and CEO of Camp Kostopulos where YTK is held, insured that I always had time and space for the poetry workshops for which I am grateful.

Staff and faculty in Transplant Services at University of Utah Health also have been strong supporters of the project since its inception. Special thanks go to program manager Kim Phillips for helping educate me on organ transplantation and validating the significance of the teens' poetry. This past year, Kim helped me reconnect with patients, as did Cindy Terrell, Jacke Corbett, and Catarina Cosby at Utah Health, and Cecile Aguayo at Primary Children's Hospital (PCH). Former University child-life specialists Shannon Pay and Jill McFarland, and former PCH pediatric social worker Valerie Stevens each contributed to my understanding of posttransplant life and its unique challenges.

At the University of Utah health sciences center, I also extend my sincere gratitude to Jean Mueller, founder and retired director of the Educational Resource Development Council (ERDC). The philanthropic group awarded me a subvention grant that, due to family health situations, I had to return. However, their support motivated me to eventually return to the book project.

Among the many faculty and staff at the U School of Medicine who helped contribute to the growth of my project were Jay Jacobson, MD, professor emeritus of medical ethics and infectious diseases, and Neal Whitman, EdD, professor emeritus of family and preventive medicine. Both offered me teaching opportunities that became the first bridges between patients, physicians, trainees, and medical students, which led me to research and scholarship in narrative and medicine. I especially thank Jay for his mentorship in my education and professional development.

I am grateful to the many professional organizations that sponsored presentations about the YTK poetry project, including: Utah Humanities, Society for Transplant Workers, National Association for Poetry Therapy, and the Saratoga (CA) Foothill Club. Thanks also to Jeannene Barham, executive director of The Quest for the Gift of Life Foundation, for inviting teens to share their poetry at several public events.

At Emerald Publishing, I extend special thanks to senior publisher Paula Kennedy who helped navigate the book through the permission, editing, and design processes. I appreciate her sensitivity to the unique nature of the manuscript and the challenges it presented, as well as the assistance of Katy Mathers and other members of the editorial, legal, and design staff.

My former colleagues in the Public Affairs Office at the Utah health sciences center have been stalwart supporters of the YTK project, allowing me flexibility and encouraging my studies. I thank Chris Nelson, the late Mary Chachas, and especially Anne Brillinger for her professional knowledge and most importantly, her friendship. Brad Nelson, a former U of U hospital photographer, volunteered his time every summer to document the poetry workshops in beautiful candid portraits and provided moral support especially during the early years. Chris Carson, a Salt Lake City graphic designer, donated her talent to design the teens' first chapbook, which showcased the artistic value of the project, providing the teens with a new perspective on their writing and their selves.

So many writing friends deserve my appreciation for their suggestions and support. Among them are: Kristen Case and Kate Woodword who helped me nurture the project when it was just an aspiration; Lisa Bickmore, Kim Johnson, Paisley Rekdal, Natasha Sajé, and Jennifer Tonge who have provided expertise and friendship; and especially Cindy Fazzi whose determination, tenacity, and kindness inspire me.

In addition to the YTK teens, this book is dedicated to Pam Grant who was not only receptive to my initial idea of working with kidney transplant patients but also helped make the project possible through her work with the National Kidney Foundation of Utah and Idaho, and U of U Transplant Services. I am grateful for Pam's professional support in our many presentations on the YTK poetry project, but even more so for the personal friendship that has grown and deepened.

Lastly, I thank my family—my husband, Jack, and our daughters, Cassie and Molly—who allowed the YTK camp schedule to dictate our summer vacations for many years. To my daughters and my sister, Cari, I have valued your unflagging enthusiasm and reassurance. To Jack, I thank you for your patience and more.