Negotiating the Emotional Challenges

of Conducting Deeply Personal

Research in Health 1st Edition
Alexandra "Xan" C.H. Nowakowski
Visit to download the full and correct content document:
https://textbookfull.com/product/negotiating-the-emotional-challenges-of-conducting-d
eeply-personal-research-in-health-1st-edition-alexandra-xan-c-h-nowakowski/
More products digital (pdf, epub, mobi) instant
download maybe you interests ...

Conducting Research in Psychology Measuring the Weight

of Smoke 5th Edition Brett W. Pelham

https://textbookfull.com/product/conducting-research-in-
psychology-measuring-the-weight-of-smoke-5th-edition-brett-w-
pelham/

The Economics of Artificial Intelligence: Health Care

Challenges (National Bureau of Economic Research
Conference Report) 1st Edition Ajay Agrawal

https://textbookfull.com/product/the-economics-of-artificial-
intelligence-health-care-challenges-national-bureau-of-economic-
research-conference-report-1st-edition-ajay-agrawal/

Designing, Conducting, and Publishing Quality Research

in Mathematics Education Keith R. Leatham

https://textbookfull.com/product/designing-conducting-and-
publishing-quality-research-in-mathematics-education-keith-r-
leatham/

Educational research planning conducting and evaluating

quantitative and qualitative research fourth edition
Creswell

https://textbookfull.com/product/educational-research-planning-
conducting-and-evaluating-quantitative-and-qualitative-research-
fourth-edition-creswell/
Designing and Conducting Mixed Methods Research 3rd
Edition John W. Creswell

https://textbookfull.com/product/designing-and-conducting-mixed-
methods-research-3rd-edition-john-w-creswell/

Conducting Action Research to Evaluate Your School

Library 1st Edition Judith A. Sykes

https://textbookfull.com/product/conducting-action-research-to-
evaluate-your-school-library-1st-edition-judith-a-sykes/

Emotional and Cognitive Overload: Consequences and

Challenges of Information Technologies Anne-Francoise
Rutkowski

https://textbookfull.com/product/emotional-and-cognitive-
overload-consequences-and-challenges-of-information-technologies-
anne-francoise-rutkowski/

Contemporary Developments in Entrepreneurial Finance:

An Academic and Policy Lens on the Status-Quo,
Challenges and Trends Alexandra Moritz

https://textbookfull.com/product/contemporary-developments-in-
entrepreneurial-finance-an-academic-and-policy-lens-on-the-
status-quo-challenges-and-trends-alexandra-moritz/

Research in Deaf Education: Contexts, Challenges, and

Considerations 1st Edition Stephanie Cawthon

https://textbookfull.com/product/research-in-deaf-education-
contexts-challenges-and-considerations-1st-edition-stephanie-
cawthon/
 Negotiating the
Emotional Challenges
of Conducting Deeply
Personal Research in
Health

Public health researchers and clinicians regularly work with people who have
suffered physical and mental trauma. Knowing how to conduct a study or
treat a patient while navigating deep emotional issues requires special skills
and overall awareness of how trauma can impact the process and outcome of
those participating in research and/or receiving health care.
This book presents a diverse array of case examples from scholars of
health-related topics, focusing on biographical narratives as a window into
understanding key needs in trauma-informed scholarship and medicine.
Exploring stories from people of varied backgrounds, experiences, and con-
texts can help professionals within and beyond the academic research and
clinical care spheres create rewarding experiences for patients.
Negotiating the Emotional Challenges of Conducting Deeply Personal
Research in Health will be of interest to public health practitioners, educators,
and researchers as well as students.

Alexandra “Xan” C.H. Nowakowski, PhD, MPH, is an Assistant Professor

at the Florida State University College of Medicine, and affiliate faculty in
Sociology. Dr. Nowakowski’s research and other professional activities focus
on the experience and management of chronic conditions, as well as disparities
in the origins and outcomes of different health states. Dr. Nowakowski holds
PhD and MS degrees in Medical Sociology from Florida State University,
an MPH in Health Systems and Policy from Rutgers University, and a BA in
Political Science from Columbia University.

J.E. Sumerau, PhD, is an Assistant Professor of Sociology at the University

of Tampa. Dr. Sumerau’s research and other professional activities focus on
relationships between gender, sexualities, religion, and health in the historical
and interpersonal experiences of sexual, gender, and religious minorities. Dr.
Sumerau holds PhD and MS degrees in Social Psychology from Florida State
University, and a BA in Political Science from Augusta University.
 Negotiating the
Emotional Challenges
of Conducting Deeply
Personal Research in
Health

Edited by
Alexandra “Xan” C.H. Nowakowski
J.E. Sumerau
First published 2018
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN, UK

and by Routledge
711 Third Avenue, New York, NY 10017, USA

Routledge is an imprint of the Taylor & Francis Group, an informa business

© 2018 Taylor & Francis Group

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by
any electronic, mechanical, or other means, now known or hereafter invented, including photocopying
and recording, or in any information storage or retrieval system, without permission in writing from
the publishers.

Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are
used only for identification and explanation without intent to infringe.

British Library Cataloguing in Publication Data

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

ISBN: 978-1-4987-4779-0 (hbk)

ISBN: 978-1-315-15206-6 (ebk)

Publisher’s Note
The publisher accepts responsibility for any inconsistencies that may have arisen during the conversion
of this book from journal articles to book chapters, namely the possible inclusion of journal terminology.

Disclaimer
Every effort has been made to contact copyright holders for their permission to reprint material in this
book. The publishers would be grateful to hear from any copyright holder who is not here acknowledged
and will undertake to rectify any errors or omissions in future editions of this book.
Dedication

To Nancy Hayes and Richard Nowakowski, the original paradox,

for demonstrating that all good science has a story behind it.
Contents

Preface ix
Acknowledgments xvii
Editors xix
Contributors xxi

PART I
Rewriting the life course

1 Death check: Doing life and research with chronic autoimmune disease 3
ALEXANDRA “XAN” C.H. NOWAKOWSKI

2 Not quite one of you: Testimony of a wayward “survivor” sociologist 15

TRACY B. CITERONI

3 The day that changed my life: Reflections on becoming a caregiver 27

ANDREA N. HUNT

PART II
Revising institutional logics

4 No trespassing: A cop negotiating personal, organizational, and

community well-being in academia 39
JOSE TORRES

5 Reflections on rehab: Navigating the disparate system of

substance abuse treatment 53
JESSICA PFAFFENDORF

6 From person to patient and back again 65

ANGELA L. WADSWORTH
viii Contents

7 Finding my place in sociology: Questioning societal standards 75

KAREN GLUMM

PART III
Rejecting stigmatization

8 Going “there” and being “there”: Notes on discreditable identity and

stigma in peer suicide loss research 87
TANETTA ANDERSSON

9 Neither queer nor there: Becoming a raging lesbian scholar 103

SIMONE KOLYSH

10 But how does that make you feel? Racism and emotion management 117
DAVID SPRINGER

11 Navigating genderqueer existence within and beyond the academy 125

LAIN A.B. MATHERS

PART IV
Redirecting trauma

12 Trauma, tears, and transformation: Living and working

after surviving a tornado 137
ARIANE PROHASKA

13 I see monsters: The role of rape in my personal, professional,

and political life 147
J.E. SUMERAU

14 Black, queer, and beaten: On the trauma of graduate school 159

ERIC ANTHONY GROLLMAN

15 Reflections on the power of trauma-informed health research:

An example from the editors 173
ALEXANDRA “XAN” C.H. NOWAKOWSKI AND J.E. SUMERAU

Index 177
Preface

Few teaching techniques generate as much emotion, enthusiasm, or engage-

ment as the use of personal stories.
Stories about where we come from, how we became scholars and research-
ers, what we observe in studies of this or that population, or who we are
in relation to students create opportunities for transforming the materials
of a classroom into the everyday lives of the people we teach (Leavy 2015;
Sumerau 2017). Stories about when we notice scholarly findings in media,
personal relationships, and our own career paths resonate with students seek-
ing to make sense of themselves and the world around them. Stories about
aspects of our past, mentors who shaped our lives, and traumatic moments
that made us reevaluate the world we live in inspire students experiencing
similar life events, tensions, and conflicts in their own lives. As we have noted
elsewhere (Nowakowski and Sumerau 2015), such stories can help educators
personalize abstract ideas in the ways that generate emotional and intellectual
connections for students.
On the surface, this observation is not surprising considering the bulk
of social scientific literature that demonstrates the importance of emotions
to learning, thinking, self-development, career formation, identity creation,
and many other aspects of life that students are working through while attend-
ing our classes (Kleinman 2007). Since nearly every student knows some-
one who—insert experience here—or feels—insert emotion here—about any
given topic, or both, personalized examples inspire spirited discussions and
disagreements capable of pulling the research out of dusty books and reach-
ing into the hearts of each student. Although people carry a wide variety of
personal emotional experiences, assumptions, and interpretations through-
out their lives, almost everyone can agree that as feminist scholars have long
argued (Kleinman 2007), “the personal” is both politically relevant and a key
access point for making sense of the rest of the world.
Despite the importance of personal and emotional experiences in the shap-
ing of people, ideas, scientific findings, religious concerns, and other aspects
of selfhood, contemporary academic norms often downplay or entirely erase
the personal aspects of researchers, teachers, methodological preferences,
and other types of scholarly work and experience (Collins 2005). Rather than
x Preface
embracing the potential of connecting to students and the broader public
on personal terms, academic norms often seek to establish a detached, cold
façade that relies upon the assertion of authority rather than the integration
of academic knowledge and personal experience (Kleinman 2007). Students
in graduate training programs are often taught they must leave behind their
personal feelings and aspirations in order to successfully become respectable
academics and objective sources of knowledge.
At the same time, the emergence of academic blogs and edited collections
that focus on the experiences of people working as professors, research assis-
tants, teachers, and graduate students continue to reveal problems with this
objective mythology (De Welde, Stepnick, and Pasque 2014). Rather than the
detached façade suggested by graduate programs and many academic com-
mentators, such work reveals that the fantasy of objectivity often merely hides
the very real marginalization, stigma, and struggles of people from margin-
alized personal backgrounds (see also Collins 2005). Further, such studies
reveal the ways personal expectations, preferences, and bias influence all
aspects of academic life, work, and experience the same way they influence
people beyond academic settings. While many academics continue to cling
to the myth of objectivity, especially those who benefit personally from this
myth, others increasingly speak out and fight back against such logic in favor
of academic efforts that admit, explore, and embrace the diversity of people’s
personal, emotional, and intellectual experiences.
This is the path we take in this volume.
Because we are invested in the ways scholars utilize personal and emo-
tional experiences in their research, teaching, and advocacy, we choose to
feature essays from people whose social and professional backgrounds do
not match the conditions required for adopting the myth of objectivity. Since
such mythology is predicated upon belief in an obdurate truth or reality that
was created, shaped, and sanctified from the Enlightenment period to pre-
sent by white, cisgender, class-privileged, heterosexual men, it is quite easy to
see—as black (Collins 2005), queer (Warner 1999), and feminist (Kleinman
2007) scholars have noted—the ways that many scientific and other academic
assumptions fail to empirically make sense to, for example, cisgender lesbian
women of color from the working class, transgender bisexual men raised in
poverty, or any other group who does not share the personal background that
objective views of the world are founded upon in the first place.
In this volume, each author’s personal background violates at least one
of the assumptions of such academic traditions. As such, their experiences
within and beyond the academy reveal the nuances diverse personal back-
grounds often reveal in the existing assumptions and norms within the acad-
emy. By centering on the experiences of people who do not fit into academic
norms and expectations in terms of personal background and totality of
socio-demographic factors, we seek to, as black feminist scholars have long
suggested (Collins 2005), demonstrate the ways in which diversity in academic
voices may better prepare academic institutions to make sense of and respond
 Preface xi
to a diverse society. To this end, every essay in this volume focuses on the ways
social factors—including but not limited to race, class, gender, sexuality, reli-
gion, and health—play out in the experiences and efforts of scholars.
Although rarely mentioned in scholarships concerning the academy,
beliefs in objective mythologies also rely upon the assumption that one can
step back from any experience to analyze it in a detached and passionless
manner (Kleinman 2007). As others have noted in relation to gender, sex-
uality, and sexual violence (Martin 2005), this means that academic norms
expect either to only allow researchers who have never personally experienced
trauma, discrimination, or marginalization that may arise in their studies or
to accomplish the impossible task of facing one’s trauma without any emo-
tional reaction to that experience. In either case, this assumption encourages
impersonal research and teaching methods at the expense of the health and
well-being of scholars who have experienced the things we study. Put another
way, a detached view of an experience is unlikely to be able to adequately
gather the ways people experience the phenomena as an active event in their
lives, and the devaluation of research that seeks to engage such experiences
renders scholars with such experiences in an untenable position academically,
career wise, and in relation to such topics.
In this volume, each author demonstrates the ways personal attachments to
given experiences shed light upon the phenomena that may be missed by those
who lack intimate familiarity with the situations and patterns in question (see
also hooks 1994). At the same time, our authors discuss roadblocks and hur-
dles they face in the academy when others seek to uphold notions of detach-
ment and rationality predicated upon a lack of experience with many of the
topics they study, and the ways such experiences limit their career paths and
impact their physical and mental health experiences. In so doing, each author
notes the ways that emphasizing personal and emotional connections to aca-
demic subject matter both buffers negative mental and physical health expe-
riences and transforms these experiences into concrete, passionate examples
for students and colleagues. To this end, every essay in this volume highlights
the ways that personal and emotional experiences with common academic
subjects and broader social experiences may extend and expand the under-
standing of these subjects and interventions created to manage such subjects.
This volume grew out of attempts to begin grappling with these questions
through panels at academic conferences in 2014. At the annual Southern
Sociological Society conference that year, we organized two panels, titled
“Write Where It Hurts,” encouraging people to share and discuss the emotional
and personal experiences that gave rise to their current teaching, research, and
advocacy efforts. At that time, we expected to meet a few interested scholars
and begin a series of conversations that could grow over time. This, however,
is not what happened. Instead, we received a much larger response, both at
the conference and in e-mail correspondence before and after the conference,
than we envisioned, which led us to begin hosting regular panels and online
discussions with others grappling with the same questions.
xii Preface
The following year, responding to increasing numbers of interested parties
and ongoing conversations online, we established a blog with another col-
league called Write Where It Hurts (see www.writewhereithurts.net), and social
media sites to serve as places for conversation about the personal and emo-
tional aspects of teaching, research, academic service, and advocacy efforts
within and beyond traditional academic settings. Since this time, we have
watched the blog consistently grow with people regularly checking new posts
from academics about their personal and emotional experiences from more
than 30 countries and every state in the United States. Our social media sites
have also consistently grown in terms of readership and attention from other
academics and academic organizations. Further, we have published works in
academic journals, including Teaching Sociology and PLAID: People Living
with and Inspired by Diabetes, discussing these topics, providing resources to
other academics in health and social science-related fields, and advocating for
personal and emotion-based strategies of teaching, learning, researching, and
advocating for students and the broader public.
This volume thus represents the next stage in the evolution of our ongoing
project to promote and encourage discussion of the personal and emotional
aspects of teaching, research, service, and advocacy within and beyond the
academy. Incarnated as the “Write Where It Hurts” project to highlight the
importance of emotionally and personally difficult experiences in the fashion-
ing of effective academic and applied strategies for managing social problems,
personal transformations, and societal inequalities, this volume as well as the
other components of the project builds upon long-standing recognition of
the importance of creating spaces for marginalized and alternative ways of
thinking, writing, and expression, and the ways the creation of such spaces
may facilitate broader social and political changes. To this end, every essay in
this volume goes beyond a recitation and analysis of personal and emotional
experiences to further offer suggestions for improving mental and physical
health, social and political policy, and personal and emotional experiential
outcomes.
Through the voices captured in this collection, we are able to address a
wide variety of questions about mental and physical health, diversity within
and beyond the academy, and the role of emotions in teaching, research, and
advocacy. In fact, the answers provided by our authors insist that academics
must become better at facing issues including but not limited to

• Why do some academics cling to myths of objectivity increasingly

revealed to be physically and mentally harmful for others?
• How do scholars—especially those from marginalized backgrounds—
manage attempts to depersonalize and rationalize their own lived
experiences?
• What are the benefits and consequences for scholars who defy academic
norms by engaging in personal and emotional strategies of teaching,
research, and advocacy?
 Preface xiii
• What insights about assumptions and norms related to various academic
and public policy issues might be gained from embracing personal experi-
ences, emotional reactions, and diverse perspectives?
• Finally, and perhaps a fundamental question for the academy going for-
ward, how can our institutions accomplish the mental and physical health
improvements and increasing diversity they regularly promise to be pur-
suing without embracing and engaging with the experiences of people
from diverse backgrounds, sharing varied personal experiences, and expe-
riencing emotional reactions created by existing academic assumptions
and norms?

Four interrelated parts make up this volume. Concepts concerning per-

sonal experience, emotions, health, marginalization, and resistance find voice
within each part while focusing attention on specific arenas or issues wherein
personal and emotional experience become relevant to academic and applied
efforts. Each of the fourteen essays is also written with both students, fellow
academics, and applied scholars in mind. They have been crafted as empiri-
cally nuanced, autoethnographic (Adams 2011) narratives utilizing accessible
language, concrete examples, and existing theory and literature from health
and social science fields. The goal is for these essays to be useful both in class-
rooms and for scholars seeking to grapple with the list of questions above in
academic and applied settings.
Part I, “Rewriting the Life Course,” opens this book with three essays
exploring the ways personal experiences—such as chronic diseases, patient
expectations, long-term caregiving, and the mental effects of racism—com-
plicate existing scientific and public assumptions about the “typical” life
course and the ways people manage ongoing marginalization and health-
related transformations. The three pieces in this part reveal the multiple pos-
sible directions a given life course may take based on personal, relational, and
social locations, transformations, and expectations. In so doing, they reveal
some ways personal narratives may sensitize students and researchers to vari-
ations in the events and stages that may make up a life.
Part II, “Revising Institutional Logics,” concerns the ways that institu-
tional expectations and norms impact people from diverse backgrounds. The
four pieces in this part reveal some ways life experiences in, for example, law
enforcement, health care facilities, families and relationships, and academic
disciplines, may reveal disparities between what we expect academically and
culturally and what actually occurs in such settings. In so doing, each of the
four essays in this section reveals some ways personal experiences in insti-
tutions may enhance the study and development of intervention strategies,
organizational protocols, and operating procedures within concrete settings
and academic fields seeking to improve outcomes.
Part III, “Rejecting Stigmatization,” introduces some ways scholars from
marginalized backgrounds encounter and resist stigma in their disciplines
related to certain research topics, social norms, and behavioral expectations.
xiv Preface
The four pieces in this part reveal insights about academia itself as well as
areas of study that remain invisible or stigmatized due to the absence of peo-
ple from such communities in traditional academic and applied fields. In so
doing, they reveal both the ways that stigma itself permeates academic struc-
tures and the ways people from marginalized backgrounds manage the mental
and physical effects of such stigma while attempting to do their teaching,
research, service, and/or advocacy within such structures.
In Part IV, “Redirecting Trauma,” we offer three final essays that focus on
the ways prior or current traumatic events may shape the teaching, research,
service, and activist efforts and experiences of academics, and the effects these
dynamics have on mental and physical health. The three pieces in this part
demonstrate some ways academics transform traumatic experiences in their
own lives into theoretical and applied insights about such phenomena miss-
ing from existing literature and interventions. In so doing, they reveal some
ways personal trauma may be redirected into a resource for improving aca-
demic and applied efforts as well as the scars and aches such experiences leave
behind in the mental and physical lives of such scholars.
Following the final three essays, we close this book with a reflection on
the importance of trauma-informed health research drawn from experiences
the editors shared while putting together this volume. Speaking directly back
to the first essay in this volume, we discuss the ways newly uncovered infor-
mation and knowledge may shift prior perceptions and understandings as
well as the ways the possibility of change always makes navigating emotional
and personal aspects of research, teaching, advocacy, and in fact, living a
constant process. In this final reflection, the editors encourage readers from
varied backgrounds to think deeply about the power of narrative and person-
alized understandings of the ways people experience life, emotions, mental
and physical health, and diverse social locations throughout the life course.
To this end, we invite every reader to carefully consider the nuances, vari-
ations, and complexities of personal experience shared, and the ways such
insights contribute to and complicate existing academic assumptions and
norms. The stories told here allow us to enter the lives of scholars from var-
ied backgrounds and diverse experiences, and engage with many questions
about the role of personal experiences, emotions, mental and physical health,
diversity, and marginalization populating academic conferences, blogs, and
training programs at present. We hope that this opportunity will lead readers
to think more deeply about the benefits and costs of personal, emotional, and
intellectual intersections in the lives of teachers, researchers, and advocates,
and have a greater appreciation for the difficulty and value found in the occa-
sions where people resist existing assumptions and norms in favor of actively
confronting the emotional and personal experiences that shape our profes-
sional, public, and private lives.

—Alexandra “Xan” C.H. Nowakowski and J.E. Sumerau

 Preface xv
References
Adams, Tony E. 2011. Narrating the Closet: An Autoethnography of Same-Sex
Attraction. Walnut Creek, CA: Left Coast Press.
Collins, Patricia H. 2005. Black Sexual Politics: African-Americans, Gender, and the
New Racism. New York, NY: Routledge.
De Welde, Kristine, Andi Stepnick, and Penny A. Pasque. 2014. Disrupting the Culture
of Silence: Gender Inequality and Making Change in Higher Education. New York,
NY: Stylus Publishing.
hooks, bell. 1994. Teaching to Transgress: Education as the Practice of Freedom. New
York, NY: Routledge.
Kleinman, Sherryl. 2007. Feminist Fieldwork Analysis. Thousand Oaks, CA: Sage.
Leavy, Patricia. 2015. Method Meets Art: Arts-Based Research Practice. New Haven,
CT: Guilford Press.
Martin, Patricia Y. 2005. Rape Work: Victims, Gender, and Emotions in Organization
Community Context. New York, NY: Routledge.
Nowakowski, Alexandra C.H., and J.E. Sumerau. 2015. Should we talk about the pain:
Personalizing sociology in the medical sociology classroom. Teaching Sociology
43(4): 290–300.
Sumerau, J. E. 2017. Cigarettes & Wine. Boston, MA: Sense Publishers.
Warner, Michael. 1999. The Trouble with Normal: Sex, Politics, and the Ethics of Queer
Life. New York, NY: Free Press.
Acknowledgments

As authors and editors in multiple formats to date, we know well that no book
is composed in isolation. There are always invaluable people who aid the pro-
cess whether or not their names show up on the cover of a given volume. As
such, we would like to thank everyone who, in one way or another, helped this
volume come to fruition, and especially note some of the people who played
primary roles in this process.
To this end, we cannot express enough gratitude to Lain A.B. Mathers
who, alongside offering a wonderful chapter in this book, has served admira-
bly as our editorial assistant and social media specialist at the “Write Where It
Hurts” blog (www.writewhereithurts.net) that gave birth to this volume since
its inception.
In a similar fashion, we are indebted to the talented authors who each con-
tributed chapters to this volume, and all the authors—whether found in this
volume or otherwise—who have contributed to the “Write Where It Hurts”
blog in the past two-plus years. When we began the blog, we never expected
the kind of support and participation we have received to date, and with the
help of many authors we continue to grow the space and encourage reflection
on the varieties of experience that inform research, teaching, art, and activism
within and beyond the academy.
At the same time, we are indebted to the people who have participated in
our “Write Where It Hurts” panels at academic conferences over the past
three-plus years, and especially to that first group who showed up brim-
ming with insights and ideas. The blog and this volume grew out of the seeds
planted in those conference panels, and we greatly appreciate the participants
and audiences who made (and continue to make) such panels possible each
year.
We would also like to note the powerful role played by supportive men-
tors in the overall trajectory that led to this volume. As implied in many of
the following chapters, supportive role models and mentors can have a pro-
found effect on academic careers and experiences. We have benefited from
such efforts from many people at Florida State University including, but
not limited to, Drs. Richard Nowakowski, Nancy Hayes, Gail Bellamy, Jill
Quadagno, Miles Taylor, Irene Padavic, Koji Ueno, John Reynolds, Terrence
xviii Acknowledgments
Hill, Petra Doan, Patricia Yancey Martin, John Taylor, Henry Carretta, Scott
Helzer, Janice McCabe, and Doug Schrock.
Finally, we want to thank the publishers of this volume for their helpful
and constructive comments, adjustments, and other efforts throughout the
process. As the authors of over eighty academic and literary works in our
careers to date, we know quite well how invaluable it is to work with a produc-
tion team that is helpful, professional, understanding, flexible, and committed
to quality. We have had the privilege of each of these elements in this process,
and we believe the volume has benefited greatly as a result.
Editors

Alexandra “Xan” C.H. Nowakowski, PhD, is an Assistant Professor at the

Florida State University College of Medicine, and affiliate faculty in the
Department of Sociology at Florida State University, Tallahassee. Dr.
Nowakowski’s teaching and research focuses on the experience and man-
agement of chronic conditions, social causes of and responses to health
inequalities, and evaluation of programs and services that promote health
inequality. Lifelong chronic illness and a passion for social justice motivate
Dr. Nowakowski in advocating for others with health challenges through a
variety of professional service activities.

J.E. Sumerau, PhD, is an Assistant Professor of Sociology and the Director of

Applied Sociology at the University of Tampa, Florida. Dr. Sumerau’s teach-
ing and research focuses on the interrelation of gender, sexualities, religion,
and health in the lives of sexual, gender, and religious minorities. For more
information, please visit: www.jsumerau.com.
Contributors
Tanetta Andersson, PhD
Department of Sociology
Trinity College
Hartford, Connecticut
Tracy B. Citeroni, PhD
Department of Sociology
University of Mary Washington
Fredericksburg, Virginia
Karen Glumm, PhD
Department of Social Sciences
North Carolina School of Science
and Mathematics
Durham, North Carolina
Eric Anthony Grollman, PhD
Department of Sociology and
Anthropology
University of Richmond
Richmond, Virginia
Andrea N. Hunt, PhD
Department of Sociology and
Family Studies
University of North Alabama
Florence, Alabama
Simone Kolysh, MPH, MPhil
Department of Sociology
The Graduate Center
City University of New York
New York City, New York
Lain A.B. Mathers, MA
Department of Sociology
University of Illinois at Chicago
Chicago, Illinois
Jessica Pfaffendorf, MA
School of Sociology
University of Arizona
Tucson, Arizona
Ariane Prohaska, PhD
Department of Criminal Justice
University of Alabama
Tuscaloosa, Alabama
David Springer, MA
Department of Sociology
University of Illinois at Chicago
Chicago, Illinois
Jose Torres, PhD
Department of Sociology
Louisiana State University
Baton Rouge, Louisiana
Angela Wadsworth, PhD
Department of Sociology and
Criminology
University of North Carolina at
Wilmington
Wilmington, North Carolina
Part I

Rewriting the life course

1 Death check
Doing life and research with chronic
autoimmune disease
Alexandra “Xan” C.H. Nowakowski

The first time I tell my story in front of a class, I am literally shaking. Despite
the warm summer air that surrounded me while I walked in, portions of my
hands have turned white as printer paper. I press them against the podium,
gritting my teeth against the feeling as the circulation returns. My right
hand—the one I need more—spasms and curls into a rictus. I decide not to
write my name on the whiteboard. I may feel more uncertain at this moment
than I have at any other point in my career, but I feel equally confident that
these students will remember me.
I am here tonight as an example of the two things that have most defined
my life: living with chronic illness and studying chronic illness. I give a talk on
patient–provider communication (Hall, Roter, and Rand 1981) and patient-
centered medicine (Laine and Davidoff 1996). I discuss how social work-
ers can help to bridge the gaps in health care through which people often
fall (Bensing 2000). I join other scholars (Oates, Westin, and Jordan 2000)
in challenging the notion that evidence-based medicine and patient-centered
medicine are mutually exclusive frameworks. To introduce the academic and
professional content that I cover, I provide some context for the importance
of these lessons. That context just happens to be me, and the twenty-seven
years of life that I have lived in this body—years that often feel like time that
I have done. Yet, when someone asks my age, I tell this room full of suddenly
wide-eyed students, I think first that I am twenty-three plus four: the twenty-
three years before the night that was supposed to be my last and the four that
have followed after.
I am a teachable moment for this group, a living person in whom the
specter of death still hovers. I have cried on the shoulder of a social worker
in an empty hospital room, surrounded by people who will leave the ward in
body bags. I have sought counseling because thoughts of suicide became a bit
too concrete at times. I have a bottle of liquid potassium chloride stowed in
a shadowy corner beneath my bathroom sink. I could use it for maintenance
therapy, like I do with my time-release potassium tablets. I could also use it
for an entirely different purpose. The times where I have thought about buy-
ing syringes have been some of the most sociologically instructive of my life.
4 Rewriting the life course
Hovering on the brink of disclosure, I think about the possibility that my
silences have said as much as my stories may now (Charmaz 2002). Without
telling my own story, however, I cannot hope to break the systemic silence
that divides the personal from the so-called professional (Vickers 2002). This
divide is often especially sharp in academia, where notions of objectivity and
competence dominate (Myers 2007). I think that if I cannot do that, I might
as well be twenty-three again, and slip away into the darkness that has claimed
so many others with stories like mine. So I take the deepest breath my dam-
aged lungs can manage, and go back to the beginning, and allow myself to
remember.
I am four years old, the first time I stop breathing. My neurobiologist par-
ents rush me to the nearest hospital in their Volkswagen Jetta; I faintly recall
brushes of blue vinyl from the back seat against my cheek as my mother holds
me. This will be my first exposure to caregiver stress (Pearlin, Aneshensel, and
LeBlanc 1997) and gender differences therein (Yee and Schulz 2000). It will
not be my last. Years later, I will listen to my mother fall apart over the tele-
phone, promising to give me one of her kidneys, begging me to hang on until
she can be by my side. My father will sound thoughtful as he bites back tears,
explain that it may take a while for them to get standby flights, but that they
are on their way. I ask him to convince my mother to keep both kidneys; we
laugh together. Then I hang up and contemplate a life on dialysis as machines
hum around me, keeping me alive.
I am seven years old. I feel nervous about going skiing with my classmates.
My mother encourages me to eat breakfast, which I do, and then promptly
vomit up. Mom just strokes my hair and applauds me for trying to eat. I rush
her out of the bathroom so that I can use the toilet, my body now intent
on voiding all possible contents. It has been like this for as long as I can
remember. I get nervous or overly excited and my digestive system loses all
semblance of normative function. The list of foods that will make me vomit
is constantly evolving. My parents valiantly clean up vomit in a variety of
bizarre scenarios that will later seem comical. At that time, I am mortified.
I begin to view myself as a difficult child: the asthma diagnosis, the nebulizer,
the inhalers, the restrictions on what I can do, the vomiting, the diarrhea,
and the inexplicable intolerance for certain foods. I worry that I will exhaust
my caregivers, as often occurs in cases of persistent chronic illness (Bury
1991). They assure me that having me was the best decision they ever made,
but increasingly I reproduce the view of illness as deviance (Twaddle 1973)
within myself.
I am eleven years old and the pain in my pelvis seems to come from nowhere.
One moment I feel fine and the next I am bent over double in the bathroom,
confused and frightened in the limited portion of my consciousness that has not
been shattered by pain. Over time, this pain entrenches and becomes constant,
a burning ache punctuated by stabbing sensations that radiates throughout
my body. I tell no one. I sit in classes and cross my legs as hard as possi-
ble, hoping for relief that never comes. I consider asking my parents to take
 Death check 5
me to the doctor, but remember the horror on their faces when I would stop
breathing, or vomit constantly, or experience such terrible diarrhea that my
skin would pucker at the wrist. I learn to numb out, not knowing at the time
that chronic pain can change the very structure of the brain (May 2008) and
disrupt important cognitive functions (Baliki et al. 2008). I focus on being
strong, on not burdening others, doing gender (West and Zimmerman 1987)
at both ends of the spectrum. I will later reflect on this as an early cornerstone
of my self-awareness as a genderqueer scholar of health.
I am thirteen years old, my stomach tied in knots from eating a small
amount of food. I feel nauseated all the time. Like many people with painful
chronic conditions, I have also begun to feel relief from controlling what I eat
for a combination of cognitive and physical reasons (Plata-Salamán 1996).
I begin to have trouble keeping food down even when I do not feel especially
anxious. Perhaps in part because I am female, the consequences of my tacit
acceptance of my gastrointestinal symptoms often meet with neutral or posi-
tive social feedback. Some of my teachers express concern; I change the sub-
ject, ask to borrow a book or get critique on a paper. My parents worry. This
will become a constant over the next few years—hugs in which my bones are
counted, sad looks as I donate clothes that once fit.
I am nineteen years old. My research career almost grinds to a halt as it is
just beginning. After fainting in the shower several times, I decide to visit the
student health service. I am vomiting so much that I struggle to keep water
down. The doctor looks at my blood work and frowns, fingers the downy hair
that my body has begun growing to keep itself warm. She tells me I need to
be in the hospital. I protest, knowing even then that hospitalization often
marks the beginning of a long process of biographical disruption (Bury 1982)
in people with chronic diseases. I am admitted to a hospital in New Jersey,
close to home. I am placed on a special ward for people with eating disorders,
despite my protests that my problems go a lot deeper than disordered eating.
My inchoate feelings (Karp 1997) spill out like tears. Something is very wrong.
Please listen to me.
My concerns are mostly dismissed, but the hospital grants me the mercy
of an endoscopy, which reveals that I have gastritis and an infection in the
wall of my stomach. I am given antibiotics, antinausea medication, and an
acid reducer. I beg to be discharged so that I can go back to school, which
I do. Things get steadily worse—the pain, the vomiting, and the diarrhea.
Sometimes I pass nothing but an odd greenish liquid for weeks at a time. One
night I vomit a quart of black slime into the bathroom sink, only to be carried
back to bed by my 110-pound mother. This disturbs me on some level, but I
ignore it in favor of focusing on my schoolwork. I do not have the sense—
or more likely, the self-respect—to feel truly horrified until it is much too
late. My memories of this time blur together to an unusual degree, a haze of
pain that I refuse to do anything about and papers I push through it to write.
I graduate magna cum laude and put my political science degree to use in a
government job that I am told on my third day I will leave for graduate school
6 Rewriting the life course
and a career in academia. I wonder at the possibility of focusing on my future
when I question my desire to live from one minute to the next.
I am twenty-two years old. All of my clothes are falling off and my hair has
begun to fall out. The constant pain in my pelvis has become so agonizing that
I begin to consider suicide. This disturbs me enough that I use my new health
insurance card to visit a primary care doctor and explain the pain as best I
can, how it feels and where I think it comes from, and my history of having
my entire reproductive system checked for everything from endometriosis to
cancer. He refers me to a gynecologist who asks if I have ever had my blad-
der examined. I sit bolt upright and ask if he thinks I have interstitial cystitis,
which other doctors had told me I could not have because I did not have issues
with continence. Within three weeks, I am diagnosed by a local urologist and
having surgery to destroy the scar tissue that has built up on the nerves in my
bladder, creating a constant flow of pain signals. Three days after surgery, I
realize that I do not feel pain in my pelvis. Then a strange sense of emptiness
swallows me whole and I begin to exhibit symptoms of posttraumatic stress
disorder—apparently not uncommon in survivors of chronic pain (Turk and
Monarch 1996).
I am twenty-three years old and immersing myself in work to avoid dealing
with the wreckage of my psyche after years of chronic pain and its social and
emotional consequences. My weight continues to drop and my gums recede
to the point that I can see bone beneath some teeth. I will later be told that if
I do not have extensive surgery on my mouth, I will probably lose all of my
teeth and portions of my lower jaw to infection. That winter, I contract a virus
that makes my digestive symptoms spiral out of control. I develop enteritis
and never recover, instead visiting the bathroom a dozen times a day to pass
liquid and eventually blood. I begin to experience tremors and shooting pains
in my limbs—tetany, I will later learn, caused by catastrophic potassium loss.
I continue to go to work and maintain my household, doing little else
except sleeping. My heart flutters in my chest. I faint in the shower again,
coming to in a cold sweat. By the time my vision begins to blur at the edges
and my lungs constrict painfully with every breath, I am hearing voices that
whisper and rasp incoherently. My sinuses constantly fill with the scent of raw
onions, a smell that I still associate with death. I become aware on some level
that I am probably dying, wonder if I even want to survive this, or if I should
simply let nature take its course. I leave work one day, feeling terribly ill, my
legs shaking so badly that I can barely drive myself home. I lie down on my
living room couch, struggling to breathe. My vision tunnels and fades. I won-
der how I will drive back to work in the morning, and it is this thought that
leads me to conclude that I might as well go to the emergency room.
The doctor in the emergency room affirms that yes, I am dying. I have
a serum potassium of 2.1 mEq/L, the lowest he has ever seen in a living
human being. He explains that even though my heart is still functioning—
remarkably with no arrhythmia—I am at risk for slipping into a coma from
which I will never return. I think about Terri Schiavo, who also died from
Another random document with
no related content on Scribd:
XXI.

Nuotioniemessä on riihitetty viimeiset peltoviljat. Laarit ovat

täyttyneet kukkuroilleen. Metsävainioilla ovat säiliöt täynnä rehua ja
puimatonta viljaa ja syyslaiho näyttää lupaavalta.

Tuomas häärii työssä aamusta iltaan niin kuin ennenkin, mutta

mitään työniloa hän ei voi enää tuntea. Tekeepähän vain jotain
tehdäkseen. Ja kun ei voi tekemättäkään olla.

Päivät ovat käyneet jo lyhyiksi ja taivas on yhtämittaa pilvessä.

Öisin sataa. Tuomas kuuntelee sateen rapinaa ikkunaruutuihin ja
miettii synkkiä mietteitään. Kun ei voi miettimättäkään olla. Ei vaikka
kuinka tahtoisi.

Ja aina raastaa tukahduttava suru siitä, että poika, pikku Matti, ei

ollutkaan hänen oma poikansa. Ei ollut, vaikka oli kuitenkin vieläkin
niin kuin oma lapsi. Kiintymys ja isänrakkaus ei särkynyt niin vähällä.

Tuomas päätti olla näkemättä poikaa, syliinsä ottamatta, mutta kun

poika juoksi jo ovessa vastaan ja kapusi syliin lausuen luottavasti:
"isä ottaa syliin", "isä soutaa", ei hän hennonnut, vaan soudatteli
poikaa polvellaan ja koetti olla mitään ajattelematta.
 Kun ei olisi saanut koskaan tietää, että poika ei ollut hänen
omansa, ja kun vieläkin saisi niin uskoa, että poika oli hänen, muttei
voinut.

Ja kun voisi uskoa, että lapsi, jota Anna kantoi, on oma lapsi, olisi
helpompaa ja elämä vieläkin voisi muuttua, sammua kirvelevä suru
edes hetkiseksi, mutta sitäkään ei voinut.

Anna kantoi Isotalon sikiötä. Sanoi kantavansa katuen, vaan mikä

hänen tiesi, katuiko. Tuomas ei uskonut enää vaimonsa vakuutuksia
eikä lupauksia, vaikka tämä itkien katui ja tunnusteli luvaten
uskollisuutta. Irstaan naisen lupaus, mitä se merkitsi.

Niinkuin lehti tuulessa oli nainen rakkautensa ja intohimonsa

ajamana.

Tuomas ei voinut enää vihata eikä raivota. Kaikki muut tunteet,

paitsi suru, olivat hänestä sammuneet.

Silloin oli raivonnut viimeksi, kun tuli tietämään Annan raskauden.

Nyt oli jo kaikki samantekevää.

Tähän saakka oli häntä pitänyt yllä heikko toivo siitä, että
jotenkuten saattaisi kaikki vielä selvetä ja muuttua. Oli syntynyt
sairaalloinen mielikuva, joka saattoi joskus ajattelemaan, että kaikki
olikin ehkä vain leikkiä, keksitty kiusaksi hänelle. Pikku Matti voi olla
hänen samoin kuin toinenkin. Anna vain kiusaa häntä sanoakseen
joskus, että se onkin ollut vain leikkiä, pilaa kaikki tyyni.

Se oli sairaiden aivojen harhakuva, mielijohde, joka sai hänen

päätöstään luopua elämästä siirtymään päivä päivältä
tuonnemmaksi.
 *****

Tuomas oli Jannen kanssa ollut koko päivän kynnöksellä.

Syksyinen ilta hämärtyi. Hevoset riisuttiin ja vietiin syöttöhakaan.
Veräjällä palatessa virkkoi Janne.

— Saisit sinä Tuomas sentään olla isäntä talossa ja antaa sille

roistolle kerrankin niin, että lakkaisi taloa kiertelemästä.

— Kenelle?

— Isotalollepa tietysti. Et näy huomaavan, vai etkö näe, mutta

joskus käy vielä Annaa kärkkymässä.

— Ja uskaltaako vielä Anna ja ilkeääkö…?

— En tiedä tarkemmin, mutta niin on minullekin vastenmielinen se

ihminen, että olisin jo siihen paikkaan lopettanut, jos olisi ollut minun
kohdallani.

Tuomaan aikoja sitten sammunut viha kuohahti jälleen. Se antoi

varmuutta hänen päätökselleen. Häpeä oli nyt jo hänelle liian suuri
kannettavaksi. Hänen täytyi päästä pois näkemästä ja kuulemasta.
Elämä oli liian raskas enää päivääkään eteenpäin elettäväksi.

Tuomas istui pellon veräjäpuulla.

— Sinä olet ollut aina hyvä toveri ja ystävä minulle, virkkoi hän
tukahtuneesti Jannelle. Etkö tekisi minulle vielä yhtä palvelusta?

— Johan toki teenkin.

— Kävisit vielä tänä iltana sanomassa Kustaavalle, sisarelleni, että

tulisi aamulla Nuotioniemeen. Tahtoisin ennen lähtöäni tavata…
 Ääni särkyi. Hetken perästä jatkoi Tuomas.

— Ja veisit sanan Mäkäräiselle, että tulisi hänkin tänne

kuulemaan» viimeisiä määräyksiäni.

Janne katsoi ihmetellen Tuomaaseen. Vihdoin hänelle selvisi

kaikki.
Hänen silmäripsensä kostuivat.

— Aiotko sinä siis…?

— Minä en jaksa enää kantaa häpeääni, sanoi Tuomas

tukahtuneesti. Mitäpä hyödyttää viivyttäminen. Elämällä ei ole enää
mitään minulle annettavana. Parasta, kun poistun.
XXII.

Tuvassa oli hiljaista. Könniläinen mittasi aikaa verkalleen.

Mäkäräinen istui pöydän päässä ja kirjoitti. Tuomas istui pöydän

takana pää käteen nojaten. Mäkäräinen luki paperista.

— … Että kuolemani jälkeen jää talon hoitajaksi Janne, joka

saakoon siitä palkkioksi Nuotioniemeen kuuluvan takamaakappaleen
torppineen ja naimisiin mentyään neljä lehmää talosta…

— Ja sitten…

— Vaimoni saakoon elatuksen talosta, niin kauan kuin elää. Jos

talo jostakin syystä tulisi myytäväksi, saakoon kerta kaikkiaan
kaksituhatta markkaa. Ja sitten…

Tuomaan kasvot värähtivät ja silmäkulmaa täytyi pyyhkäistä

kädenselällä.

— Saakoon pikku Matti täytettyään kaksikymmentä vuotta

Nuotioniemeen kuuluvalla toisella ulkopalstalla olevan torpan maat ja
jo aikaisemmin samalle torpalle eroitetun metsäpalstan ikuiseksi
omaisuudeksi.
 "Tämän saakoon", Tuomas olisi tahtonut sen panna testamenttiin,
"pikku Matti lahjaksi isältä, jolla ei ollut isän oikeutta lapseensa",
mutta se jäi kirjoittamatta.

Kustaava, Tuomaan sisar, istui karsinapenkillä ja nyyhki hiljaa.

Odotahan, ajatteli Tuomas silmätessään sisareensa, kyllä minä

muistan sinuakin.

— Ja sitten?

— Saakoon sisareni Kustaava, sitten kun talo on lopullisesti

maksettu, viisisataa vuosittain kuolemaansa saakka. Saakoon
neljätuhatta markkaa kertakaikkiaan, jos talo jostain syystä tulee
myytäväksi.

Tuomaan kasvoille nousi kylmä hiki. Vaikein pykälä oli edessä.

Kustaava tuli hänen viereensä.

— Etkö sinä muistakaan lupaustasi? Sanoithan antavasi sillekin,

joka syntyy, sanoi hän katseellaan Tuomaalle.

Tuomas pyyhkäsi kylmän hien otsaltaan ja sanoi samalla tavalla

katseellaan.

— Niin teenkin.

— Sitten?

Mäkäräinen piirteli vakavana vapisevalla kädellään.

— Merkillinen mies tuo Tuomas, hymähti hän itsekseen..

 — Saakoon vielä syntymätön lapsi, jos elää, kertakaikkiaan tuhat
markkaa.

Nyt se oli tehty. Tuomas huokasi keventyneesti. Että se sittenkin

saattoi käydä niin helposti niiden monien taistelujen perästä.

Mäkäräinen katsoi kysyvästi. Tulisiko mitä vielä…?

— Ja sitten jos mitä jää, jaettakoon tasan Jannen, Kustaavan ja

pikku
Matin…

Tuomas pysähtyi.

— Yksi olisi vielä.

Kustaava nykäisi häntä hihasta ja katsoi rohkaisevasti silmiin.

— Ja vaimoni kesken, lisäsi Tuomas reippaasti. Ja siinä se nyt

onkin, kun kirjoitan vain nimeni. Sinä, naapuri, saat sitten pitää
muusta huolen.

Mäkäräinen nousi lähteäkseen ja puristi Tuomaan kättä hyvästiksi.

— Onkohan tämä nyt vaan kaikki oikein, että sinä näin…? arveli
Kustaava veljelleen.

— Etkö ole osaasi tyytyväinen? kysyi Tuomas.

— En minä sitä tarkoittanut. Sitä minä vain, että kun sinä näin
vapaaehtoisesti…

— Kyllä se on oikein, kun se on niin päätetty. Mikään ei saa minua

peruuttamaan päätöstäni.
 — Onhan se niinkin, tuntui sisar sanovan katseellaan. Kaikkea
muuta mies kestää, mutta tällaista surua ja häpeää…

Ilta alkoi hämärtää.

Tuomas istui pöydän päässä pidellen pikku Mattia polvellaan.

Kustaava istui pöydän takana. Veljellä ja sisarella tuntui olevan hyvin
paljon toisilleen sanottavaa, mutta he vaikenivat.
XXIII.

Syksyinen ilta hämärtyy. Tuuli repii irti puista kellastuneita lehtiä ja

lennättää pitkin alastomia vainioita ja rapakoisia kyläteitä. Harmaista
pilvistä putoilee sadepisaroita.

Tuomas on heittänyt hiljaiset hyvästit talolle. Surullinen silmäys on

vielä kerran hyväillyt peltosarkoja, aittoja, karjahuoneita ja lämpiävää
riihtä peltojen keskellä.

Siihen se nyt jää kaikki, toiselle. Parhaiksi kun ehti kiintyä, täytyy
siitä luopua.

Tuomas palaa suoperkkiolta, jossa on käynyt sanomassa hyvästit

työväelleen.

— Mihin se isäntä nyt? on kysynyt joku työmiehistä. Sama

kysymys on näkynyt kaikkien kasvoilla.

— Hyvin pitkälle matkalle, on Tuomas virkkanut tukahtuneesti ja

on pyytänyt Jannen seuraamaan itseään taloon.

— Pidähän huoli sitten kaikesta. Verotkin on käytävä maksamassa

ensiviikolla. Suon ympärille saat panettaa uutta aitaa, niin paljon kuin
tänä syksynä kerkeää. Saisit tarkkailla kauralatojen kattojakin,
vuotavatko. Heinäsuosta tulee hyvä niitty, kun ojitat ja muokkaat
kunnollisesti. Pikku Matin torpan palstaan, jos hän sitä kerran
tarvitsee, elä kajoa. Kun aika tulee, niin rakennat kartanon siihen.
Peltomaat saat pitää puuttomina, niin helpompi on pojan sitten
raataa, jos hänestä raatajaa tullee…

Jannesta tuntui helpommalta, kun isäntä näin lähtiessään haasteli

ja töitä toimitteli.

Tuomas meni tupaan ja otti pojan syliinsä.

— Pikku Matti raukka… et tiedä vielä mitään… kasva nyt suureksi

ja oikein hyväksi pojaksi…

— Mihin isä menee?

— Hyvin, hyvin kauas… Ole hyvä äidille ja… kiitos kaikesta.

Kuumat virrat alkoivat vierähdellä pojan suortuville.

Tuomas meni ulos. Janne seisoi pihamaalla kasvot värähdellen.

— No hyvästi nyt sitten ja kiitos kaikesta.

Miehet puristivat kättä voimakkaasti.

— Onnea vain matkallesi.

— Kiitos. Ja huolehdi pikku Matista.

Tuomas painui rantaan. Anna oli siellä vaatteita huuhtomassa.

Tuomas tarjosi hänelle kätensä.
 — Nyt minä voin antaa sinulle kaikki anteeksi. Kuolemassa ei saa
mitään muistella. Olen varannut sinulle ja lapsillesi riittävän
toimeentulon. Hoida hyvin pikku Mattia. Jää hyvästi!

Anna oli ottanut Tuomaan käden omaansa ensin huomaamatta,

mitä hän sanoi. Nyt hän jo huomasi. Tuomaan kasvoilta oli veri
paennut. Ne olivat kuin palttina.

— Herra jumala! Mitä sinä teet?

Mutta Tuomaan venhe irtaantui jo rannasta.

Jannekin oli kävellyt rantaan ja pyyhkäsi kädenselällä kasvojaan.

— Tuomas… mitä sinä aiot…? Hyvä jumala… Mihin sinä

menet…?

— Viimeiselle matkalle taisi lähteä, sanoo Janne. Nuotiokoskesta

sanoi laskevansa.

Tuomaan venhe keinuu jo laineilla ja etenee nopeasti

Nuotiokoskelle päin.

Anna purskahtaa itkuun, juoksee pitkin rantaa, huitoo käsillään,

raastaa hiuksiaan ja vaikeroi.

— Anna minulle anteeksi, Tuomas… anna anteeksi… käänny vielä

takaisin… edes hetkiseksi… Ei se käänny…! voi herra jumala!

Anna vaipuu taintuneena rantaäyräälle. Venhe kääntyy jo niemen

taakse, josta koski alkaa vetää pauhaavaan nieluunsa.

Kerran vielä nousee Tuomas seisomaan venheessä ja huiskuttaa

hyvästiksi kädellään. Sitten katoaa venhe hämärään.
XXIV.

Tuomas souti koskea kohti, jonka kumea kohina jo kuului hänen

takanaan hämärtyvässä illassa. Hän tunsi olevansa siinä
soutaessaan kuin teräksinen jännitetty jousi, niin kuin tahdoton
kappale, jota jokin outo voima veti puoleensa vastustamattomasti.

Anna liikkui siellä rannalla ja väänteli käsiään. Mikä oli Anna? Ja

mikä oli tuo talo, jonka rannasta hän äsken lähti soutamaan? Oliko
se hänen kotinsa, joka jäi nyt sinne hämärän, pimenevän verhon
taakse? Mikä oli koti ja nainen siellä…? Mikä oli se outo voima, joka
puristi rautaisilla sormillaan ja veti häntä puoleensa?

Kuolema! Haa, mikä oli kuolema? Pelkäsikö hän sitä?

Tuomas näki itsensä arkussa ja sitten haudassa. Multa kolahti

arkkuun ja jostain kuului: Maasta olet sinä tullut. Ja sitten poistui
saattajien pieni joukko ja Isotalo nauraa hohotti.

Isotalo! Hän jäisi voittajaksi. Se konna saisi nauraa hänen

haudallaan!

Huu, miten koski nyt ilkeästi kumisikin. Pyörre alkoi jo vetää

venhettä.
 Isotalo voittajaksi! Mitä hän nyt aikoikaan tehdä? Testamentti,
hyvästit talolle ja perheelle… pikku Matti…

Koski jo tempoi venhettä, joka oli kääntynyt poikkiteloin perä

edelle.

Ei, mutta mitä nyt olikaan tapahtumassa? Mitä?

Tuomas koetti ponnistaa kaikki voimansa päästäkseen johonkin

varmaan selvyyteen. Päässä humisi ja ruumis oli kuin raskas kivi.
Hän koetti nauraa. Mies tekee päätöksen ja harkitsee nyt sitä,
häväisty mies, jolla ei ole kotia eikä perhettä. Nauru tarttui kurkkuun
ja käsivarret kävivät voimattomiksi. Venhe ajautui rannalle ja tarttui
pyörteen niskassa kivien väliin.

Mitä, mitä tässä nyt tapahtuikaan? Hänenhän piti alas koskesta,

miksei venhe jo irtaudu kivestä. Kuka nauroi? Isotaloko? Mitä, eikö
pikku Matti kysynyt: Isä, mihin sinä menet?

Tuomaan otsalta tippuivat kylmät hikipisarat. Hän koetti rukoilla,

mutta jumala tuntui olevan jossain hyvin kaukana. Hän koetti huutaa,
mutta kieli tarttui suulakeen. Päässä jyskytti vain yksi ainoa kysymys:
Mitä, mitä tässä tapahtuikaan?

Pakeniko hän elämää, joka oli hänet kummallisiin verkkoihinsa

saanut sotketuksi? Tahtoiko hän väkipakolla jättää kärsimysten
painon hartioiltaan ja siirtyä suureen tuntemattomaan, olevaisuuden
rajan yli? Mitä nyt tapahtuikaan?

Itsemurha!

Salamana välähti se hänen tajunnassaan. Oliko hän jo niin

pitkällä?
 Kylmä hiki virtasi pitkin hänen ruumistaan. Laine riuhtoi venhettä
irti kivien välistä, koski pauhasi kumeasti. Pimeys ympäröi hänet ja
niinkuin niljaiset kädet olisivat vetäneet häntä alas kurimukseen.
Pimeys ympäröi vielä hänen sairaat ajatuksensakin, mutta tuntui niin
kuin jostain olisi alkanut pilkoittaa valoa. Herra jumala, mitä hän
olikaan aikonut tehdä? Näinkö hän kantoi kuormaansa? Eikö hänen
häpeänsä tulisi näin vieläkin suuremmaksi? Oliko hän mies vai
voimaton raukka?

Laine repäisi irti venheen ja pyörre alkoi sitä vetää alas, mutta nyt
tunsi Tuomas jo voiman käsivarsissaan jännittyvän. Venhe kääntyi
ylös ja ponnistaen äärimmilleen sai hän sen nousemaan.

Tumman metsän takaa pilkahti tähti. Se oli kuin jumalan silmä.

Äsken oli hän huutanut jumalaa, muttei saanut vastausta. Tähden
tuike oli kuin vastaus. Jumala tuntui lähenevän.

Koski veti venhettä nieluunsa, mutta käsivarsien voima vahveni.

Vielä hetkinen ja hän oli pelastettu jostakin hirveästä, joka nyt
värisytti sitä ajatellessa.

Venhe keinui jo laineilla. Kosken humina kuului jo kauempaa.

Tuomas ei tullut ajatelleeksi, mihin hän souti, kunhan souti vain.
Päässä ja jäsenissä tuntui kummallinen raukeus. Airot putosivat
hänen kädestään ja venhe jäi keinumaan laineille. Tuomaan raskas
pää painui polvien varaan.

Kuinka kauan hän aalloilla ajelehti, ei hän tietänyt. Kun venhe

kolahti rantaan ja hän nosti päätään, valkeni jo aamu. Tuomas
huomasi, että laineet olivat tuoneet hänet kotirannalleen.
 Saatuaan venheen maalle ja noustuaan rantatielle, näki hän,
kuinka nouseva aurinko tervehti häntä. Silloin tunsi hän, niin kuin
outo painajainen olisi hänestä hävinnyt tiehensä.

Hän seisoi siinä omalla pellollaan. Hän olikin vielä elossa.

Hetkiseksi tuli painava ajatus, että hän oli aikonut häpeäänsä vain
lisätä, eikä miehen tavalla sitä kantaa, mutta se häipyi yhtä pian kuin
painajainen äsken. Hän tunsi yöllä taistelleensa suuren taistelun,
käyneensä kuoleman läpi. Ja niin kuin uudestaan aloittaisi hän nyt
elämänsä.

Olihan hänellä vielä jotain jälellä, jos olikin perheensä menettänyt.

Olihan maa, jolla hän tässä seisoi, hänen omaansa. Se ei pettäisi
häntä ja se kyllä kykenisi parantamaan hänen kärsimyksensä.

Vähitellen nousi Tuomas pihaan.

Vilun väreet karsivat hänen ruumistaan ja jalat tuskin kantoivat

häntä. Suonet takoivat rajusti ja päätä huimasi. Oliko se sairaus, joka
nyt tavoitti hänet?

Ei tuntunut yhtään pahalta sitä ajatellessa.

Janne seisoi tuvan portailla, kun Tuomas horjuvin askelin tuli

pihaan.
Hänen kasvonsa kirkastuivat ja vaieten hän riensi ojentamaan
kätensä
Tuomaalle.

Tuomas tarvitsikin tukea. Suonet hänen ruumiissaan löivät yhä

hurjemmin ja sairaus tuntui kiertävän kuin myrkky hänen veressään.
 Voimatonna painui Tuomas vuoteelle Jannen saattamana. Hän sai
tietää, että Annakin oli heikkona sairaana. Kiertäessään rantoja
viime yönä mielettömän tuskansa vallassa oli hän aamuyöllä
painunut vuoteelle ja jäänyt siihen.
XXV.

Maatessaan sairasvuoteella ja öisin kiemurrellessaan kuumeen

kourissa kiusasivat Tuomasta vielä ilkeät harhanäyt.

Hän taisteli kosken kuohuissa ja Isotalo seisoi rannalla rumasti

nauraen. Anna ilmestyi siihen hänen vierelleen ja yhdessä he
ilkkuivat hänen ponnistuksilleen.

Isotalo oli velastaan ottanut kaikki hänen karjansa ja hevosensa.

Ilkkuen ajoi niitä edellään ja veti Annaa kädestä mukanaan. Hän
kirosi, muttei voinut mitään.

Ja vielä ilkeämmätkin kuvat piinasivat häntä.

Aamu toi rauhan ja hyvän olon tunteen ruumiiseen.

Se vähensi taudin tuomia tuskia. Sitä mukaa kun hän tunsi

ruumiinsa heikkenevän, varmistui hänen suuri ja ihana rauhansa.
Hän saattoi jo kaikkea katsella kuin ulkopuolella olijana.

Tuli mieleen siinä vuoteella viruessa, että hän yksin ei ollut

kärsimässä elämän oudoista ongelmista. Kaikilla saattoi olla omat
salaiset kärsimyksensä, suuremmat tai pienemmät.
 Eivätkö he kaikki kantaneet kuormaansa vaieten ja valittamatta?

Ainakin ne, joilla kuorma oli raskain.

Pyrkikö kukaan heistä väkivaltaisesti kuormastaan vapautumaan?

Hän oli pyrkinyt. Pimeys oli ympäröinyt hänet joka puolelta. Miten
hän oli niin saattanutkaan…?

Mutta nyt hän oli jo päässyt kaiken yläpuolelle. Hän muuttaisi

suureen tuntemattomaan niin kuin mies, eikä niin kuin voimaton
raukka.

*****

Laskevan päivän kirkas kajastus tulvahti kamarin ikkunasta sisään

ja värähteli sairasvuoteella.

Janne istui vuoteen jalkapäässä. Miehet katselivat siinä vaieten

vastakkain. Suuri hiljaisuus ympäröi heitä.

Hetkisen perästä virkkoi Tuomas.

— Sinä tiedät sen testamentin… minä olen muuttanut sitä… Pikku

Matti aikuiseksi tultuaan perii talon niin kuin poika ainakin… Eihän
pojan tarvitse vanhempien häpeätä kantaa. Sinä saat torpan ja ne
muut, jotka olivat pojalle aiotut. Oletko tyytyväinen tähän?

Janne nyökkäsi.

— Kyllä minä taloa hyvin hoidan ja poikaa myöskin, virkkoi Janne.

— Ja sitä… joka tulee… on myöskin hoidettava…

 Janne käänsi päänsä hämärään ja pyyhkäsi kädenselällä
kasvojaan. Ja laskien kätensä sairaan kädelle virkkoi.

— Kyllä minä pidän huolta kaikesta.

Tuvassa kuului väki asettuvan illalliselle. Anna tuli huoneeseen.

Tuomas ojensi kätensä hänelle.

— Nyt minä vasta lähdenkin, virkkoi hän hiljaa. Tule sinä sitten,
kun joudut. Ehkäpä siellä toisessa maailmassa voimme aloittaa uutta
elämää.

Anna nyyhkytti.

— Voitko… voitko sinä antaa minulle anteeksi?

Mutta Tuomas ei kuullut enää.

— Anteeksi on antanut… ei sanonut enää mitään muistelevansa,

virkkoi
Janne hiljaa.

Huoneeseen oli tullut hiljainen hämärä.

 *** END OF THE PROJECT GUTENBERG EBOOK HÄPEÄ ***

Updated editions will replace the previous one—the old editions will
be renamed.

Creating the works from print editions not protected by U.S.

copyright law means that no one owns a United States copyright in
these works, so the Foundation (and you!) can copy and distribute it
in the United States without permission and without paying copyright
royalties. Special rules, set forth in the General Terms of Use part of
this license, apply to copying and distributing Project Gutenberg™
electronic works to protect the PROJECT GUTENBERG™ concept
and trademark. Project Gutenberg is a registered trademark, and
may not be used if you charge for an eBook, except by following the
terms of the trademark license, including paying royalties for use of
the Project Gutenberg trademark. If you do not charge anything for
copies of this eBook, complying with the trademark license is very
easy. You may use this eBook for nearly any purpose such as
creation of derivative works, reports, performances and research.
Project Gutenberg eBooks may be modified and printed and given
away—you may do practically ANYTHING in the United States with
eBooks not protected by U.S. copyright law. Redistribution is subject
to the trademark license, especially commercial redistribution.

START: FULL LICENSE