Thriving Through It—How They Do It: What It Takes to Transform Trauma into Triumph

Copyright © 2014 Joyce Ann Tepley.

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ISBN: 978-1-4917-1818-6 (sc)

ISBN: 978-1-4917-1817-9 (hc)

ISBN: 978-1-4917-1816-2 (e)

Library of Congress Control Number: 2013922726

iUniverse rev. date: 06/13/2014

Contents

Foreword

Preface

Acknowledgments

Introduction

Part One My Who’s Who Of Thrivers

Barry Corbet, Mountaineer/ Magazine Editor (63) Spinal Cord Injury

Phyllis Rubenfeld, University Professor/Disability Rights Activist (62) Post-Polio Syndrome

Gilbert Estrada, Volunteer/ Activist (47) Cerebral Palsy

Anor Byer, Project Manager (53) Post-Polio Syndrome

John Roberts, Resource Organizer (43) Muscular Dystrophy

Karyl Eckels, Caregiver Coordinator (59) Sickle Cell Anemia

Peg Nosek, Researcher/ Disability Activist (48) Spinal Muscular Atrophy

Charlotte Stewart, Agency Director (48) Rheumatoid Arthritis

Bob Roark, Reluctant Mentor (49) Spinal Cord Injury

Ronnie Philipp, Faith Driven (54) Post-Polio Syndrome

Willie Mae Clay, Advocate For Persons With Disabilities (53) Cerebral Palsy

Pat Pound, Disability Policy Analyst (50) Sight Impairment

Gail Bookman, Ever Hopeful (39) Sickle Cell Anemia

Joan Headley, Organization Director (53) Post-Polio Syndrome

Lonnie Kendrick, Prayer Warrior (50) Back Injury

Patricia Mckenna, Change Agent (60) Cerebral Palsy

Dennis Gerron, Entrepreneur Of Social Programs (40) Sight And Hearing Impairment

Judy Babbitt, City Planner (59) Post-Polio Syndrome

Jan Garrett, Agency Director (38) Born With No Arms And Legs

Myrna Gorchoff, Volunteer Advocate For People With Disabilities (43) Dandy-Walker Syndrome

Part Two What Kind Of Person Is A Thriver?

Number-One Reason Given For Thriving: Personality Traits

Number-Two Reason Given For Thriving: Beliefs, Philosophy, And Purpose

Number-Three Reason Given For Thriving: Parental Support, Support Of Family, Friends, And Other Resources

Part Three My Findings

Two Big Ideas—The First Big Idea: Thriving Occurs In Context

The Second Big Idea: Thrivers Live From The Inside Out

Special Blessing Just For You

Appendices

Appendix I

Appendix II

Appendix III

Notes

Bibliography

Book Club Discussion Questions

To those thrivers who generously shared their life

stories with me and to the unsung thrivers everywhere

who I hope to know and honor in the future

Thriving is like a string of pearls whose rarity, beauty, and luster are born from grit and, when linked, enhance the qualities of each. Look for the blessing hidden within the rough oyster shell of your life, and experience the sustaining grace of connection.

FOREWORD

Thriving through It: How They Do It was written by one who did, Joyce Tepley, a survivor who thrived through the debilitating and physically crippling aftermath from a childhood attack of infantile paralysis.

When we see someone with physical difficulties, especially those visible at a glance, we often wonder how he or she manages. Is he or she happy? Did he or she get married? Can he or she work? What is his or her life like? In essence, how does he or she do it? How does he or she deal with his or her handicap?

We can’t ask. We don’t know the questions even if we have the courage. Virtually no information is written about how people cope with handicaps. There is even less surrounding their internal set-points, the characteristics they believed helped them. What helped them create the courage and stamina to prosper, to succeed when life was difficult for the best equipped of people? The literature available is generally anecdotal about one person, or a research project is so filled with statistics that the average person doesn’t want to bother with it.

Not so here. Tepley took a group of people with an average age of fifty. Almost all were disabled congenitally or before the age of twenty. They had all passed through several of the usual life landmarks. They were of different backgrounds and ethnic heritages and had a wide range of education. In essence, she had a microcosm of American society. Their commonality was that they had succeeded despite severe physical limitations. She talked with them, gave them a standard questionnaire, and recorded what they said. Here is what she found.

Every person recognized he or she had triumphed. In one of Tepley’s appendices, each person felt as though he or she had personality traits that were the key to thriving. They felt as though they had worked hard to succeed, and they recognized that hard work was important. The characteristics of hard work and self-determination are often underplayed, underappreciated, and usually not given as viable goals for anyone, let alone to a person with a significant disability. Yet each cited this mind-set as highly important. A supportive family was also high on the list of elements that helped them succeed, but below their own work, efforts, and determination.

In her short introduction to each interviewee, Tepley asked, Did you thrive because of or in spite of your disability? The responses were evenly split between because of and in spite of, with a few saying some variation of not relevant. She then used their own words as they reflected on the overall effects of their disability in their successes.

All of this rang true for me, a nondisabled person who grew up with a father permanently disabled from his bout with polio at age seventeen. My dad, Milton Erickson, MD, was raised on a Wisconsin farm in the 1920s and became a leader in hypnosis and psychotherapy methods. He also believed his success, his thriving, was because of and in spite of his disability. He firmly felt his own personality and hard work were critical components to his achievements. To me, the thrivers in this book exemplify the best of the human spirit: a can-do attitude and disability will not be a handicap.

In her personal story, Tepley writes about the necessity of having a story for one’s life. Thrivers have stories of quests and journeys, of conflicts and hard work to conquer. Every subject in her book follows this theme. She uses it as a self-guiding principle.

Thriving through It: How They Do It was not written to be inspirational. I, for one, was glad. Only that way could it serve the higher purpose of asking successful people, What made you successful? Paradoxically, that question is the most inspiring part of the book.

Betty Alice Erickson, LPC, LMFT

Dallas, Texas

PREFACE

This book is about thriving, what it takes to do well in life despite and because of the difficulties small and large that vex you. It is also about my search for a continuing process of growing in strength and wisdom. I met some fascinating thrivers along the way whose stories are contained within.

Did I discover any secrets from them that I can pass on, making it easier to get through life’s challenges? Is there anything I learned that would give comfort or inspiration? Before plunging into the main part of this book, I will talk about how I got started and introduce the research this book is based on.

In 1999, I applied and was selected to participate in a fellowship program called Creating Healthy Communities sponsored by The HealthCare Forum in San Francisco, California. This yearlong program focused on developing leaders who [could] advance a new vision of community health. The American Hospital Association sponsored the Forum. Unlike most of my fellow classmates who were managers of large health-care facilities, hospitals, and organizations, I was there to do an individual study. I had no sponsorship, only a desire to answer two simple questions: Why do some people thrive through adversity? What do the thrivers themselves say are the reasons they thrive?

Three factors motivated me: my work, my experience in being a health-care advocate for my invalid father-in-law, and my own health struggles as a person with a disability. I was also caught by a vision Walt Disney had of building a community specifically around the idea of supporting the health of its individuals. An article about the building of Celebration USA in Florida just happened to find its way into my life at the time I most needed it to start me on, what would turn out to be, a journey lasting the rest of my life.

As a clinical social worker in private practice dedicated to helping people deal with the difficulties in their relationships and emotional reactions to the hardships life throws at them, I observed how some people were more resilient and persevering than others were.

As a daughter-in-law willing to be an advocate for the respectful care of my father-in-law while his physical and mental capacity slowly deteriorated, moving from house to apartment, to assisted living, to full nursing care, to in and out of acute hospital care, to hospice, and then to death, I gnashed my teeth and railed at the lack of coordination and disregard for his comfort. There should have been a better way.

As a person with a disability from childhood polio, I know firsthand what it takes to overcome paralysis and learn to walk again, to feel different and ugly as a teenager with a crooked back and leg braces, to work hard in school and graduate with honors though never quite feeling it was enough, to start my own career and live independently, and to find a loving husband, grow older, and become more accepting of myself and what life is all about.

For those reasons, I decided to apply for the fellowship and pursue answering the questions of why some people thrive and what it takes to do so, by interviewing people with long-term physical disabilities. I assumed they would have dramatic stories and their obvious disabilities would be a major influence in their lives as thrivers. Just like me, though, they were ordinary people. I simply wanted to see if they had anything in common with each other.

The following are how I set up the study, the demographics of the thrivers, and an overall conclusion:

• Twenty people referred to me were regarded as successful. Fourteen were women and six were men. The age range was thirty-seven to sixty-three. The average age was fifty. I wanted a core group of people to interview who had advanced through many life stages into an older adulthood.

• Fifteen were Caucasian, four were African American, and one was Hispanic. Most were born and raised in middle-class families, but four were born in poor financial circumstances. I was not able to interview anyone from an Asian background due to unavailability of referrals in that ethnic group during the time period of the study.

• Seventeen graduated from college or had some college courses. Two of the graduates had doctorates. One person did not finish grade school.

• Sixteen were working. Four were retired on Social Security or unable to work and living on Social Security Disability Income (SSDI). All of the interviewees volunteered their time helping others whether they worked or not. I thought this was remarkably significant.

• Eight were currently married, four were divorced, and eight were never married. Eight had children, and two were single parents.

• Fifteen had mobility impairments like polio, spinal cord injury, cerebral palsy, muscular dystrophy, rheumatoid arthritis, severe back pain due to injury, and neuromuscular atrophy. Two had sight and hearing impairments. Three had physiological disorders like sickle cell anemia and Dandy-Walker syndrome. Seven were born with their disability, seven were diagnosed before the age of nine, three were diagnosed in their teens, and three were in their thirties when injured. They all dealt with their disabilities over several life stages, which gave them enough experience to reach a level of acceptance and integration.

Note: All interviews were conducted and recorded over the telephone. I asked each thriver the same set of questions (appendix I), which produced over thirty hours of taped dialogue. My interviews were free flowing. I tried my best to keep everyone on track and answer all the questions, but I had to balance that against stifling the natural