Robbery and Redemption

Cancer as Identity Theft

Craig Fiedler, Kent Koppelman, Kent L Koppelman

• Publisher: Routledge
• Year: 2017
• Print ISBN: 9780895034731
• eBook ISBN: 9781351860031
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

First Published in 2017. This volume is a totally candid account about the facts and feelings surrounding the diagnosis of and battle against lung cancer—a battle the author waged with every ounce of his being. It has an enlightening quality because he shares how he transformed his previous knowledge of family dynamics, coping strategies, and empowerment into wisdom. He shares his journey of taking the knowledge from the Before Cancer phase of his life, "and like an alchemist, converting one raw material—his life and his diagnosis and battle—into an element quite unlike the original. Robbery and Redemption: Cancer as Identity Theft is chock-full of wisdom that has been learned the old fashioned, visceral way—from lived experience and keen reflection. This personal, upfront, "rubber-hit-the-road" treatise is a gift from the author to each reader. It is his wise interpretation of his own experiences of integrating values, problem solving, and coping strategies.

CHAPTER 1
The Dream

I like to dream. For me, dreaming has always been like going to the movies, only there were no admission fees or exorbitant prices for popcorn and soda. I was never especially analytical about any deep psychological meanings to my dreams; I simply enjoyed them, most of them anyway.

I had not been enjoying any nighttime dreams for several months, at least none that could be remembered the next morning. I could not understand why. Perhaps it was a result of stress, exhaustion, lack of ability to shut my brain off from day-to-day issues, or perhaps I was just no longer meant to be a dreamer.

It was mid-March of 2008 when my wife, Sheri, and I decided to stay at our cabin in northern Wisconsin for a weekend when I finally broke through my “dream barrier.” That did not surprise me; it was normal for me to sleep better at the cabin. It is very dark because there are no streetlights, and very little noise because only a few houses are close to ours. We arrived on Friday, and on Saturday night I was lying in bed reading before going to sleep as is my normal routine. After turning off the light around 11:00 p.m., sleep came quickly and the dream came to me in a misty shroud. I was able to remember the outline of the dream because I woke up right after having it. A glance at the clock told me that it was 4:00 a.m. Unable to get back to sleep for the rest of the night, I sat in bed and mulled over the events in the dream, trying to make sense of it. At first, it didn’t seem as if the dream really applied to me. Later, the dream would seem to be a harbinger of the changes I was soon to experience as a result of my lung cancer diagnosis less than 2 months earlier.

The essence of the dream involved a man, but it clearly was not me, in fact, it was nobody whom I could readily identify. For purposes of storytelling, let’s call this man Michael. Michael was living a comfortable and successful life. He had a loving wife, three children, and a successful and satisfying career. He was not prepared for the way his life was about to change dramatically. Michael lost his identity, both personal and professional. Another person subsumed his life and identity, and it was as if Michael never existed. Michael’s experience was similar to that of the Jimmy Stewart character, George Bailey, in the Frank Capra movie, It’s a Wonderful Life. In that classic film, a distraught and suicidal George Bailey is saved by his guardian angel, Clarence. Clarence shows George what life in his hometown of Bedford Falls would be like if George had never been born. George wanders around in a stupor and can barely recognize his hometown. Nobody, not his wife, mother, or friends, are able to identify him because he was never born. This experience demonstrates the impact George had on so many people. He understands that he is not a failure and has gained a new appreciation for his life when Clarence returns him to it. Unlike reality, Hollywood films can have a happy ending.

Unfortunately for Michael, there was no happy ending in my dream. Like George Bailey, he wandered unrecognized in a world as if he had never existed. Michael was devastated and lost. How does one restore a lost identity? Restore one’s life? In my dream, there was no resolution for Michael. The dream simply ended with his life and identity shattered, lost to him forever.

By the time I got up the next morning, it had become apparent that the dream had, indeed, been about me, symbolizing my struggle with the recent diagnosis of lung cancer. It was as if the person I had been prior to January of 2008, no longer existed. In a matter of 2 weeks, as the requisite tests were conducted that led to the terminal lung cancer diagnosis, my life was forever and unalterably changed:

I took a medical leave of absence from my teaching position at the university.

—I was no longer a professor.

My plans for writing a new book on special education during my sabbatical the following year, were now completely up in the air.

—I was no longer an author.

I had to step down from my position as department chair.

—I was no longer an administrator.

I had always been healthy, never missing a class due to an illness.

—I was now sick; a “patient” who was being examined, poked, and prodded by lots of medical personnel.

My wife and I had been planning on retiring in the next few years and looking forward to splitting our time between our cabin in northern Wisconsin and a recently purchased new home just south of Tucson, Arizona.

—My retirement and how long I might live to enjoy it were now in serious jeopardy.

It had always been important to me to take care of myself and fulfill my respon-sibilities as a faculty member, husband, and father, but after starting chemotherapy and radiation, I lacked the energy to do simple household chores.

—I was no longer an independent person but had to rely on my wife as my caregiver.

In addition to nocturnal dreams, we all dream about our future. Most people have typical childhood dreams, and later adult ones where you fantasize about all of the great possibilities for your future and all that you hope to accomplish as you grow older. And I had lots of those fantasy dreams. As a child growing up in La Crosse, Wisconsin, my first dream was to become a star athlete. The 1950s and ‘60s were a good time to grow up. In my neighborhood, we always had plenty of kids to organize our own baseball, basketball, or football games. The only way our games ended was when we heard our mothers’ voices calling their children home for dinner. First one, then another, and eventually we would lose so many players that the game would end. As I drive through neighborhoods now, the front lawns and playgrounds are “ghost towns” of missing children. Except they are not missing. Everyone knows where they are. Instead of kids playing games they have organized on their own, children today participate in adult-organized activities or in isolated or parallel-play computer games. Perhaps they’re having as much fun as I did, but I still feel grateful for growing up in the 1950s and ‘60s.

I was competent in some sports such as baseball, basketball, and football, but I had the misfortune of attending a large high school where there were many athletes better than I was who got the letter jackets and garnered all of the female adulation. As a consequence, not only did my true athletic prowess go unrecognized, my dating life suffered. As an adolescent, I had romantic fantasies about finding that one special woman, and we would live a fairy tale existence of eternal bliss. Instead, from junior high, high school, college, law school and my early career as a lawyer, I experienced one romantic disappointment after another. I became a serial relationship casualty. My romantic luck finally changed just before turning 29 when I met Sharon (Sheri to her close friends), who would become my wife. She would undoubtedly snicker at my reference to being an “adolescent romantic” because over the years she has regularly accused me of not being romantic enough. Like a lot of other men, I have not been attentive enough to small things like bringing her flowers unexpectedly or giving her a big hug and kiss for no particular reason. So, my plea is guilty as charged, and it is just one more accumulating piece of evidence of how much most of us take for granted in our lives—our health, our loved ones, our career, our longevity.

When pursuing a bachelor’s degree in economics in college, I dreamed of becoming a lawyer. The romantic in me envisioned myself as the champion of the disenfranchised, the poor and downtrodden, fighting for social justice. After college, I actually pursued this dream by attending law school, graduating from the University of Wisconsin in 1977, and I tried to become a champion of the poor and disenfranchised. My first job out of law school was as a legal services attorney in the heart of Appalachia. For 2 years I worked in the legal services office in southeastern Kentucky, representing low-income individuals in a number of civil legal matters—domestic relations, consumer claims, social security disability, black lung benefits, environmental litigation against strip mine coal companies, and other assorted legal issues. My legal services experience provided me with quite an education. Growing up in Wisconsin, my notion of poverty was based on people who lived on the north side of La Crosse, where some houses needed painting and the yards looked untidy at times. After moving to Appalachia and meeting some of my low-income clients, I discovered what an insulated and naive existence I had lived. Some lived in tar paper shacks that technically qualified as residences but offered very little protection against the elements. Hopefully my legal expertise and skills helped some people there, but my only certain conclusion is that I was the main beneficiary of that 2-year experience. It shaped much of my thinking and my perspective on social and political issues. In the years since then, my activities have been focused on remaining true to the values that were inculcated in me as a result of that experience.

In the summer of 1979, I moved back to my hometown. A legal services program was being established in La Crosse and they hired me as a staff attorney. After about 5 months in that position, I realized that being a lawyer for the next 40 years was not appealing to me. Thus began a period of self-examination, some would call it a career crisis, and for several months I searched for another career that fit my skills and my temperament. In the spring of 1980, I was fortunate to find a position coordinating a volunteer program for individuals with disabilities. At La Crosse Citizen Advocacy, my primary task was to recruit local volunteers, match them with children and adults with disabilities, and train them to be advocates for their partners. The program also provided support to those in matched relationships. This turned out to be a good job for me. I was able to use some of my legal skills and hold true to many of the values formed during my days in Appalachia—community development, individual empowerment, social justice, inclusion, acceptance and celebration of human differences. As if this wasn’t enough, my good luck even extended to my social life because I met Sheri, who served as one of the parents on the program’s advisory committee. Sheri was recently divorced and the single parent of a 2-year-old daughter, Jennifer, who was born with severe and multiple disabilities. I fell in love with both of them at about the same time.

As serendipity works, when I began as coordinator for the Citizen Advocacy Program, another individual on the advisory committee was Stu Robertshaw. Stu was a professor of special education at the University of Wisconsin-La Crosse (UWL), and a few years earlier he had taken a sabbatical to earn a law degree from the University of Wisconsin-Madison. With his professional background, he was a major asset to the committee, but I especially appreciated him because he had tons of energy and an infectious laugh. As my friendship with Stu developed, he encouraged me to think about following his example by getting an advanced degree in special education to combine with my law background. With his assistance, I completed a teaching credential in secondary social studies and then enrolled in the master’s program in special education at UWL. Although continuing in my full-time position as advocacy program coordinator, for 2 years I was also a part-time student until I completed my master’s degree. It was now the summer of 1982, and being back in college had reminded me how enjoyable the life of a student could be and how well I performed in that role. After graduating with the master’s degree, the question was whether to seek a special education teaching job in the public schools first or proceed right to a doctoral program in special education.

By this time, I had decided that my long-term goal was to teach at a univer-sity, so with Stu’s encouragement, I applied to the doctoral program at Kansas University (KU). This program is perennially rated as the best graduate program in special education, and deservedly so. My application stated my intention of combining my legal background with an emphasis on family and policy studies and emotional/behavioral disorders. Not only did Kansas accept me, they gave me a research assistantship working on a grant project to foster the inclusion of students with disabilities into general education settings.

One of the best things about being at KU was the opportunity to work under the most able guidance of nationally recognized faculty such as Drs. Rich Simpson, Richard Whelan, Ann Turnbull, and Rud Turnbull. I relished my 3-year doctoral education at Kansas, but as it was coming to an end, reality intruded with my discovery that there was no pension program for full-time students. At the tender age of 33 years old, it would be necessary for me to venture back into the job market and face the inevitable stress of finding someone to employ me. That “someone” turned out to be the University of New Hampshire at Durham.

It was the summer of 1985, and by now Sheri and I were married. With my recently bestowed PhD in hand, we carted our few belongings in a U-Haul from Kansas City to New Hampshire with 8-year-old Jennifer. We moved into a rental duplex in Dover, about 10 miles from Durham, and before long, Sheri and I were celebrating the birth of our second daughter, Lindsay. Although we enjoyed New England, especially living only 10 miles from the ocean, we quickly discovered that we could not afford to raise a family on my university salary given the high cost of living in the area. After 2 years of teaching a number of special education courses at the University of New Hampshire, I was offered an opportunity to move back to Wisconsin. I accepted a faculty position in special education at the University of Wisconsin-Oshkosh (UWO), where I have been a professor (with a couple of interim administrative assignments) for 21 years. My career dream had been realized. I enjoyed teaching, research, and writing, and my efforts were acknowledged with several university awards over the years.

Since Sheri and I tend to be workaholics, we decided to purchase a little “get away” place in northern Wisconsin so we could relax a bit on weekends. We discovered that we could not afford lake frontage property, but that was not important since we were looking for a retreat that offered privacy and seclusion. In the summer of 1993, we bought a cabin and two acres of a wooded lot, and for the next 3 years we purchased adjoining parcels of land on both sides of our cabin until we owned about seven acres around the cabin. My father-in-law stayed at our cabin for the first three summers, then he purchased a five-acre parcel of land right behind us and bought an old trailer that he lived in during the summer. The rest of the year he lived in a condominium in Phoenix, Arizona. At first, he did not have electricity in the trailer because he refused to pay the electric company to run a line to his property. I am not implying that my father-in-law was a little frugal with money, but as an example of his pecuniary ways, he ran an extension cord over 200 yards from an outside electrical outlet on our cabin to his trailer.

Craig and Sheri get married (with daughter Jennifer).

In 1997, my father-in-law was diagnosed with stage IV lung cancer. He had been a smoker but quit a number of years ago. By late December, only 2 months after being told of his cancer, he was dead at the age of 66. Sheri was just getting to know her father once again after several years of estrangement, so this was an especially devastating loss for her. Sheri and her brother inherited their father’s five acres, and having this land seemed to give her a continuing connection to her father and to provide her with a measure of comfort.

In 2001, Sheri and I decided to add a bilevel addition to the original 600 square foot cabin. This addition almost tripled the size of our little “get away” place and made our Northwood’s retreat even more comfortable. Almost every weekend from Memorial Day to Labor Day we made the 3-hour drive to our cabin. It has been a wise investment because it has helped to counter our workaholic tendencies as we had hoped. We loved being able to sit on our second floor deck and not see another house. We loved watching our English Springer Spaniel run in the woods. At least we did until Spencer tried to befriend a porcupine and came yelping back to the cabin with about 100 quills stuck in his head, including several in his mouth. The veterinarian had to give him a general anesthetic to extract all of the porcupine quills. Months later we were still discovering a few hidden quills. Unlike poor Spencer, my life seemed charmed for the first 55 years, and I felt blessed by all that had been given to me.

Spencer—Craig’s first and favorite English Springer Spaniel.

Achieving so many of my childhood, adolescent, and adult dreams served as a prelude for understanding my life to date. But in addition to dreams for the future, there are also simply the dreams that come during sleep, and about 7 years ago it occurred to me that I had not had such dreams in a long time, and I missed them. This was one of the few areas of my life that did not seem right. Since sleep researchers have determined that most dreams occur during rapid eye movement (REM) sleep stages, it concerned me that I perhaps was not experiencing REM sleep. Being very restless at night, my sleep tends to come in short spurts throughout the night. According to my wife, my snoring is quite loud, but fortunately she is virtually deaf in one ear so she can bury her good ear into the pillow to effectively block the sounds of the locomotive sleeping next to her. Several years ago, Sheri noticed that I would regularly stop breathing while sleeping, and then after a few seconds wake up gasping for air. With her encouragement, I went to a sleep disorders clinic and was diagnosed as having sleep apnea. During my “diagnostic sleepover,” I stopped breathing over 100 times.

The standard treatment for sleep apnea is a bedside contraption called a con-tinuous positive airway pressure (CPAP) machine. Continuous positive airway pressure therapy uses a machine to help a person with obstructive sleep apnea breathe more easily during sleep. A CPAP machine increases air pressure in your throat so that your airway does not collapse when you breathe in. It probably also prevents impending divorces from sleep-deprived partners. The machine sits on a nightstand ...

Table of contents

• Cover
• Title Page
• Copyright Page
• Table of Contents
• Foreword
• Acknowledgments
• Introduction
• Chapter 1 The Dream
• Chapter 2 Through the Looking Glass
• Chapter 3 The Cancer Journey and Detours Along the Way
• Chapter 4 Resolving to Battle the Bully
• Chapter 5 Communicating with Cancer
• Chapter 6 Trying To Be An “Exceptional Patient”
• Chapter 7 A Cancer Apprentice: Lessons in Redemption
• Epilogue: Remembering Craig
• Index