Growing up with cystic fibrosis (CF) can best be described as an adventure. I'm proud to say that I've survived 43 years of this adventure, thanks to hard work, a lung donor 11 years ago, and opportunities for whole-person care. My identical twin, Ana, and I both had classic CF, where we had aggressive symptoms such as malnutrition, early colonization with Pseudomonas aeruginosa, hemoptysis, and sinus disease that required daily intensive respiratory therapy and frequent hospitalizations. I would like to share my story of how I coped with my illness using a whole-person and whole-systems approach.
My immigrant family provided the roots for a strong foundation to cope with illness. Both of my parents grew up in the aftermath of World War II in Germany and Japan. Their cultures taught me perseverance and discipline and most of all gratitude, even in the face of adversity. My sister shared my hatred of CF but became my greatest ally and confidante in this battle. My brother, who didn't have CF, became my “ego-ideal”—what I wanted to be like had I been born healthy.
My family coped with illness by emphasizing what was normal: school, academics, exercise as tolerated, travel, and hobbies. Hiking in Southern California's nature became our family's solace—away from the artificial medications, breathing machines, and plaster walls of the hospital rooms. Nature connected me to something much larger than myself. It also allowed me to bear witness to the cycles of birth and death that occur all around, without protest or anxiety, in the natural world. As a child, I was plagued with intense shyness, in part fueled by feeling different and by the deep-seated Japanese cultural belief that “the nail that stands up will quickly be hammered down.” Still, though, I found close childhood friends who cared more about playing than my coughing or the breaks I took to do treatments. Little did I know that my illness taught these friends a great deal about compassion and diversity of human experience. In part to deal with my shyness and my chronic worry, I asked for a Bible when I was 9 years old and began to use my faith to understand my life.
As a teenager, I attended CF camp, which I learned about from a magazine I was browsing while in line at the grocery store. At camp, I quickly learned that I wasn't alone in my struggle and that there were people who could truly and fully understand what I was going through. CF camp provided that magical place of belonging where I learned my self-worth and self-acceptance. I also learned that kids with CF died, and they died young. They died sooner if they didn't do their treatments—what better lesson could I have for compliance? And so that face-to-face confrontation with mortality forced me to grow up quickly—to set goals, to embrace relationships, to be the best person I could be, and to make the most of my time on earth.
My mother was trained as an artist, and she used to organize art projects at home. When I was 14, I initiated a T-shirt–painting project for my friends at CF camp. Days later, I was hospitalized and brought the unfinished T-shirts to my bedside. Nurses admired my painting, and soon enough, I started to paint T-shirts for the medical staff, charging $5 per shirt. Ana quickly joined me, and this launched “The T-Shirt Twins” business. This artistic outlet provided a healthy distraction to the dreadful days in the hospital.
In addition, on several occasions my mother would visit Ana and me in the hospital and bring us journals. She'd say, “Write. I want you to let your feelings out in this diary.” On one occasion, Ana started to write lists of hospital procedures, medications, roommates we'd had, even short stories of each hospital stay in the past. I joined her in this endeavor. Soon, nurses and doctors admired this writing and asked for copies of our book, Life at Kaiser. This marked the beginning of a lifelong habit of expressive writing to help deal with the inner struggles we experienced with illness.
Eventually, Ana and I left smoggy Los Angeles and went to Stanford University, knowing we would likely be too sick to graduate. As twins, we helped each other with chest percussion therapy so we could move away from home. We promised our parents we'd take good care of ourselves and take an exercise class each quarter. We both sought out psychotherapists to help us deal with being surrounded by future-oriented, high-achieving peers. We got baptized shortly after losing our best friend to CF. It was clear our future was bleak, and we hoped for an afterlife. Then came a clinical trial for deoxyribonuclease (DNase), which launched us both into newfound health. After college, we both taught English in Japan, where the CF care is dismal. Our parents mailed us our medications, and we overdosed on inhaled tobramycin to tame the infections in our lungs. Yet we could cross “seeing the world” off of our bucket lists.
Ana and I returned home for graduate school, where Ana studied genetic counseling and I studied public health and social work. Over the years, even DNase couldn't stave off the lung damage. Eventually, we both entered the world of end-stage disease. This was a time of great turmoil. We fought this disease with intense 1.5-hour treatments; we swam at the YMCA with oxygen; we pushed ourselves to exercise until our lungs bled. We sought out support groups at our local Cystic Fibrosis Research, Inc (CFRI) nonprofit to help us find peace and acceptance with this unfair lot. We participated in “The Breathing Room,” an artistic photography project where we took pictures of ourselves expressing CF. My photograph showed me in a bathtub soaking in CF paraphernalia—meds, tubing, nebulizers. We cried many tears, preparing to not only lose our lives but also to say goodbye to each other. Somehow, with great effort, we managed to finish graduate school.
There were two great consolations at this time. One was the choice to be listed for a lung transplant. The other was a greater miracle: my boyfriend from Stanford stood by me through all of this, accepting my coughing up mucus, gastrointestinal toxicity, my twin symbiosis, my limited future. He loved me, and I loved him, proving that illness invites a higher level of love. And in 2000, after my wedding, Ana received a successful lung transplant. She gave me great hope.
While I was on disability before my transplant, I found purpose and meaning by volunteering at CFRI. While volunteering, I gained skills that eventually would help me in the workplace. I also embarked on writing a memoir, which offered life review and gave me the drive to keep going. The writing provided me with a therapeutic catharsis to make peace with my life and to grieve all of my losses. Then, when the last chapter was being written, I was blessed to receive an 11th-hour lung transplant after a profound near-death experience.
Finally, Ana and I were both catapulted into normalcy: we both worked, traveled, and exercised freely without any coughing or shortness of breath. There are so few CF patients out there who receive this gift! Eventually, to give back, we volunteered for CF and organ donation. Eventually, our book The Power of Two was published. A few years later, it was translated into Japanese, and we went to Japan on a book tour and to advocate for CF care. The book was turned into a documentary film with the same title. Both the book and the film became tools for our patient advocacy work. Finally, we discovered there has been meaning to all of our struggles with CF.
Today, I am breathing well and gladly entering middle age. I do yoga regularly to help ease a lifetime of musculoskeletal aches and pains. I do acupuncture regularly to help my gut move. I swim and play the bagpipes to honor my lung donor and to keep my lungs open and healthy. I speak regularly about CF and organ donation—this narrative therapy has been so validating. I pray regularly and practice mindfulness so my own thoughts do not add to my suffering. I teach “writing through loss” groups so that others can benefit from the creative expression I have had through writing. Both Ana and I have lived full lives, thanks to our environments, our social ties, and our intellectual, emotional, and spiritual resources. We have been so fortunate to have access to the medical systems that have sustained us.
Sadly, I lost my twin and best friend in September 2013, not to CF, not to lung rejection, but to cancer. I give thanks that Ana left me when I was ready—when I had the maturity, faith, and emotional stability to survive on my own. Working as a bereavement counselor in hospice has eased my grief and reminded me that I am simply living the human condition. What an adventure.
Biography
Isabel Stenzel Byrnes, MSW, MPH, works at Mission Hospice and lives in Redwood City, California with her husband of 17 years, Andrew Byrnes. Together with her twin Anabel, she has published a memoir, The Power of Two: A Twin Triumph over Cystic Fibrosis (University of Missouri Press, 2014) and was featured in a documentary film of the same title.