Editor’s Note: Courage to Shine™ is honored to present the original story of Joanna Burgess’s amazing and inspirational life. Joanna originally submitted the following story to be published in a major national magazine, but the magazine elected not to publish it, however their loss is Courage to Shine’s gain. Joanna Burgess is a nurse, a cancer survivor, a wife and the 2011 Great Comebacks® South Region Award Recipient and you can find out more about Joanna Burgess at here
Joy’s Way – A Journey of Survival, Hope and Inspiration
By Joanna J. Burgess
As I stand at the podium, looking out over an audience of my nursing colleagues and people who have survived life changing illnesses, a memory from long ago comes to mind. In my memory I feel peaceful, surrounded by a darkness that is full of flecks of sparkling light. I have a sense that I am floating. I see myself reaching, extending my right arm toward some form of light. I feel content. I am flying toward something unknown, and yet somehow known. I am like an angel, with the tips of my wings resting on water, reaching up to move forward yet seeing ripples in the water below created by the part of me that is not yet ready to take flight. I breathe and I am home. Whether a dream or vision I cannot say, yet I have had this memory since long before I could articulate it. The memory exists in the periphery of my mind, and if I try to see it too clearly or directly, the image fades and then vanishes. But more important than the vision itself, I have carried throughout my life the memory of the feelings evoked by this vision. The essence of those feelings is in the knowing that I do not walk alone. In the decorated banquet hall in Chattanooga, Tennessee, I again want to reach my arm up to the source of the light, to say thank you. Thank you for getting me to this place. I want to steadily and calmly express all that I need to say of hope, survival and gratitude. I hold up my forefinger in front of the 200 waiting faces, a sign that I need a minute. I take a deep breath and start to tell my story. It is the reason I have been asked to be here and to be a face of inspiration to others.
As a little girl I loved new shoes. Every Easter I would get a gift, a new pair of fancy shoes to wear with my new Easter dress, hat, and gloves. My father was the Methodist minister of our community and we lived in a parsonage home where my family’s house was connected to the church by a small foot bridge. I can see myself, six years old, when I received my first pair of red patent leather dress shoes. I dance, clickity-clack clickity-clack tap tap tap, on the foot bridge – the place where I always initiated my new shoes. For me, that foot bridge was symbolic of a connection between two worlds – my home where I had the intimacy of family, and my church where I found a community of loving arms always ready to scoop me up. The foot bridge was the perfect place to celebrate my life with dance. Clickity-clack clickity-clack tap tap tap. I’m smiling and laughing in wonder and awe at the most spectacular shoes I have ever seen. No one would have guessed watching me in that moment of apparent delight that I also danced with a longing to meet someone who was just like me.
In December of 1965, after I had just turned three, my mother started noticing blood in my urine. A trip to our local family doctor would change all of our lives. My parents were told that I had a very rare form of bladder cancer with a 10% survival rate. I can only imagine what my parents must have felt hearing that collection of words. (I would learn later in life after obtaining my medical records that the cancer had a name – rhabdomyosarcoma, meaning a fast growing highly malignant tumor of the soft tissues). My father was a young new minister in upstate NY and my mother was a kindergarten teacher at a local school. They had no medical background and had never faced a medical crisis. My parents were asked to place the trust of my life into the hands of the medical professionals. They had no other options. My father would later tell me that handing your child over to the unknown rocks the foundation of your world. They had to make the choice to agree with decisions made by my medical team that would affect my life in known and unknown ways. Feeling broken and torn, my father went to a small chapel and screamed to God, pleading that my life be saved. At Boston Children’s Hospital, in the ward where my crib-like bed was, I would sense that same anguish again and again from the parents of other children, children with cancer, burns, and other life altering physical traumas. Instead of screams, they were whispered prayers in the night over sleeping children. I believe that I absorbed the energy of those thoughts and feelings, from parent to child and child to parent, into my subconscious ultimately shaping the person that I would become.
Boston Children’s Hospital was a four hour drive from my home in upstate New York. My cancer therapy included investigational chemotherapy sponsored by a private organization affiliated with the hospital and high doses of cobalt radiation which caused third degree burns on my lower back. Treatment also included the removal of my bladder and the creation of a urostomy, a way to divert urine by connecting the ureters to a conduit made out of the small bowel which is then brought to the outside of the abdomen through a surgically created opening called a stoma. A bag is worn over the stoma to collect the urine.
People ask about my memories of that time. I tell them that I mainly remember the “fun” things about having cancer. I would spend countless hours in the “go-carts,” a special kind of wheel chair designed for wheeling the children around the hospital corridors and grounds. My father would wheel me up and down the long hallways and sing to me with his deep booming minister’s voice, “Train to the farm, chugga chugga choo choo.” There were mountains of cards from my church that my parents would read to me and I remember my sister bringing me a cherished gift of one of her beloved dolls.
But the treatments had many side effects that would continue to manifest for years. My father became the primary caretaker of my ostomy and radiation burns. When my burns were at their most severe state, he would have to sleep by my side at night to make sure I didn’t roll over and disturb the bandages. Later, in my growth years, I experienced bone pain, and difficulties with my colon causing many “stomach aches” and trips to the emergency room. For each of these events my father would end up reliving the pain of the day he learned of my cancer diagnosis. In a very real sense, he became a wounded warrior. His devotion to the care of my physical wounds was courageous but it truly left him heartbroken to see the pain I endured. To this day it is still a very raw experience for him. Even now, on the brink of turning 80, he still cannot talk about this experience without crying. He has told me that he has never fully recovered from his own emotional wounds from my cancer therapy, and that he really does not want to, for those wounds are an integral part of him. They have shaped him into the person that he wants to be, a sensitive father, husband and caretaker of the people that reach out to him in his community.
My mother’s gifts to me were very different than my father’s. Like so many people who come face to face with a terrifying medical diagnosis, she was terribly afraid of my ostomy and my burns. Because of this fear, and my father’s willingness to bear that burden for her, she was actually better able to see me beyond my illness. Her distance from my wounds allowed her to see my greatness without any limitations. Together we would get lost in a world of great imagination, storytelling, dance, creativity, music and art. This gave me a freedom to joyfully explore and embrace my life. My mother said when I was born, she saw and felt joy. So she chose Joy for my middle name. And she would make certain that cancer would not erase my joy. Dancing on that footbridge in my little red shoes – anyone could see that she was succeeding. When I was about 8, my mother and I created a small hospital in our basement. My little doll beds were lined up into two rows. We made IV bottles from empty drink bottles and tubing I found in my father’s workshop. Some of the beds had oxygen tents made from plastic wrap. All of my stuffed animals had their own charts where I recorded their vital signs. My mother and I made up names of diseases that we put on empty pill bottles. I immersed myself into this world we had created in the basement and all I wanted to think about was becoming a nurse. As I grew older my mother worked out a way for me to change my clothes without revealing my ostomy and bag. She then encouraged me to go to slumber parties. She encouraged me to learn to play the piano (really a must for a minister’s daughter) and to play the flute in the concert band and even the marching band. And when I was chosen for the lead in my junior high school play, she helped me learn my lines. These many small accomplishments established in me a foundation for the self confidence I would need later on in my life.
In that little homemade basement hospital, a seed was sown that in 1981 would come to fruition when I was accepted into nursing school at West Virginia Wesleyan College. I completed my BSN in 1985. My first nursing position was at Duke Hospital in the Department of Pediatrics. It was then that I obtained my medical records from Boston Childrens and first saw the word “rhabdomyosarcoma” as my diagnosis. This “rare cancer,” as I had always heard it referred to, had a name! For the first time I felt a personal connection to this particular cancer and in an odd way felt as if I had discovered a treasure buried deep in a pile of medical records. I had wanted to know this cancer and I had needed it to have a name – and now it did. I wanted to better understand how it had become a part of me and how it had affected my life. I stood transfixed, holding those papers as I began to appreciate what I had survived.
During my first year of nursing I had the opportunity to work with a three year old boy who had been newly diagnosed with rhabdomyosarcoma. He was facing many of the same things that I faced -chemotherapy, radiation therapy and a urostomy. His parents, although both in the medical field, were nonetheless devastated by the diagnosis. Like my own parents, they too were fearful of the diagnosis and fearful of their son having a urostomy, believing that it would change his personality and limit his opportunities. A good friend encouraged me to share my story with them. I had never before shared this part of my life with anyone beyond my family and close friends. But seeing this family’s daily devastation moved me. I walked into their room, a “normal looking” nurse, and walked out with a lifelong bond and connection. We remain in contact to this day sharing letters and stories and being a support for each other. They have given me insight into what my parents must have faced and I have offered them hope and guidance along their own journey.
By the time I was thirty, my body began to significantly break down, a result of the high dose cobalt radiation. These were things that were not anticipated back in 1965. I was experiencing bone necrosis in my hips and would ultimately need to have hip replacement surgery. My right leg had developed lymphedema and had swollen to double its normal size. Both conditions were beginning to cause me difficulty in walking and it was not known if surgery would restore my ability to walk comfortably or even allow me to walk at all. Furthermore, I was beginning to experience colitis symptoms which at times were unbearable. Fearful about my future, I was not yet ready to face the medical decisions ahead of me. At times in my life when I have felt uncertain of what to do I have tended to take a pause and retreat to an entirely different path. I had always wanted to experience life in a different culture and suddenly an opportunity came my way. I had been given the name of a nurse practitioner in Honduras who ran a medical clinic and was looking for assistance. Despite my growing medical problems, I knew that I needed to be there. Packing up my personal medical supplies, a book of Spanish medical vocabulary and a guidebook called When There Is No Doctor. I went to Honduras and found myself living high above the clouds in the Merendon Mountains where I lived for seven months. My work at the clinic involved keeping the daily events organized and dispensing countless amounts of cold medicine and anti parasitic drugs. Although it took me 45 minutes to make the 10 minute walk between the clinic and the home I shared with the nurse, I made my way, step by step, every day.
Although it was the medical work at the clinic that called me to Honduras, it became the love of the Honduran people that kept me there in spite of my increasing medical problems. These were happy people who sat in darkness at night in their mud and straw homes and shared the stories of their lives. They taught me to make tortillas on their mud stoves. They showed me how to get good rest swinging in a hammock. The children sang and danced around me in their bare and calloused feet and with an innate compassion, they walked with me step by step at a slow pace up and down the steep roads. They helped me learn the endurance that I would need to face all the surgeries that were coming my way. In their small church they would sing, “I will walk with the wings of angels; I will walk and not grow weary.” These would become the words that I would remember as I returned home to face my first surgery and the years of healing to follow.
Over the next two years, I ended up having multiple surgeries beginning with the anticipated bilateral hip replacements for bone necrosis. But beyond that, and not expected was plastic surgery to my lower back to replace skin destroyed by radiation burns, bilateral aortic bypass grafts for necrosis of the main blood vessels to my legs, and a colostomy for radiation induced colitis. Prior to having the colostomy surgery I sobbed in the hospital waiting room on my sisters shoulders. I didn’t know if I could handle another surgery, especially one that would cause yet another alteration of my physical body. I tell people that this is the part of having cancer that I truly remember; the difficulties of emotionally preparing for surgery, facing unknown outcomes and excruciating pain and then the years of recovery that would follow. It would leave me unable to work for almost 20 years.
It was over the long course of my healing that I began to recall memories of my childhood experiences that had been pushed into my subconscious mind. I remembered being with other sick children who had returned to the hospital for a “check up”. We would be taken one by one behind closed doors to have an IV started. I remember hearing the screams of the children and seeing the worried looks of parents waiting for them. At around the age of five, I chose to not cry during these painful IV sticks so that I wouldn’t make others uncomfortable. I also remember the nights of anguish I would feel in preparing for the trip to Boston for those return checkups. As I relived these and other memories I began to release those unshed tears from so many years before and to grieve for the losses I had experienced. I ached for the trauma my father had experienced. I longed to know the girl that would have been had she never gotten sick. I had once been told that my small 4’11” frame would have actually stood tall at 5’9”. Where was that girl?? I wanted her back. I wanted a “normal” life free from pain and surgery. I had lost my joy so beautifully bestowed by my mother. Finally one night, in the depths of pain and exhausted from tears, once again I saw that light from long ago. It lingered in my bedroom until I felt peaceful and comforted. I felt that it was telling me that I would find my joy again. I just needed to ask for it and believe once again in my greatness. It came to my mind that my life really was a series of beautifully chosen paths of self discovery, a steadfast walk, and a journey. I had survived a life altering illness and had grieved my losses. I was ready to run toward life again and I wanted to understand my life.
Unable yet to walk after my hip and back surgeries, I became intrigued by the healing arts. I studied massage therapy and through this discipline I came to learn a treatment for lymphedema which greatly improved my condition, restoring my leg to a more normal size. This stirred a passion in me to become an advocate for patients with lymphedema which in turn led me to volunteer my time partnering in the creation of a private lymphedema clinic, the first one in North Carolina. Following my passion and seeking joy was beginning to touch every level of my being. I was not merely a wounded body, I was a body, mind and spirit remembering who I wanted to be, with a purpose to heal and be healed.
Finding a purpose in life was as lifesaving for me as were my family and the many friends who nurtured me along the way. However, despite always being surrounded by people who loved me, I felt a deep loneliness. Most of my friends and colleagues were dating, getting married and starting their own families. I knew that having children would not be a possibility for my life and I often wondered if anyone would ever truly love a person with two ostomies and significant scars mapping out a life of physical illness. Recognizing that I needed assistance I sought out a life coach who helped me to navigate the world of dating. She encouraged me and validated me as a loving person who deserved to be loved. As my self confidence began to grow, it would be a change of perception that would become my true miracle when on a nature based retreat I learned to use nature as a symbol for my life. I was in Evergreen Colorado, high up among the bristle cone pine trees which stand bent and disfigured. Although they are not tall and straight, they survive the harsh climate by bending and twisting according to the way the wind moves them. Their strength and stamina for enduring even the harshest of conditions have made them among the oldest living organisms in the world. I came to see these trees as beautiful and a symbol of my own survival. I came to know my truth; that I too was uniquely beautiful. I believed that one day I would find love and that person would also see me as truly beautiful. Five years ago I met my husband who has been a firm foundation under my feet. He loves me completely including my ostomies, my unique way of walking and my swollen leg. Maybe it is the engineer in him but I actually think he finds it all quite fascinating. I don’t know what it is about love, but it has also physically changed me. When I first met my husband I weighed 90 pounds. I have since gained 15 pounds! Love has put meat on my bones and I love my new shape. We were married on a beautiful warm October day a little over a year ago. My father, playing dual role of dad and minister, walked me down a grassy path lined by my friends and family to a beautifully decorated gazebo. He walked me to the waiting arms of my love named Ross and then proceeded to marry us.
Walking proudly with love in my life and a new found strength, after 20 years of healing from multiple surgeries and being told that I was too frail to work, I went back to school to learn a specialty in nursing. In 2008 I became certified in wound, ostomy and continence nursing (WOCN). I have been a WOCN in a small hospital now for three years and have received great joy in being able to offer my patients hope in the face of devastating illnesses. Many of my patients are new to their ostomy journey. Most are fearful and devastated and can’t imagine living a life with an ostomy – whether it be temporary or permanent. Some have a new ostomy due to cancer and they often find the ostomy more difficult to deal with than the cancer diagnosis. Whatever the reason for the ostomy, people often feel a sense of shame at the way their body has been altered in order to heal. I am honored to be able to tell these patients my story and to offer the hope that they too will adapt and learn to not just live but thrive while living with an ostomy. I have learned that with every patient I see, I also experience personal healing. I believe that if you truly give to another human being, you will in turn receive the gift of self compassion.
People who have survived devastating illnesses often experience a unique kind of joy in life. I, too, feel that sense of joy. It’s a kind of joy that comes from an unexpected place. It’s a joy that says I would not change anything about what I have experienced or who I have become. It’s a joy that comes from finding beauty in a wounded place. I adopted a name for this kind of joy from a friend who calls it Radical Joy. When joy emerges and springs forth from a deep wound, a radical transformation has occurred. Radical Joy moments happen all the time. Some are instantaneous and some take years of struggle to break through.
I walk up to the podium in Chattanooga Tennessee to receive my award for being an inspiration to people living with ostomies and to tell my story. I am humbled to be given this gift for simply being a survivor and for learning to come back fully into life to give hope to others. So many things flash through my mind as my husband escorts me up the stairs to the platform. I walk proudly, cane in hand, for I have made a great comeback. I have found passion, compassion, healing and love. I was asked to tell my story because it is one of the most important things we can do in life. By telling our own story, we may touch a place of remembrance in someone else; a place that yearns to fully embrace their own life and knowing of self. As I begin to tell the story of my journey, I realize just how far I have come and how much I have healed. I start to tremble, feeling overwhelmed by the gathering emotions welling up inside of me. A flash of light from a camera takes me back and I remember that I have not walked this journey alone. I look at my husband’s big blue eyes, breathe, pause, and continue, just like I have learned to live my life. In the audience are other people who have journeyed along a similar path to my own. They, too, have survived life altering illnesses and are living with ostomies. They, too, have journeyed back to fully embrace life. I finally tell that six year old girl with the beautiful red shoes that she has found what she has been looking for – she has found people just like her. Clickity-clack clickity-clack tap tap tap. She beams her incredibly big beautiful smile and dances on her way.
© Copyright 2012 Joanna J. Burgess
Addition links of Joanna Burgess to view:
2011 Great Comebacks® South Region Award Recipient and you can find out more about Great Comebacks® and Joanna Burgess at http://www.greatcomebacks.com/us/stories/Joanna-Burgess.shtml
Sarcoma Alliance Cares for Children and Young Adults – News Release about Joanna Burgess: http://www.prweb.com/releases/2011/9/prweb8834724.htm
If you would like to contact Joanna Burgess please do so by sending her an e-mail to firstname.lastname@example.org and we will forward it to Joanna.