There are lots of reasons that I “should” be dead by now. I was born with Cystic Fibrosis, a genetic illness that affects the lungs and digestion. In 1973, the year I came into this body, the life expectancy for a person with CF was around eight. As medicine advanced, I seemed to stay right behind that number. When I was eight, the number was 12. When I was 12, the number was 21, and so on. I had countless bouts of pneumonia and bronchitis growing up. A few times I was so sick, my mother had a minister in to bless me in case I died. I managed to graduate high school, in between trips to the hospital, and go on to college. Unfortunately, my health ran out before I could graduate. I was so chronically ill that I was getting powerful intravenous antibiotics every few weeks, for weeks at a time. If you do the math, that means I was hardly ever not getting IV medication. After I left college, the doctors put me on the lung transplant list. My health was failing and that was my only hope.
I waited five years for my first transplant. I got sicker and sicker. I had to carry oxygen with me 24 hours a day. I couldn’t work and needed plenty of help to manage average tasks. I was dying.
On April 4 th, 2000 I got the call that they might have lungs for me. My family and I drove to the hospital, both excited and terrified. There was the excitement that I may live a life in which breathing came easily. There was the fear that the surgery would be too much for my body and I would never make it home again. In my heart, I believed that I would make it through the surgery and do well.
I spent a month in the hospital with various complications. My recovery was slow and difficult. Once I was able to run around, I didn’t want to stop. I encountered life with a ravenous appetite. My hunger was so disorienting, it was impossible for me to pick a direction or path. I went all over the map for months until, like hitting a brick wall, a medicine-induced depression hit me. I spent the next eight months in a deep hole, wondering what the point was to my survival. Eventually, I emerged but still had no better compass for what I should do with my life.
Ultimately, I chose to go back to school. I was enjoying it until, 2 years and 2 months after my transplant, I was given horrible news. I had Chronic Rejection, a puzzling and devastating illness with very few treatment possibilities. My lung function took a steady dive downwards and never really stopped dropping. I had to quit school again and reorganize my life for this new and uninvited guest. After a year, I was back on oxygen and very enfeebled. I was dying again but this time, there was no hope of a transplant. I asked the team if they would consider giving me another one but they declined, saying it was too risky and rarely successful. My options had run out and I had to say goodbye.
I rode the roller coaster of emotions, all of the ones outlined by Kubler-Ross, over and over again. Grief is not a linear process and I experienced denial, anger, sadness, bargaining and acceptance in many different shapes and forms. I did eventually land in the soft bed of acceptance. I had faced my mortality, grieved the losses and found beauty in my terminal illness. I was truly at peace.
That peace was unexpectedly interrupted by my earth angel, the new transplant coordinator. When she heard that I had expressed an interest in a second transplant, she went into action. Something in her was motivated to give me that chance. She wanted to put me on the list again.
My initial reaction was not one of joy. I don’t have a succinct word for how I felt. It was a jumble of anger, hope and dread with a large dose of confusion. I had made peace with my fate and now I had to consider the possibility of living? This seemed far more difficult than simply accepting death. I didn’t know what to hope for anymore! My lesson was a deep one about being okay with either outcome. If I lived or died, I would be equally pleased.
I did get another transplant. I marvel at the fact that I am still not dead! All of the procedures, medicines and surgeries my body has endured is mind-boggling. As a person who has lived with acute illness, chronic illness, sudden onset illness and terminal illness, I feel I have a unique resume relating to patient advocacy and illness psychology. I was inspired to write this book after a conversation with a friend of my husband’s who came to visit one summer. Her father had just had a stroke and was in the hospital. She told stories of great fear and sadness because she was so lost in the medical maze while desperately trying to take good care of her dad. I was overwhelmed with the desire to give her all the tips and tricks I had stumbled upon during my personal journey. For patients and families, the world of medicine can be disorienting and difficult. It’s my hope that the practical parts of my book will help those in the system navigate more effectively and with more confidence. I have “been there, done that” and I hope that my lifetime of experience can serve to help others bypass painful obstacles that I had to learn about the hard way.
This is not a book about transplant or Cystic Fibrosis. In giving talks and creating this book, I have had the opportunity to interact with many patients with a wide variety of diagnoses. While we may have been on different medications, had different surgeries or experienced different symptoms, the emotional, spiritual and psychological effects were often nearly identical.
Most of us will become ill at some point in our lifetime. Many of us will find ourselves in the medical system, either as a patient or caregiver. One of the most helpful things for someone to know in those situations is that they are not alone.
As one aspect of this book, I have taken my personal journals off of the shelf, dusted them off and transcribed them. Despite how vulnerable this makes me, I feel it is important to open the door into the private thoughts and emotions of a person facing illness. I offer my journals as an affirmation; there will be times of sorrow and times of joy in everyone’s path and both of those are okay, even “normal”. I imagine many who read my emotional confessions will see themselves in the writing. We are all human and we should not have to feel our way through illness alone.
Another aspect of this book is my ponderings related to the spiritual side of illness. I speak of God and other “religious” references. I struggled with my decision to include these parts of my life as, these days, it is so easy to turn people away with a religious reference that is not in sync with their own. In the end, I could not leave out my relationship with The Divine as it was a huge part of my experience. I have found great inspiration and clarity from many different religions and ultimately found that one’s intention is what is most important. It is my hope that my choice of language about spiritual topics will not be a distraction from the intention and lesson behind it.
I offer this book to patients, families and medical professionals. It is part hand-book, part memoir and part confessional. I hope I have succeeded in providing a window into the quiet and often overlooked world of a person facing serious illness. I hope others will benefit from my mistakes. I would be thrilled to have others be inspired by my victories.
I have much to share and still much to learn. By the grace of God and many beloved people, I am Still Not Dead.