When first diagnosed with idiopathic pulmonary fibrosis, health resilience never occurred to me. I felt shock; I had been told by my pulmonologist who had just completed examining me that my life span might include an additional three to five years. The grieving process began as I listened to his presumptive comment about my shortened life expectancy. I walked toward the office exit door with tears streaming down both cheeks.
The disease followed a predictable progression during the next four years. By mid-April 2010, simply breathing made life increasingly challenging. During an appointment with a new pulmonologist, he asked if I would be willing to explore the possibility of receiving a lung transplant. It was my single life-saving option.
By the end of that summer, with a myriad of pre-transplant testing requirements completed, my name was added to the UNOS (United Network of Organ Sharing) transplant waiting list at the Cleveland Clinic. Much to my surprise, in less than two months, I received a phone call confirming a perfect match lung was immediately available. Feeling excited and terrified and with enthusiastic family and friends cheering me on that night, we raced to Cleveland for the surgery.
Once I received my new lung, the immediate goal was to keep from rejecting the foreign lung as it began to integrate itself with my body. Feeling stunned, both native and foreign lungs naturally began to function in unison. Days before Christmas, I experienced symptoms of minor rejection. Fearing others might overreact, the decision was made to tell no one. So wise!
As months passed into years, I became increasingly resilient and self-protective. Despite having been warned not to garden, within several years I developed Nocardia pneumonia. Bacteria found in garden soil was the precursor of this often-terminal diagnosis for transplant patients. While hospitalized at my transplant center, I recommitted to following the rules, promising myself to never put my hands in garden and plant soil as I remembered to remain treatment compliant.
Shortly after celebrating my five-year transplant anniversary, I was diagnosed with a new life-threatening illness, stage III-C uterine cancer. The single sign that alerted me all was not well – several droplets of vaginal blood occurred on three separate occasions. Nine months of oncology treatment began with a hysterectomy and continued with chemotherapy, radiation, and ended with two additional chemotherapy visits.
Following a PET (Positron Emission Tomography) scan the morning before Thanksgiving, my nurse confirmed, “You are a survivor.” My trusted intuition hadn’t offered any thoughts about what the test results would reveal. With surprise, I whispered under my breath to myself; “Thanks be to God.” As the published author of two health memoirs and additional resilience-focused essays, I became increasingly aware of the blessings of God’s presence and grace in my life.
Suddenly, over night, I stumbled. Something over which I had no control, entered my life. As a result of intermittently coughing up what appeared to be mildly clotted fresh blood, I was again hospitalized. Comprehensive testing revealed no apparent cause for the sudden appearance and then equally rapid disappearance of fresh blood. Following hospital discharge, I arrived home with a diagnosis of bronchitis. However, I was still coughing up fresh blood.
During the five-day hospitalization, I spoke with a physician who helped me begin to understand the powerful slip that slid like a snake into my intentionally calm and highly protective life. An ancient adage, known to many; “When the student is ready, the teacher appears,” kept popping into my mind. Was I ready for a more grown-up dose of humility?
Could I trust my life was unfolding as God, Mary, and the Holy Spirit intended? Would I be willing to let go of my plans for the rest of my life and simply invite the Holy Trinity into my 77-year-old life? Perhaps the most difficult question to answer; “Did I honestly want to feel this vulnerable?”
My decision was immediate … an overwhelming yes! Nothing to lose, I thought. Sadly, I had become complacent about my life. The gift of life so generously offered, despite my efforts, a still unidentified person and his or her family had been at times taken for granted. This gift could have been offered to and accepted by any one of many wait-listed equally or more qualified lung transplant candidates, but I was the recipient. I had lost touch with my initial gratitude and was struggling with a family issue that was over-riding my strong sense of gratitude, hope, and peace. Decades ago, I recalled mentioning to a friend I wanted to be remembered as a woman of grace. I thought to myself, a woman of grace would always remember gratitude.
Health resilience renewal
My life felt stuck, and in an odd way out of balance before my son called, reporting that his former wife, my grandchildren’s mother, had died overnight. Granddaughter Katie heard her mother fall and subsequently call out in the middle of the night. She quickly went to her mother and called for her brother Alex, who successfully performed CPR on his mother while she (Katie) anxiously called 911. Steph was beginning to breathe again when the emergency van arrived. Sorrowfully, she succumbed, never to be brought back to life, during the race to the nearby hospital’s Emergency Department.
The children’s father, my son, Andy, lived only a few blocks away from Alex, Katie, and their mother. Like lightning, this tiny newly created family, with the help of friends and extended family, assisted with arranging Steph’s calling hours and religious service. With conviction, Katie tearfully shared she wanted to be strong for everyone while Alex remained his calm, seemingly unflappable and focused self. Andy, who works as a global company project manager, used his transferable organizational skills as he began to reconstruct his life as custodial single parent father to an 18-year-old son and 15-year-old daughter.
Despite major changes, without question, the most difficult challenge this grieving family faced was acceptance of Steph’s passing. Those familiar with the stages of grief grasp the unpredictable mood shifts which often occur during the feeling of early grief. One minute the predominant feeling is anger. Suddenly, for no apparent reason, a feeling slide occurs, and denial becomes the lead emotion. The loss of control of mood shifts can be frustrating, unpredictable, and even a bit scary at times.
When someone as important to an adolescent as a parent dies without warning, how do they regain trust in life? Is it possible to somehow see this progression in predictable stages? Are these stages reflective of Dr. Elisabeth Kubler-Ross’s five stages of grief?
How long before the child or adolescent is able to again feel and express humor? Alex said; “There are no words,” as he described his mother’s shocking death several hours after it happened. When do words begin to reappear to express personal thoughts and feelings? When will they be comfortable and relaxed enough to once again calmly see the humor in life? How long will this take? Practical answers were and are needed. I spoke with my Spiritual Director Susan shortly after Steph passed and I will speak with her again. I also called my priest, asking him to provide insight into how divorced families process grief when the custodial parent mother without warning dies.
I would like to invite you to explore nine potential steps of health resilience renewal. When one suffers from a chronic illness and the illness is compounded by life’s interruptions, it is often wise to consider following a series of daily easy-to-manage steps to keep and maintain the focus on health resilience.
1. Begin each day by praying for those who are especially vulnerable. Perhaps you will pray for yourself.
2. Fulfill daily dietary responsibilities.
3. Complete daily and weekly physical exercise commitments.
4. If feeling lost or confused, be willing to stop what you are doing. Ask God, Spirit, a higher power or power external to you to show you the way.
5. Remain open to receiving guidance about how to create your most supportive living environment.
6. If negativity is present in your life, don’t delay in asking for help to remove people, places, and things that no longer fit your life.
7. Allow no space for others’ unsupportive thoughts, feelings, and behaviors.
8. Open your heart to humbly welcome joy and peace into your precious life.
9. Vow to express gratitude to all whom you wish to thank.
Within several weeks of Steph’s passing, this plan evolved. I felt the tug of wanting to lovingly respond to my grandchildren and their father as well as to pay consistent attention to my lung transplant and to attend to all health-related concerns. As I continue to review this final paragraph, I am reminded some steps naturally feel easier than others as we are all a work in progress. In closing, Thanks be to God, Mary, and the holy spirit for the gift of life.
Diane Tefft Young, a member of St. Mark’s, Columbus, is the author of Humbled by the Gift of Life and Cancer Hope: Discovering Survivor Skills and a contributor to Coping with Cancer Magazine. Both Humbled and Cancer Hope are available at Amazon.com.