CHANGE OF HEART
Hurt by my friend Bruno, I was pained and furious. From my grief, I thought, "How did we get to this place in our relationship? After all we've shared, can't you see how badly you are hurting me? I can't take it! You're so insensitive. I wonder if I can ever trust you again. I'm dying."
Living in the same community with Bruno made it impossible to withdraw physically, so I pulled back emotionally, closing myself off not only from him but also from his friends and others around me. Blame dominated my inner stream of consciousness. "You've hijacked our mutual project, cutting me out of it. You're plotting to hold on to control. You're turning others against me, and I know you hate me but I don't know why."
I felt the problem physically. High stress precipitated the need for almost constant deep breathing. It was hard to focus, and work became a real task. I watched mindless TV, and I overate so that my full body lost its dynamism. As time went on and the rift between Bruno and me widened, I noticed the negative feelings seeping into other relationships. I had a short fuse at the dinner table, in bank lines, with other drivers, and with innocent children playing in front of my home. I experienced what some might call low-grade depression.
While all this was unfolding, another of my friends, Claire, faced a critical choice. She had to decide to accept a heart transplant and live, or to refuse it and surely die. Knowing that either decision demanded a terrible letting go of her life as she had always known it, I witnessed how she unhesitatingly refused the transplant, satisfied that her life had been full and good. Later, realizing her deep love for so many people who wanted her to live, she calmly reversed her decision. Her remarkable freedom around her very life astounded me!
From Claire's encounter with modern medicine, I began to gather diamonds of wisdom for my own life and relationships, particularly my excruciating experience with Bruno. Claire's physical journey through her transplant pointed a direction for me through my own emotional "heart losses" into another kind of heart transplant. Claire, threatened with imminent death, mirrored for me the demise of my inner heart and passion to love and be loved. Emotionally and psychologically, I was dying too, and I had choices to make. If I refused to accept my need for a "change of heart," I was heading for disaster in all my relationships, but if I chose to discard my heart of stone for a real, human heart of flesh, there was hope for my inner revitalization.
I intentionally chose Claire's heart transplant journey as the lead story for this book because all the stories deal with heartbreak and inner transformation. Claire is a powerful witness because in the time of her greatest weakness, she musters the love and the courage to refuse death and passionately choose a new, wonderful, painful, and limited life. Her very physical heart journey parallels my heartbreak and inspires me, despite my attraction to refuse, to discard my heart of stone and welcome a new, though still limited, heart of flesh and love.
CLAIRE TELLS HER STORY
When I was small my father, a nuclear physicist, and my mother, a chemist, both worked at the U.S. Atomic Energy Commission. My father taught me to read the binary tapes from the computers and to answer many scientific questions, and this precocious learning served me well later on. My parents had high expectations of their children but not too much awareness of weakness.
We moved to California, and when I was fourteen it happened. I was on the local swim team, and we were doing a typical vigorous workout of laps. Suddenly I had to stop and cling to the side of the pool. I was gasping for breath, feeling terribly fatigued. My coach kept yelling, "Swim, swim," but I was unable to move! When he realized that something was wrong, he pulled me from the pool and summoned my mother. We soon found ourselves in the office of a cardiologist, and my immediate future seemed very bleak indeed. I was diagnosed with a serious heart defect, and I was devastated.
My summer proved to be a time of restlessness, anger, and despair. I had long been preparing Hildegard, my Nubian kid, to enter the 4-H fair, and now I could only listen to all my family in the yard getting ready for the fair as I rested on my bed. Friends came and went, outings and shopping trips all happened without me, and I felt abandoned and forgotten. This was an experience that would be repeated many times in my life, and it always wounded me deeply.
When our mother began to share the evening meal with me, my sisters felt her absence from the family table and accused me of being the "favored child," not realizing that I was spending almost sixteen waking hours a day alone. Gradually I realized that I was a source of worry for my parents and made my sisters feel robbed of the parental affection they needed. I began to wonder if my illness was a punishment of some sort because I wasn't a perfect child. Perhaps God had given me this damaged heart because I had messed up my life, not always living by the "rules." I had caused it all, and I lived with the resulting guilt, self-doubt, and anger.
Physically unable to attend school, I began to be homeschooled, but that did not protect me from cruel external voices. One day when I was seventeen my twelve-year-old sister, Christine, was pushing me in my wheelchair at the grocery store. The checkout lady asked Christine, "Does she talk?"
Fortunately, Christine replied, "Why don't you ask her?"
Then the checkout lady went on, "It must be so hard having a sister like that! You are so wonderful to take care of her. What a generous girl you are!" Of course this was true for Christine, but being perceived as such an incompetent burden was deeply painful for me.
It was during my teenage years that I faced my mortality squarely. Instead of discovering all my body's capabilities, I was realizing that my body was terribly fragile and that I may not have more than another year or two of life. I dealt with some of the stages of grief: anger, denial, and bargaining. Removed as I was from my peers I could only wonder what it would be like to move in a group of high school or college friends and share dreams of a full and fruitful life. I gradually let go of future hopes and came to an acceptance of myself with my disfigured heart as being here only in the short term.
Mum wanted me to stay home for university, but my father intervened and flew with me to a small college in Northern California. My academic credentials were excellent, but the college questioned my medical report. It was then I realized that being handicapped isn't just a condition but also a set of behaviors. In public I knew I must maintain a carefree and robust demeanor.
I did well the first year but had my first heart surgery when I was a sophomore. My doctors gave us fifty-fifty odds for my survival. I did survive and joined a clinical group to test a new drug. Unfortunately, it didn't stabilize me adequately, and from time to time I was found unconscious somewhere on the campus. Because psychedelic drugs were rampant at colleges in those years, some people thought that I was stoned! When I returned home from college for the summer my cardiologist set a date for my second surgery two years to the day after the first one. A pacemaker was implanted in my abdomen, and from then on I knew my heart would keep beating no matter what! Despite having to recover for two semesters out of eight, I was able to graduate with honors with my class and with a scholarship to help me attend graduate school.
I continued to do well in graduate school in Chicago, but I had to be admitted to the coronary care unit (CCU) of the local hospital every second or third month with heart failure. When I heard about local religious retreat houses from a friend, I looked at my pattern of heart failure and began to sign myself up for a "week away" every three months or so. These retreats did much more for my physical, emotional, and spiritual wellness than my regular stints in the CCU.
Having encountered the innumerable barriers for handicapped people in education, employment, transportation, access to buildings, communication, and decision making, I left the university and began to follow my passion for the civil rights of persons with disabilities. I campaigned in my congressional district and was elected a member of the California delegation to the Democratic National Convention. I lobbied for a plank in the Democratic Party platform that championed these civil rights. It was an exhilarating year of writing and rewriting until we finally clinched the paragraph. Just before I was hospitalized for three days after having collapsed on the street, my platform was carried, and later, the Republican Party picked it up as well.
Shortly thereafter I discovered "home" with people with disabilities (core members) and their assistants in a small L'Arche community on the West Coast of Canada. For the next twenty years I lived and exercised leadership in four quite large and very different L'Arche communities across Canada, finally settling in the community near Toronto. Because I had studied Japanese in college, I went to Japan for two years to support a new L'Arche community beginning there. I experienced shortness of breath, occasional heart failure, and a steady decline in my short supply of energy. But I had many aspirations, so whenever I felt weaker I tried harder and that always kept me going. I also continued my practice of going every third month to a retreat house for absolute solitude and rest.
My strategy of dealing with my health condition as privately as possible worked until I was in my early forties and suffering from recurring bronchitis. I asked my doctor whether any intervention, medical or surgical, other than a heart transplant would help me, and the answer was no. After examining me, my doctor said, "You are in extreme distress from a cardiac point of view! There is no cure, and there is no hope that your condition will improve." My doctor then referred me to the transplant cardiologist for assessment. It wasn't certain that I would become a candidate, but I first needed to decide if I wished to begin a process that could lead to receiving a heart transplant.
I had a vivid memory of following every detail of Dr. Christiaan Barnard performing the very first heart transplant in South Africa in 1967. Just before my first heart surgery I had identified closely with his patient, Louis Washkansky, and I hung on every detail of his progress. I could almost feel the surgery in my own flesh, and I experienced shivers throughout the eighteen days that Mr. Washkansky lived after his surgery. That was enough. I knew then that I would never
have a heart transplant.
Now, living a life of faith and having had lots of opportunities to befriend my death, I didn't dwell much on my decision. I had lived with death at work in me and always close before me, like a sister, or a spouse. I wasn't frightened to die. On my way home from the doctor's, I felt ready to live until I died without a transplant.
But one of my friends reacted strongly when I said I was quite prepared to die. Stating that heart transplants were now normal procedures, she questioned my choice to die when I could choose to live. Her comments gave me pause to consider how much I loved the people in my family and in my community, and how much they loved me and wanted me to live. So I reversed my direction. I very quickly learned that this was only my first "yes" for a new life.
Transplant teams do not give new hearts to just anyone who asks. I also had to say yes to extensive physical and psychological testing. How capable was I of taking responsibility for this expensive and drastic solution? Could I work with doctors and accept help from others? Was I able to welcome the new freedom as well as the constraints a transplant would offer? How would my body cope with giving up a primary organ for a foreign replacement?
I said another "yes" to looking serious! I left behind my casual comfort zone and bought new, more professional clothes. I dressed up for doctors' appointments and applied makeup, and I spoke through my reticence with more conviction and determination. When the cardiologist examined me, I said with as much energy as I could muster, "I need to get going. I have plans for my life," to which he solemnly replied, "You are in very grave cardiac distress!" Acting strong and feeling fragile, I passed the rigorous testing and was placed on the waiting list to receive a new heart.
I was presented with a beeper so I could be informed the moment a heart became available. I couldn't leave the city, and when the call came I would have one hour to get to the hospital. Meanwhile, I had an opportunity to attend classes with others like myself. People who had survived a transplant clearly outlined their experiences, including fear, pain, doubt, trauma, mixed emotions, relational shifts, ups and downs, joys, hopes, and recovery. I learned the parameters within which someone with a transplant could reasonably function and survive.
I began my waiting period in the home I had shared for many years with friends in my community: Rosie, Roy, Michael, Bill, and John, who had intellectual disabilities, and their assistants. My beloved and faithful dog, Sacha, and my beeper were by my side. My primary task was to work with the hospital personnel to clear up the bronchitis, a prerequisite for my transplant.
I was soon surprised to learn that some of the community members responsible for my home had decided it was too risky to have me there and asked that I move. The community leadership rented a one-bedroom apartment on the eighth floor of an apartment complex where other community members lived. Reluctantly, I said a further "yes," to losing my home! Some of those in the other apartments supported me daily, but others, perhaps fearing the burden of my care, were more reticent and guarded about spending time with me. Other community members came for visits and brought flowers. However, I was often too weak to care for myself, to cook, shop, or bathe, without fear of collapsing. I had feelings of deep abandonment. A few people from my choir made certain that I got to practice and to my church, where I had contact with other friends.
Not long after my move I was permanently replaced as manager of one of the work programs in the community. Another yes--to giving up my job--was not easy for me.
Less and less able to cope and no longer able to drive, I asked my father to take my car and my dog back to California after his visit to Toronto. I grieved alone for my frisky companion, and my means of independent travel.
Painful as it was, I was now on course, and I never wavered in my choice to live. I signed on for correspondence courses that offered new career opportunities. Using my head to prepare for the future energized me some. And at my choirmaster's suggestion I auditioned for the renowned Amadeus Choir of Toronto and was accepted. Just being able to sing with others allowed me to muster the energy for rehearsals, where I also found new, life-giving friendships.
Excerpted from Light Through the Crack by Sue Mosteller C.S.J.. Copyright © 2006 by Sue Mosteller. Excerpted by permission of Image, a division of Random House LLC. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.