Change of Heart

Light Through the Crack: Life After Loss
by Sue Mosteller, CSJ.

Leonard Cohen once wrote in a song: "There is a crack in everything/That's how the light gets in." Combining revealing memoir and the inspirational stories of others, Sue Mosteller, the executrix of Henry Nouwen's literary estate and an active, well-known participant in L'Arche Community, brings to life the meaning of that resonant phrase and illuminates why human weaknesses, the vcracks" in our personalities, are actually the greatest sources of light for the world.

Chapter 1

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.

Copyright © 2006 by Sue Mosteller.

About the Author

Sue Mosteller, CSJ, the executrix of Henri Nouwen's literary estate, serves on the board of the Henri Nouwen Society and is an active, well-known participant in L'Arche Community, an international network of faith-based communities for people with developmental difficulties. She lectures around the world, and lives at L'Arche Daybreak Community in Toronto, Canada.