Change of Heart, Part 2

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

(Page 2 of 2)

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.

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.