When Good Fortune Hampers Resilience

Ellen # 1

The stories on this blog are meant to help us think about ourselves in moments when we feel lost. The women I am writing about are open about their dilemmas, and they encourage us to be the same. In keeping with their advice and in response to a number of people who have written to ask me about my story I will digress here and tell you more about me.

I grew up in a bubble. Economic hardships for my family were well in the past, and although I knew about the early death of my great-grandfather and the financial strain that caused his family and my grandparents on my mother’s side of the family, these stories had receded into history. From the vantage point of our fourth-floor apartment in Jersey City where I lived with my mother, father, and older sister, I was unaware of any dangers in the outside world.

We were a middle-class secular Jewish family with all the necessities of life and a few of the luxuries. I had no fear. I roamed from apartment to apartment, biked the city streets, and played on building rooftops with other neighborhood children without fear. For me, Jersey City was a place in which I had everything I wanted, and I was free to do whatever I imagined possible.

In spite of what I believed during the day, I had night terrors as a child. I dreamed that my father died and that we had nowhere to go. I woke up screaming, and one of my parents came into my room and sleep with me for comfort. They assumed that it was their responsibility to soothe me. No one spoke to me about my fears, where they came from, or how I might face them.

Since life’s disasters had been kept hidden, after I married and had two children, I believed that I could make choices that would keep me and my family safe. I studied a psychology that taught me to believe in personal responsibility and free will. I had faith in human beings’ capacity to take care of one another and make changes when they had to. I took this belief forward into my life and into my work.

My life of good fortune ended when my husband Ron was diagnosed with Amyotrophic Lateral Sclerosis, (ALS, or Lou Gehrig’s disease), a progressive neurological disease with no known cause or treatment that paralyzes the muscles in the body and leads to death. Ron lived at home on a ventilator for seven years until he decided to turn the ventilator off and to die.
Ron was diagnosed with ALS in 1985 when he was forty-two years old. We had been married for twenty years, our daughters were twelve and sixteen, and, we had known a great deal of happiness. We both loved our work, I as a family therapist and Ron as an electrical engineer. We were blessed with close friends and family and spent much of our free time hiking in the mountains with our daughters.

Within a year of his diagnosis, Ron went into the emergency room of our local hospital in crisis, unable to breathe on his own. That night, he was put on a ventilator that kept him alive for seven years until he chose to have it turned off. He came home from the hospital to round-the-clock nurses, a stranger to me, to our daughters, and to himself.

For those years, I took charge, made do, ran the show, but I couldn’t keep up with Ron’s illness. As time went on, I saw the world filled with tragic forces beyond my understanding and my ability to adapt. I was humbled by how little I knew about myself and the universe. My belief in my capacity to manage and to choose well in any circumstance disappeared. I got through this period by what I now call my “white-knuckle approach.” I hold on, and then hold on some more, until either I die, or my life would go back to what it had been before; but of course it never did.

Although I continued to put one foot in front of the other and attend to the details of our life, I stumbled into despair. I railed against the fate that brought this terrible illness to us, and I didn’t know where to learn how to live under these new circumstances. I was filled with questions about how to keep going.

Years after Ron’s death when I had remarried and my life was once again stable, I still lacked confidence in my ability to face hardship. I remarried, but I tended to watch over my second husband as he slept, making sure that he was breathing, and to over-react when my adult children were out of contact for what seemed to me to be too long. I still lacked a story of resilience, and I was still bound by fear.

It wasn’t until I worked in Kosova, following the war there, that I became hopeful about our capacity to live through hard times. I was in Kosova as part of a U.S. team working with Kosovar mental health professionals developing their mental health system. Our team met many who had faced the horrors of the war, but one woman, Zepa Read Zepa's story on the blog -- October 12, 2006) stood out from all the rest. It was she who led me to want to know more about what it takes to stand up against fate.

I left Kosova impressed with Zepa’s resourcefulness. I had no opportunity to sit with her and find out more about what made it possible for her to move from grief to action on behalf of herself and her family in only three years. Language, distance, and time stood in our way. When I returned to the U.S, I wanted to learn how women like Zepa survived and thrived. I began my search by asking questions of a few women I already knew and admired who had endured suffering. I was curious about how they described their life situations, the resources that came to them from their family circumstances, and how they understood the dilemmas that they faced. Other women who had faced tragedy, whom I hadn’t known before, began to show up in my life. Perhaps it was coincidence, or perhaps I was just noticing because of my experience with Zepa.

I listened closely and recorded the women’s stories, hoping not to freeze in fear the next time I was dealt an overwhelming blow by fate. But I discovered that in order to learn from other’s stories, I had to re-examine my basic assumptions about life -- to challenge what I had always believed to be true. Only then would I able to see how their stories provided a guide for my new stories. My hope is these stories and the other stories that you post will be a guide for readers of this blog.