unable to walk as muscles spasmed throughout his body. After six months and numerous trips to the University of California-San Francisco Medical Center, doctors began to unravel the illness that was ravaging his body, which, by that time, had destroyed over half his lung capacity. His diagnosis began with the term “pulmonary fibrosis, caused by dermatomyositis and polymyositis”—words I could neither pronounce nor understand. We were told that he had five to six years to live. Our children were ages six and ten. The doctors suggested a lung transplant.
“Writing on Memorial Day, a time when we honor those who have served and died in wars, I realize that my husband was a veteran of a very different kind of war—a war on a rare disease. It is twelve years since his diagnosis and three and a half years since his death. Mike outlived his doctors' prognosis by so many years that he was among the longest living patients ever treated for pulmonary fibrosis. When he died, Jackie remembered this warrior by having the American flag flown at half staff on the nation's capital in his honor.
“Mike and I and our children spent over half our lives fighting this terrible disease while trying to live a normal life. There were times of fear and sadness and many times of happiness. There were battles with insurance companies over experimental drugs, prior authorizations, and responsible parties. There were hospitalizations and ambulance rides in the middle of the night. There was a move from our home in San Francisco to a small Midwestern town—a move that brought us closer to Mike's family and acknowledged the reality that the lung transplant list in that region was shorter.
Many women have stories like mine. The difference? I am blessed with friends like Jackie, Jan, and Michealene, and I am supported by the wisdom of other women that helped prepare me for a future I didn't want.
“Moving to a small community in the Midwest at the age of fifty meant leaving behind my home, friends I loved, and a support system that I had always relied upon. I carried a piece of paper in my purse for courage that read: What would the blue-haired lady do? While I didn't know a single woman in my new state, however, I knew the importance of women's friendships in my life. So I tried to figure out how to meet as many women as I could in the shortest period of time. My solution was to create a women's conference similar to the one Jackie had started in California. Today, that conference is in its eighth year and has grown to be the largest event of its kind for women in the Midwest.
“Billie Dragoo, now my closest friend in my new home, joined me in getting the conference off the ground. After meeting her for coffee one morning, I knew she was the kind of person every woman should have in her corner. She opened up doors for me, introduced me to others, and was encouraging and kind.
“I tackled my husband's illness, our move, and our family's transition as my most important project. I followed the steps and the advice given in this book almost as a textbook case. Yet as Mike's disease progressed, I never once thought about what my life would be like after his death. Planning for a future without him never registered in my thoughts.”
Light Travels Through Broken Places
“A strong voice inside spoke to me on many sleepless nights. It said that my obligation was to help my husband die with dignity. Gail Sheehy, author of the iconic book Passages, had traveled a similar journey with her husband and she introduced me to hospice and palliative care when she spoke at my conference. I'll always be grateful for her caring advice. I set up a meeting with Mike's doctor and broached the subject of hospice. He agreed and gently told Mike that he needed to get his affairs in order.
“Mike, still determined to fight his illness, struggled to accept his reality. ‘After you have fought so hard for so many years and battled the odds, it is difficult to turn off the fight,’ he said. As primary caregiver, I spent most of my time at home, which now resembled a hospital. I was extremely grateful that I was able to care for Mike, but I quickly learned how lonely and scary caregiving can be.
“I was still working—I had to work, as we had enormous medical bills. We were extremely lucky to have escaped bankruptcy. In fact, over 60 percent of families dealing with a terminal illness go broke and far too many women lose their homes and any sense of security when a spouse dies. The whole process is akin to landing a 747 in the midst of a war zone.
“I quickly learned how to compartmentalize, going to the upstairs bedroom to conduct conference calls for my work while knowing that one floor below, my husband lay in a bed dying. Trying to be ‘normal’ while living in the most abnormal and heart-breaking of circumstances was excruciating. Michealene described perfectly how I felt—like an old thermos bottle encasing shattered glass. The thermos looked perfectly normal on the outside, but when it moved, you could hear the tinkle of the shattered pieces. That was me.
“My friend, Billie, introduced me to Dr. B., a psychiatrist who met with me weekly to help us through Mike's nine-month hospice journey. More coach than psychiatrist, Dr. B. overflowed with life wisdom. He gave me assignments each week, all crafted to help us through difficult moments. One in particular made an amazing difference. He asked me what I thought of when I heard circus music. I responded: Happy, cheerful, smiling kids, lighthearted. He instructed me to download as much circus music onto my computer as possible and to start playing it at home. What sounded crazy at the time turned out to be nothing short of remarkable. The music took our minds to a joyful place that made the moments easier to handle. My husband got the biggest smile on his face whenever he heard it. Today, that is the face I remember—that big smile. If you're lucky, you get to engage with a remarkable human being like Dr. B. His lessons will accompany me forever.”
This Isn't My First Rodeo
“Sheryl, the hospice nurse who cared for Mike, had spent twenty-five years tending to the dying. I'm convinced that the blue-haired lady sent her to us. Sheryl's favorite saying was: ‘Deborah, this isn't my first rodeo and I hope you'll learn to trust me. I'm going to be with you every step of the way.’ Sheryl counseled me to live through this time with no regrets, and taught me that living with no regrets meant savoring the day, the hour, the moment. It meant letting no words pass through my lips that I would regret after Mike's death. When you live with someone who is dying, even the most mundane of days become important. You wonder: Is this the last minute? The last hour? The last day? The times are so stressful and heart-breaking and funny and memorable and devastating.
“Sheryl believed that people die in much the same way they have lived. Her words were true for Mike, as he refused to see death as a possibility. This admirable quality served him well in the fight against his disease. Yet now, facing death, that trait caused chaos, along with physical and emotional pain that seeped into all our lives. We undertook the task of encouraging Mike to surrender to his illness. Our children, Aaron and Lily, took on roles no children should ever have to fill. They sat with their dad, the hospice team, and the priest, and asked him to quit fighting. They gave him permission to die. Several weeks later, Mike's last words to me were: ‘You are so beautiful. I love you. Let's go home.’”
Endings
Three months after the death of her husband, Deborah's mother was hospitalized, diagnosed with congestive heart failure, and placed in a nursing home. Several weeks later, her sister-in-law was diagnosed with leukemia and undertook a stem-cell transplant and more rounds of chemotherapy than she believed any person could survive. “My husband had died; my sister-in-law had died; and my mother was close to dying. My mind and body—but above all, my soul—were depleted.
“I recall Jackie and Jan describing grief as being on the beach while waves come crashing down upon you with little warning. Death changes everything. Well-meaning friends, even your own family members, want you to be ‘okay’ as fast as is humanly possible. Each time they look into your eyes, you bring home to them the reality of endings and it's often uncomfortable. Endings impact our children no matter how hard we try to protect them. I am blessed. My children are remarkably kind, healthy, and well-adjusted adults. Due to their life experiences, they carry a wisdom and resilience that most their