Читать книгу This Is Not the Life I Ordered - Deborah Collins Stephens - Страница 27

“Obstacles and possibilities often meld together to form defining moments in life, sometimes appearing just when we think we have life figured out. Unfortunately, smartly compartmentalized lives can be turned upside down in a matter of moments. One such moment involved my husband, Mike. After playing a round of golf, he experienced waves of pain that made him 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.”