This Is Not the Life I Ordered. Deborah Collins Stephens
Чтение книги онлайн.
Читать онлайн книгу This Is Not the Life I Ordered - Deborah Collins Stephens страница 11
![This Is Not the Life I Ordered - Deborah Collins Stephens This Is Not the Life I Ordered - Deborah Collins Stephens](/cover_pre682146.jpg)
“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 ages do not. Aaron is a global product manager for a medical-device company. Lily is an account executive for a medical-device company and Mairi is a nurse. My children, my co-authors, a few close friends, and an extraordinary hospice team have helped me in countless ways.
“It is true what Ram Dass states: ‘We are all just walking each other home.’”
6
WHEN YOU ARE STANDING AT THE EDGE OF THE POOL, JUMP IN.
I read and walked for miles at night along the beach, writing bad verse and searching endlessly for someone wonderful who would step out of the darkness and change my life. It never crossed my mind that person could be me.
ANNA QUINDLEN, WRITER (1952–)
Hide-and-Seek
“As a child, and into adulthood, I learned to hide my light from others so that no one would hurt me. Perhaps it came from being sexually abused and learning that people can take very special parts of you without your permission. As a result, I developed a fear that someone would take that very special part of me and destroy it. I am Michealene Christini Risley and I became an expert at hide-and-seek.