Being Sick Well ___

Introduction The Trend and How to Cope My wife, Pat, had two heart attacks and two strokes. She had diabetes, her kidneys failed, and she went on dialysis. She had bypass surgery on her legs, but eventually both were amputated above the knees. Over several decades she went blind and her hands became numb. At age fifty she died. What kept Pat upbeat despite all this? Three things. First, she was a devoted mother. She was willing to go through anything, provided that our daughter, Felicity, was okay. Second, Pat and I became increasingly spiritual. Medical research shows that spirituality is a powerful resource for dealing with stress. We were devoted servants of Jesus Christ. We prayed often for healing, but God’s answer was, “Not yet!” Third, Pat’s medical disasters were not her main experience in life. The diseases were often quiet and well behaved. There were long periods of normal life. Even when Pat was on peritoneal dialysis, it became part of the ordinary routine. Life itself was delicious. It was sometimes possible to deny the danger, ignore the illnesses, and simply enjoy the blessings that God sent us in such abundance.1 I cannot say that Pat and I were always successful in dealing with her illness. In the end I was humbled, feeling I had not been as good a caregiver as I should have been. Page 7 Page 8 There is an epidemic of chronic illness today. Catherine Hoffman found that 90 million Americans had a chronic illness in 1987.2 By 1998 that number grew to 120 million, according to Gerard Anderson’s research team at Johns Hopkins.3 At least 45 percent of all Americans have a chronic condition, accounting for 78 percent of the healthcare budget.4 These numbers are increasing. By 2030 the number of Americans with a chronic disease will be 171 million.5 These are huge numbers. This is the largest epidemic that has ever swept our civilization, bigger than the epidemic of heart disease, cancer, AIDS, and Alzheimer’s disease combined, because it encompasses and includes those other epidemics. This epidemic has swept the globe. Every technologically advanced society has the same escalating problem that causes skyrocketing medical costs. I set about to learn how people had successfully endured the affliction of chronic illness. I asked doctors, nurses, clergy, and other friends to refer to me the name of anyone they knew who had lived with a dreadful illness for a prolonged period of time yet remained upbeat. Then I interviewed those people, learning how they managed to live with a positive attitude. This book contains the wisdom distilled from those interviews. Twice as many women as men were referred to me. I interviewed Protestants, Catholics, Jews, Muslims, Buddhists, Hindus, agnostics, atheists, and those with nonspecific spirituality. They had a range of chronic illnesses or were caring for someone with a chronic illness and came from a wide geographic distribution, from Maine to California to Florida. While many were disabled by their illnesses, others worked full time as a housewife, banker, barber, teacher, software engineer, doctor, chiropractor, lawyer, or minister. Here is what I found from these interviews: A woman whose child is born with multiple defects is overwhelmed with sorrow. Then her family and friends gather around her, and she feels so supported that the birth defects are seen as a blessing in disguise. Someone with severe lupus and brain tumors uses humor to mock the diseases, allowing her co- workers to laugh with delight, thus preserving dignity and nobility in the face of suffering. Someone with terrible arthritis puts a brown paper bag in the middle of the dining room table at a party. She says that anyone who even mentions her pain that night must put five dollars in the bag. The party is a success because no one Page 9 discusses her illness. Many people feel closer to God as they endure unavoidable suffering, and that relationship sustains them. These are some of the ways that people live well despite being sick. Like the Centers for Disease Control (CDC), I define chronic conditions as those that “are prolonged, do not resolve spontaneously, and are rarely cured completely.”6 Many readers misunderstand and think that chronic conditions are devastating illnesses. Doctors and laypeople have different definitions of the term “chronic illness.” While devastating illnesses are part of what this book is about, the word chronic means “long term.” High blood pressure is the most common chronic condition. This book has two core themes: One theme is that there is an increasing epidemic of chronic illness. Another theme is that some people have lived joyfully despite their chronic illness, and we can learn by listening to them. Like C. S. Lewis, I define joy as “moments when you were too happy to speak.”7 I do not mean to say that joy is always within the reach of sick people. Job in the Bible finds no joy until God rescues him from his skin disease and other catastrophes and restores Job’s fortunes. Some people who suffer on this earth will find happiness only in heaven, after they die. Nevertheless, it can be encouraging to read about the minority of sick people who manage, against all odds, to remain happy during this imperfect earthly life. Although there has been an epidemic of chronic diseases over recent decades, there is not necessarily a progressive increase in the amount of human suffering. Why? Because the diseases are sometimes less devastating than they used to be. We are learning to diagnose them earlier and manage them better.8 Among the elderly in the United States, there is a decrease in the level of disability.9 This is not true for younger age groups,10 but it is true for the elderly.11 People age sixty-five and older are less disabled today by the same diseases than their grandparents would have been if they had been afflicted with those diseases fifty years earlier. Kenneth Manton was the first to note this decline in the rate of disability among people sixty-five and older.12 We learn more from stories of success than from stories of defeat. This is a book about success and how to achieve it. I think it is valid to present in these pages a triumphant minority of sick people who find a way to remain upbeat even during this earthly pilgrimage. This is a Page 10 book about resilience, courage, spiritual virtues, and the abundance of blessings that healthy people often take for granted. My goal has been to write a book that sick people will find helpful. My experience is that these stories of successful living provide ideas and motivation for those who feel defeated. The stories inspire them to think of new ways to accept the unacceptable and live with incurable illness. Like the phoenix rising out of the ashes, this book abounds with paradoxes. In my twenty-five years as a physician, I have spoken with thousands of people who adapted to their chronic diseases, sometimes well, sometimes poorly. Usually people find a way to cope with sickness, not because they want to but because, if it is neither curable nor lethal, what other choice do they have? Dr. Dennis Dobkin, a cardiologist I know, says, “I always wonder how I would do with a devastating illness. Would I be one of the ones who were crushed, or would I be one of the few who kept my head above water? I fear I would not be able to do it! It is incredible what some people live with, either their own illness or something wrong with their child. Some parents take care of a sick child for fifty years! As a doctor you meet some awesome people, real heroes.” This book will not focus only on sick people. We will focus also on unpaid caregivers, like the parents that Dr. Dobkin mentions. The problems of caregivers are different from those of sick people. It is important that we keep them in mind also. Chapter 8 will especially address caregivers whom I interviewed. My own chronic illness has been major depression. I inherited it from my father, who had it worse than I. My tendency toward gloom and pessimism has waxed and waned since early childhood. It is insidious. Without realizing it, I drift into the assumption that people are hostile and life is grueling. My tendency toward negativity is the opposite of what is taught in the Bible, which is a book that encourages optimism, because, after all, God triumphs in the end. I have had a lot of therapy and antidepressant medicines over the years. But the medicine that has helped my disease the most is what I experienced in writing this book. I learned from my teachers—the people I interviewed— how to live a healthier life. Currently I am off all medicines and am exercising every day. I have consciously broadened my commitment to the people who are in my life: my wife, Maureen, Page 11 and my children, the members of my church, my widowed mother, and my friends. By studying the book that the Lord has assigned me to write, I have learned how to live a happier life. This book is my version of Complementary and Alternative Medicine (CAM), and it’s proven to be better than Prozac. Life sometimes feels like a jumbled chaos. Each person makes meaning of it in a different way. Amidst all the ambiguity and confusion of a long- term disease, some people feel defeated, while others rise to the challenge and lead triumphant lives.

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