"Be here now."
"The unexamined life is not worth living."
"Don't look back. Something might be gaining on you."
Why am I writing this memoir? The simplest answer is that Tina asked me to, many times, and it is hard to deny such a "brave soldier," such a beloved person, what she would like. Parts of it were a present for her 67th birthday, 3 April 2011.
Staying in the here and now is a good way to keep from sadness or worry. Happier previous times can be a source of joy or remorse, taken by themselves or compared with the present. Satchel Paige, one of baseball's greatest pitchers, warned us that too much attention to what is behind us can slow us down. True enough.
Re-examining one's life can bring greater insight, though still rather limited, being wholly subjective. Socrates advised, "know thyself." Robert Burns recognized the problem, "O would some power the giftie gie us to see ourselves as others see us." Introspection gets us only so far.
Why should anyone read this? Family, friends and acquaintances may find it interesting because they know the two people involved, were involved themselves, know others who intersected our lives. Others may find the story of our enduring love of value, too, a story rarer these days than before, we think. Those who care for paraplegic or quadriplegic patients, including those with multiple sclerosis, will hopefully find it informative and encouraging.
This story starts with Tina's determination to live on, despite great handicaps, then explores our pasts to understand our present and perhaps predict our future. The narrative is followed by my reflections on divers topics. We finish with recollections and tributes from friends, family and nursing staff members who have chosen to contribute, to honor this warrior.
Writing a book is a scary task. My first book, THE VARIABLE-SLIT IMPACTOR AND AEROSOL SIZE DISTRIBUTION ANALYSIS, my 320-page doctoral dissertation, was published in 1974 in about a dozen bound copies, which more than satisfied the public demand for it.
I have read that hundreds of thousands of new titles are published yearly (in the U.S.), only 2% of which sell more than 500 copies. I am not envisioning commercial success. This book is a gift to Tina, to myself, to friends, family, staff, others who have helped us, and those unknown to us who come to profit from it.
Getting underway, I have lots of adages to encourage me:
"Work is love made real."
"Do it now."
"Strike while the iron is hot."
"Make hay while the sun shines."
"He who hesitates is lost."
"The journey of a thousand miles begins with a single step."
"Eat the elephant one bite at a time."
"Focus" [recent book by Leo Babauta]
"When the going gets tough, the tough get going."
So, let's get going.
Douglas Winslow Cooper, Ph.D.
P.S. Writing this memoir has turned out more pleasurable than I anticipated, like writing a very long letter to a friend. Those who wish to see us as we were in 2005 can link to our son's web site
Doug Cooper’s homage to his wife, presented as a 67th birthday gift, is a story about the power of love to overcome cultural taboos, through persistence and patience, and to triumph over a near-fatal illness and daunting physical disability. It is also a celebration of optimism over despair by two people passionately committed to each other “for better or worse, in good times and bad, in sickness and in health.”
This tribute from husband to wife will remind those who read it of the “better angels of our nature,” as it inspired this physician who was fortunate to have shared a brief moment of their lives.
Tina entered the critical care unit of Orange Regional Medical Center because of a catastrophic illness. I was part of the intensivist team providing her care through her 100-day hospital ordeal. Probably because Tina, Doug and I grew up in New York, shared common experiences and social values, are of the same age, and went to rival colleges in the same years, we developed a natural rapport. As I have been accorded in the book a disproportionate credit for Tina’s survival, I must state that our ultimate success resulted from the efforts of the entire health care team and, in no small measure, the efforts of Doug and Tina themselves.
Intensive care specialists have learned to cope with the possibility of bad outcomes, in part, by depersonalizing the patient into a series of physiologic challenges, much like the combat soldier might resist making very close friends when the chance of death is ever-present. The battle for life then consists of attempts by the medical staff to raise blood oxygen, combat infection, preserve nutrition and urinary output and avoid hospital-acquired infection.
There is also the danger that the physician can partially replace the patient as the object of care by worrying about the frequency of reportable iatrogenic complications, medico-legal risks and re-imbursement considerations.
Dr. Jerome Groopman in his excellent book, How Doctors Think, describes the biases and decision-making consequences of such distractions, as well as the dangers of projecting one’s concept of meaningful existence on others. He specifically singles out the important role of the patient or patient advocate in re-focusing the physician to address what is objectively possible and beneficial.
Such a bias crept into my own thinking as my mounting feelings of hopelessness at returning Tina to a level of function worthy of the effort were rejected by Doug. His exhortations for better care were often viewed by me as selfishly motivated and without sufficient regard for the burden and suffering the illness was creating for Tina. My attempts to gauge her feelings during Doug’s infrequent absences from her bedside revealed that her goals mirrored his. I attributed her attitude to a desire not to hurt or disappoint him, or to stereotypical Asian stoicism.
Doug tirelessly directed the attention of the health care team to seemingly trivial aspects of her care, asking detailed questions and demanding satisfactory answers, even occasionally suggesting changes in her care plan. My periodic annoyance, hopefully not always apparent, served to refocus my attention away from the pathophysiology and back to Tina. What I did not initially realize was that Doug’s persistence was improving his wife’s care. I began to marvel at the tenderness he lavished on Tina that both sustained her morale and dispelled all lesser explanations I might have conjured up to explain the dynamics of their relationship.
Eventually, Tina left the hospital and went home to a cocoon of nurses, catheters, and ventilators, and I saw her several times a year in my office. Their mutual affection seemed to grow stronger with time and was uplifting to watch, given the relentless burdens Tina’s illness imposed on both of them.
Doug dedicates this book to Tina, his “good soldier,” but in a larger sense it is also a tribute to his powerful advocacy for her survival. I believe their love saved them both.
My participation in Tina’s care made me a better physician and provided me with one of the most rewarding experiences of my professional career.
I want to thank you both, Tina and Doug, and wish you continued years of happiness and joy together.
Richard F. Walker, MD, FCCP