She awoke from the medically induced coma quadriplegic, with an air supply line passing over her lips and into her throat. She could not speak, nor move anything below her neck. My wife, Tina Su Cooper, was near death from pneumonia caused by food aspiration due to a severe multiple sclerosis attack, an MS “exacerbation.” I was desperate to help her, but aware that I was not a physician, just a retired physicist, whose opinions on the proper care for his wife might be met with skepticism or even hostility by the doctors and nurses.
My first task was to make clear that all possible steps should be taken to save Tina’s life. The ambulance had gotten to the hospital ahead of me. Tina told the receiving medical staff that she did not want invasive treatment, including tubes down her throat. When I arrived, twenty minutes later, I countermanded that. I have her power of attorney, because about half of MS patients have cognitive deficits due to the disease, and Tina is in that half. Sometimes she shows the intellect that carried her to honors at Cornell and Harvard and to the editorial staff of the Encyclopedia Britannica. Sometimes she falls short of that. This was no time for fuzzy thinking. Save her life … if possible.
My next goal was to reassure her. We had already handled twenty years of marriage during the last ten years of which Tina was bedridden. I believed we could handle quadriplegia, too, as long as neither of us gave up. I needn’t have worried. Her father had often told her, in her youth, to “be a brave soldier,” and she was all of that. When I asked her whether she agreed with my decision to go all out to save her life, she nodded, twice: yes, yes. When they wanted to classify her as “Do Not Resuscitate” (DNR), we said, “No, no.”
We had already been using a nurse part-time at home, and I had this nurse, Terry Bush, LPN, stay with Tina in the Critical Care Unit in the mornings. Terry was to do as little or as much as the hospital staff allowed. Her primary goal was to communicate for Tina, whom she had come to love. A secondary goal was to be there, to observe, to report to me, to insure by her presence that care was given and given properly. Not everyone can afford to do this, I know, but it was worth it to us. I was there for the afternoons, to do much the same things.
I learned as much as I could about what was needed and about what was being done. The doctor most important to her survival was her intensivist - pulmonologist, Richard F. Walker, MD, F.C.C.P., with whom we bonded. In the book I have just finished, Ting and I: A Memoir of Love, Courage, and Devotion, Dr. Walker has contributed the Forward, from which I quote a portion:
“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….”
“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….”
“Doug dedicates this book to Tina, his ‘good soldier,’ but in a larger sense, the story 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.”
Tina and I have shared seven more years of precious life together since then.
Someone must speak up when the patient cannot.