Being Mortal: Medicine and What Matters in the End

She was glad we’d spoken, nonetheless, and so was I. Because the day after her discharge from the hospital, she started vomiting again. The blockage was back. She was readmitted. We put the tube back in.

 

With a night of fluids and rest, the symptoms once again subsided without need for surgery. But this second episode jolted her because we’d spoken about the meaning of a blockage, that it was her tumor closing in. She saw the connections between events of the previous couple of months, and we talked about the mounting series of crises she’d experienced: the third round of chemotherapy after the previous one had failed, the bad side effects, the pulmonary embolism with its terrible shortness of breath, the bowel obstruction after that, and its almost immediate return. She was starting to grasp that this is what the closing phase of a modern life often looks like—a mounting series of crises from which medicine can offer only brief and temporary rescue. She was experiencing what I have come to think of as the ODTAA syndrome: the syndrome of One Damn Thing After Another. It does not have a totally predictable path. The pauses between crises can vary. But after a certain point, the direction of travel becomes clear.

 

Douglass did make that trip to Florida. She put her feet in the sand and walked with her husband and saw friends and ate the no-raw-fruits-or-vegetables diet I’d advised her to eat to minimize the chance a fibrous leaf of lettuce got jammed trying to make it through her intestine. Toward the end of the time, she had a fright. She developed bloating after a meal and returned home to Massachusetts a couple days early, worried that the bowel obstruction was back. But the symptoms subsided, and she made a decision. She was going to take a break from her chemotherapy, at least for now. She didn’t want to plan her life around the infusions of chemotherapy and the nausea and the painful rashes and the hours of the day she’d spend in bed with fatigue. She wanted to be a wife/mother/neighbor/friend again. She decided, like my father, to take what time would give her, however long that might be.

 

*

 

ONLY NOW DID I begin to recognize how understanding the finitude of one’s time could be a gift. After my father was given his diagnosis, he’d initially continued daily life as he always had—his clinical work, his charity projects, his thrice-weekly tennis games—but the sudden knowledge of the fragility of his life narrowed his focus and altered his desires, just as Laura Carstensen’s research on perspective suggested it would. It made him visit with his grandchildren more often, put in an extra trip to see his family in India, and tamp down new ventures. He talked about his will with my sister and me and about his plans for sustaining beyond him the college he’d built near his village. One’s sense of time can change, though. As the months passed without his symptoms worsening, my father’s fear of the future softened. His horizon of time began to lift—it might be years before anything concerning happened, we all thought—and as it did, his ambitions returned. He launched a new construction project for the college in India. He ran for district governor of Rotary for southern Ohio, a position that wouldn’t even start for another year, and won the office.

 

Then, in early 2009, two and a half years after his diagnosis, his symptoms began to change. He developed trouble with his right hand. It started with the tingling and numbness in the tips of his fingers. His grip strength gave out. On the tennis court, the racket began flying out of his hand. He dropped drinking glasses. At work, tying knots and handling catheters grew difficult. With both limbs now developing signs of paralysis, it seemed like he’d come to his line in the sand.

 

We talked. Wasn’t it time for him to stop practicing surgery? And wasn’t it time to see Dr. Benzel about surgery for himself?

 

No, he said. He wasn’t ready for either. A few weeks later, however, he announced that he would retire from surgery. As for the spinal operation, he still feared he’d lose more than he’d gain.

 

After his retirement party that June, I braced for the worst. Surgery had been his calling. It had defined his purpose and meaning in life—his loyalties. He’d wanted to be a doctor since the age of ten, when he saw his young mother die from malaria. So now what was this man going to do with himself?

 

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