Authors: Sherwin B Nuland
How We Die (39 page)
Before embarking on a course of therapy, the oncologist met with Bob to have what he (the oncologist) later described to me in a letter as “an extended and frank discussion,” during which he “detailed the extent of metastatic disease and told him that if chemotherapy was not effective he might rapidly go downhill and expire within the next three to six months.” He reported that Bob “was very appreciative of the frank discussion, and has a cautiously optimistic but realistic attitude.”
By this time, Bob had regained the twenty pounds lost since his operation, and he was without any symptoms. In fact, he was feeling remarkably well. He understood that the drugs could not cure but were to be used “in an adjuvant or preventive fashion,” as the oncologist put it. I doubt that Bob expected even that; more likely, he was just going through the motions for the sake of Carolyn and their twenty-year-old daughter, Lisa. The treatment was begun.
Within two weeks, Bob had developed high fevers and constipation alternating with diarrhea. The skin between his corpulent buttocks was tender and reddened by the corrosive effect of the loose stools. The chemotherapy had to be stopped. About this time, narcotics were becoming necessary to control the onset of pain being caused by the enlarging liver metastases. Soon, Bob was no longer able to go to his office.
With shocking speed, the metastases grew bulkier and Bob became jaundiced as his liver was progressively replaced by cancer. Evidence appeared of a mass of tumor in his pelvis, and his legs were soon swollen with the edema that results when veins draining the lower body are blocked by cancer pressing on them. After a time, Bob could barely make his way around the house. Because Carolyn was working, Lisa stayed at home to care for him. As she would tell me years later, “We spent many long nights talking about ourselves and each other. As close as we had been before then, we became even closer as those last few months went by.”
Early on Christmas Eve, I made a house call. The DeMatteises lived in a wooded area in the hills above the outskirts of the city of whose political life Bob had so long been a driving force. Snow had begun to fall a few hours earlier, as though to honor the Christmas wish of a dying man. To Bob, this holiday had always been symbolized in an image of early nineteenth-century Dickensian joviality in which he placed himself at the center of a convivial cameraderie of festive joyousness. On this night every year since their marriage, the house had been filled with guests of every conviction and stripe, whose only shared criterion for invitation was that their host enjoyed being with them. He was at his best in a crowd, and the more high-spirited, the better. In such a company, his heart swelled and he became as large in spirit as he was in form. Even his habitual scowl absented itself from the merriment. At Christmas, Bob DeMatteis was Mr. Fezziwig and the transformed Scrooge all in one. It was his custom, in fact, to recite—not read, but recite from memory—
A Christmas Carol
to Lisa and Carolyn each year just as the holiday was about to begin. It did not surprise me to learn that Dickens was his favorite author, and this story was his favorite work of Dickens.
A Christmas Carol
to Lisa and Carolyn each year just as the holiday was about to begin. It did not surprise me to learn that Dickens was his favorite author, and this story was his favorite work of Dickens.
Bob was determined that his last Christmas would be no different from those that had come before. When the courageously smiling Carolyn opened the door, I stepped across the threshold into a house prepared for the happiest of parties. The table was set for some twenty-five people, the decorations were up, and the base of the beautifully lighted tree was hidden by piles of gifts. The guests would not begin to arrive for at least an hour, so Bob and I had plenty of time to discuss the reason for my visit. I had come to talk about hospice—I wanted its benefits for Bob. There were limits to what Lisa could do unaided now that her father’s condition was worsening daily.
We sat alongside each other on the side of Bob’s rented hospital bed, and after a while I took one of his hands in mine. Doing that made it somehow easier for me to speak. We were two men of the same age with quite different experiences of life, and one of us had almost used up his future. But in the short time left to him, Bob was able to see a form of hope that was his alone. It was the hope that he would be Bob DeMatteis to his last breath, and that he would be remembered for the way he had lived. Keeping this last Christmas in the best possible way was an essential part of fulfilling that hope. Then, he told me, he would be ready for the hospice nurses to take him into his final days.
As I said good-bye to this uncommon man who had found a courage I had not dreamed possible for him, I was the one whose throat choked closed. Bob was becoming impatient to start the laborious process of dressing before his guests arrived, and I was a reminder of what lay before him when the party ended. As I prepared to step out into the snowy night, he called after me from the bedroom, cautioning me to be careful on the slippery hills: “It’s dangerous out there, Doc—Christmas is no time to die.”
Bob made it all work that evening. He had Carolyn turn the rheostats down so that his guests would not see the full depth of his jaundice in the dimmed light. At dinner, he sat at the head of the happy, noisy table and pretended to eat, although he was long past being able to take sufficient food to get proper nourishment. Every two hours during the course of the long evening, he agonizingly dragged himself into the kitchen so that Carolyn might give him a shot of morphine to control his pain.
When all the guests had said their good-byes—so many friends of long years and decades never to be seen again—and Bob was back in bed, Carolyn asked him how the evening had been. To this day, she remembers his exact words: “Perhaps one of the best Christmases I ever had.” And then he added, “You know, Carolyn, you have to live before you die.”
Four days after Christmas, Bob was enrolled in the hospice home-care program, and not a day too soon. In addition to nausea and vomiting and the pain of his liver and pelvic tumor masses, he was now having high fevers. On New Year’s Eve, he had a temperature of 106. His watery diarrhea was at times beyond control and frequently caught him unawares. Though it seemed impossible for the situation to worsen, it did. Finally, on January 21, Bob agreed to be admitted to the inpatient building of Connecticut Hospice in Branford. By then his liver, which in a normal state should not have extended lower than his rib margin, could be felt (even through the still-thick abdominal wall) ten inches lower than that. It was hugely enlarged, and almost all of it was cancer. In spite of the advanced degree of malnutrition, the hospice admission note records that “He was still massively obese.”
Although reluctant to give in, Bob admitted to being immensely relieved on entering the inpatient facility. His underlying anxiety and restlessness had again become a problem, requiring heavy doses of tranquilizers in addition to the morphine. He was able to take only limited amounts of liquid by mouth; after his admission, he seemed to weaken by the hour. Still he persisted in struggling to get up to urinate, and he made ineffectual attempts to walk. No matter his acceptance of death, he seemed unable to let go of life.
On the afternoon of Bob’s second day at the hospice, he suddenly became even more agitated than before. Carolyn and Lisa began to cry because they did not have it in their power to help him when he said that he wanted to die at that moment—immediately. As he stared pleadingly at them, he opened out his still-rotund arms and drew the two women close to him in the old protective embrace they knew so well from many times past. Holding his family together that way, he begged of them. “You have to tell me it’s okay to die. I won’t until you tell me it’s okay.” He would accept nothing less than their permission, and only when they gave it did he become calm. A few moments later, he turned to Carolyn and said, “I want to die.” And then, his voice a whisper, he added, “But I want to live.” After that, he became quiet.
Bob was stuporous most of the next day. By afternoon, he had not spoken, but Carolyn believed he could still hear her voice. She was speaking softly, telling him how much his life had meant to them, when all at once his face broke out in a huge smile, as if through closed eyes he was seeing some glorious thing. “Whatever it was he saw,” Carolyn later told me, “it must have been beautiful.” Five minutes later, he was dead.
The funeral was huge, almost a public event in Bob’s city. The mayor was there and an honor guard of police met his coffin at the church. He was buried with a letter of good-bye in the pocket of his suit, from Lisa. As the cherry-wood casket was being lowered into the grave, Carolyn’s uncle noticed that its lid was smudged by a small stain, where Lisa’s tears had fallen on it.
Bob is buried in a Catholic cemetery about ten miles from my home. There are no monuments in those rolling hills of well-tended grave sites, as though to affirm each person’s equality in death; only footstones identify the resting places. I went to visit Bob’s grave during the time I was writing these last few pages, to pay homage to a man who had found a new meaning in his life when he knew he was soon to die. He had taught me that hope can still exist even when rescue is impossible. I would somehow forget his lesson when my brother fell ill a decade later, but that does not diminish its truth.
Carolyn had told me that while he was still able, Bob had arranged to have his favorite words from his favorite work of Dickens inscribed on his grave marker, but still I was unprepared for their effect when actually seen. Engraved across the granite face of the footstone was the epitaph by which Bob DeMatteis had chosen to be remembered: “And it was always said of him that he knew how to keep Christmas well.”
XII
The Lessons Learned
R
ABBIS OFTEN END
a memorial service with the sentence, “May his memory be for a blessing.” It is a specific formula of words that is not familiar to the non-Jews who are present when it is said, and I have listened in vain for it in churches. Though it expresses what is obviously a universal wish, this simple thought deserves more frequent pondering by all of us, and not only in houses of worship.
ABBIS OFTEN END
a memorial service with the sentence, “May his memory be for a blessing.” It is a specific formula of words that is not familiar to the non-Jews who are present when it is said, and I have listened in vain for it in churches. Though it expresses what is obviously a universal wish, this simple thought deserves more frequent pondering by all of us, and not only in houses of worship.
The hope that brought a measure of peace to Bob DeMatteis was to be found in the memory he could create and in the meaning his life would have for those left after he was gone. Bob was a man who lived with the constant awareness that one’s existence is not only finite but always in danger of ending unexpectedly. Therein lay the seed of that awful anxiety induced by things medical, but therein also lay the germinal focus of his acceptance when the final illness announced itself.
The greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope we can all achieve, and it is the most abiding of all. Hope resides in the meaning of what our lives have been.
Other sources of hope are more immediate, but some of them will be impossible to attain. In my medical practice, I have always assured my dying patients that I would do everything possible to give them an easy death, but I have too often seen even that hope dashed in spite of everything I try. At a hospice too, where the only goal is tranquil comfort, there are failures. Like so many of my colleagues, I have more than once broken the law to ease a patient’s going, because my promise, spoken or implied, could not be kept unless I did so.
A promise we can keep and a hope we can give is the certainty that no man or woman will be left to die alone. Of the many ways to die alone, the most comfortless and solitary must surely take place when the knowledge of death’s certainty is withheld. Here again, it is the “I couldn’t take away his hope” attitude that is so often precisely how a particularly reassuring form of hope is never allowed to materialize. Unless we are aware that we are dying and so far as possible know the conditions of our death, we cannot share any sort of final consummation with those who love us. Without this consummation, no matter their presence at the hour of passing, we will remain unattended and isolated. For it is the promise of spiritual companionship near the end that gives us hope, much more than does the mere offsetting of the fear of being physically without anyone.
The dying themselves bear a responsibility not to be entrapped by a misguided attempt to spare those whose lives are intertwined with theirs. I have seen this form of aloneness, and even unwisely conspired in it, before I learned better.
As my grandmother became no longer able, Aunt Rose gradually took over the management of our household and the mothering of its two boys. Even the matriarchal role in the extended family fell to her as Bubbeh relinquished it year by year. Early each morning, Rose went off to stitch dresses for a garment manufacturer on Thirty-seventh Street, and ten hours later she arrived home to clean the house and prepare dinner. Old World Jews did not eat lightly, and our evening meal was the result of a great deal of hard work. I am a long distance and a long time from 2314 Morris Avenue, but yesterday’s memories of Thursday evenings are very clear, when Aunt Rose scrubbed and cleaned every corner of the apartment in preparation for the Sabbath, finally falling into bed near midnight, drained of energy. At six next morning, she was up again and off to work.
Rose did what she could to be brusque, but her manner was transparent. She had a pair of those blue eyes that signified our small band, and the twinkle in them was as sure to follow after an outburst of anger as is the inevitable sunny aftermath of a brief summertime shower. She was a sucker for a hug, and as we grew older, her need to appear stringently unrelenting in her expectations of her two boys slowly let itself be recognized as the love it really was. Though Harvey and I could usually tease her out of the censure that she never hesitated to express at the less admirable aspects of our behavior, we nevertheless feared her disapproval, which in my case usually took the form of denunciations, often in a colorful Yiddish, of my entire worldview and character. Aunt Rose was my little shtetl-bred superego. Harvey and I adored her.
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