New York, New York, United States
|Photo by S. Tsuchiya on Unsplash.|
My parents lived into their nineties. Before they died, they endured years of dementia. Aware of my potential genetic inheritance, I have long harbored a deep dread of what my future might hold. If my curved pinky fingers were inherited from my mother and my flat feet and inwardly curving big toes were traits borne by almost all Perlmans, why would my brain be spared?
Although different in temperament, both of my parents had been bright. My father’s disposition was unassuming despite his success and marked by extraordinary warmth and generosity. My mother was simultaneously loyal and demanding and fiercely protective of her family. Their love of and devotion to each other was powerful.
Dementia flayed their intelligence, at first slowly and then dramatically, stripping them layer by layer of their personhood. Random activity, nonsensical speech, incoherent behavior, aberrant perceptions, and mood instability marked their last years. My father experienced fleeting moments of lucidity and expressed horror at what he had become. My mother, once afflicted, never outwardly reflected on her condition. Despite everything, they continued to show affection for their family, were always pleased to see us, and greeted us with kisses. A close-knit, three-generation family, we witnessed their decline with initial disbelief and frustration, then with resignation and compassion.
My first request of the deity was that I not live to be lost into dementia.
Being diagnosed with prostate cancer at the age of sixty-seven removed that worry. I opted for a radical prostatectomy and my urologist advised me to prepare myself physically and mentally. On our annual vacation I took long daily swims, focused my thinking, and tried to prepare and fortify my family. I shared all relevant medical information with them, since I have found that scary diagnoses often weigh most heavily on a patient’s spouse and children. The initial reports from the surgery, noting the absence of local spread and negative lymph nodes, lifted our spirits.
But a rapidly rising PSA soon thereafter smashed those hopes and I was badly shaken. Radiation salvage treatment was recommended and I scheduled my sessions immediately.
I next addressed the deity during that course of radiotherapy. I wondered if the deity received many requests from Jewish agnostics whose beliefs tilted towards the atheistic, a group that our rabbi asserts is not rare. (The Nobel physicist I.I. Rabi reportedly said, “The god I don’t believe in is Jewish.”) I used to darkly joke that I, like my parents, would probably live a long life but would not be aware of it. I now shared with my family that dying in my nineties after a period of dementia no longer seemed unacceptable. My son expressed that my cancer seemed to disrupt what we had anticipated, upsetting the natural order like the World Series win by the Boston Red Sox after an eighty-six-year drought.
But the radiotherapy was successful. When my PSA remained at zero for five years, it was agreed that I was likely out of the woods. Then, during a sonogram scheduled to look for gallstones, a splenic mass was identified. It was a serendipitous finding with deadly potential. A diagnosis of lymphoma was soon made, and a hematologist was added to my deepening bench of medical specialists.
The year before, when I was seventy-three, my grandson was born. We had waited a long time for a grandchild and were smitten by him. I was overjoyed when my son let me know that his son’s middle name would be my first name, just as my son’s middle name had been my father’s. A new family tradition had been established and I was ecstatic that our family’s name would continue for another generation. At the time, I calculated that I would have to reach the age of eighty-six to attend my grandson’s bar mitzvah at thirteen, which seemed possible, if a bit of a stretch. While I wanted to participate in the ceremony and witness his reading from the Torah, I wanted even more to live long enough so that he would remember me based on his experience of time we had spent together. So when I was diagnosed with cancer for a second time that became my next request of the deity.
The Covid-19 pandemic delayed the start of my immunochemotherapy. While I remain optimistic about my future and the likelihood of spending many more years loving my grandson, I do not know whether the deity will deliver on my most recent request. I hope my repeated requests do not seem too pesky.
A pandemic year that claimed five friends and colleagues in addition to those taken by the more usual causes, in addition to being treated for cancer, made that year one lived under the pall of death. I thought about mortality more than ever before.
And what odd and curious thoughts I have had.
When I have thought of dying, I think, “I’ll miss them,” rather than “They’ll miss me.” How backwards my mind seemed to have it.
I had procrastinated in becoming an organ donor because of an idiosyncratically strong desire to be intact at burial. Ironically, only after having cancer did I check the donor box on my license. It seems crazy how, despite my supposedly “scientific” thinking, I played this process out so irrationally.
Years ago, my mother-in-law remarked as her husband was buried on a sleety late winter day, “Oh, how he hated the cold.” As I peered into the grave, I thought how much I would want an electric blanket under similar circumstances. Recently, those thoughts returned as I watched a friend’s funeral on Zoom from my warm living room on an icy cold day with snow around his open grave. There seemed to be no way to stop this primitive thinking from intruding into my supposedly rational mind.
Decades ago, when serving as a pallbearer at an uncle’s burial, I noticed a young cousin placing his baseball cap on his beloved grandfather’s coffin. Before the casket was lowered, his mother returned the cap to him, explaining, “Grandpa won’t need it.” What thoughts were behind this youngster’s loving act of mourning? Giving away a prized possession was a selfless act. Did he think his grandfather would somehow be able to don it in the hereafter? What had his mother expressed by retrieving it? Was she using the internment as a teaching moment or was she simply being her practical? Our family does not bury our own as the ancient Egyptians did, with household possessions meant for use in the world to come. I wonder what the graveside interplay between generations might say about our current thinking about death.
We Jews bury our dead in closed, simple pine coffins. I was therefore surprised that during aninut, the period between death and burial, my beloved uncle lay before us in an open casket. At the shiva, the period of mourning after burial, I asked my aunt about what I had seen. She explained that she made that choice because she thought he “had looked so well.” For me, that did not provide an adequate explanation for her perplexing decision to depart from our tradition. I pondered whether an open casket had come to be viewed as acceptable by some nonobservant Jews in the same way that Christmas trees had been relabeled as Chanukah bushes to make having a holiday evergreen acceptable.
My feisty, poker-playing aunt had a glass eye. During a conversation long after she had died, her son-in-law shared her children’s concern that another person’s remains might occupy her grave. I glibly suggested that any doubt could be allayed by searching for the glass eye, which would not have disintegrated. In truth, I understood that when they visited her grave at her yahrzeit, the anniversary of her passing, to recite the kaddish, the mourner’s prayer of affirmation despite loss, they desired assurance that they were truly in her presence. Why, I wondered, should it really matter? But I knew that it did.
This new awareness of my primitive thinking leaves me musing over one final question: “Am I a modern man of medicine or am I just a modern medicine man?”
DR. BARRY PERLMAN‘s memoir, Rearview: A Psychiatrist Reflects on Practice and Advocacy In a Time of Healthcare System Change, was published during 2021. After graduating from Yale Medical School, Perlman, now retired, did his residency at the Mount Sinai School of Medicine. After being on its full-time psychiatric faculty, he became the director of psychiatry at Saint Joseph’s Medical Center, Yonkers, NY, an affiliate of New York Medical College, where he was Clinical Associate Professor of Psychiatry. During his career Perlman served as president of the New York State Psychiatric Association and chair, NYS Mental Health Services Council.