At what point does an illness go from being a challenge in one’s life to becoming one’s life? The progress of the transformation is so gradual, the change so nearly imperceptible, that one barely has time to realize that while a short-term coping strategy is helpful, a long-term plan is critical to the well-being of all involved. Few if any counseling programs that I’ve encountered deal with the long haul. You make it up as you go along.
Disabling degenerative illness was part of my family’s life for many, many years. We coped with little guidance or advice, few respites, and no cause for optimism. Given our family history and background, it would not have been surprising if religion had played a major role. But the most help came from ordinary people in small acts of thoughtfulness and kindness.
My parents were first-generation Americans raised in the culture of the Polish Catholic Church. A beloved aunt became a nun. A deference to the male priesthood was a continuing thread in my mother’s life, though she seemed aware that as humans, priests (and the Catholic clerical structure) were imperfect. She reserved her devotion and allegiance for God and the Virgin Mary, and when I, an only child, was born with a life-threatening condition, she dedicated my life to the Virgin in return for my survival. Every May 1 thereafter we would visit a replica of the Fatima grotto to place flowers before the statue.
Growing up I was a dutiful Catholic, never missing a weekend Mass and completing all the sacramental milestones. But in high school we were taught to question and discuss. Although I set off for a Newman Center service that first Sunday away at college, I never made it, and I never attempted another trip.
Our family’s normal course of change—my parents enjoying fewer responsibilities and looking forward to retirement; me developing a separate, independent life—was interrupted during my sophomore year in college. My father’s arteriosclerosis led to bypass surgery, which led to stroke, which led to paralysis of his “good” side and gangrene and eventual amputation of his leg on his “bad” side. Eleven years of confinement to a wheelchair followed, in nursing homes, the VA hospital, and at home where my mother cared for him. There was no hope for a cure or even improvement—just for some relief from the boredom and monotony. Various crises cropped up that kept us on our toes and honed our patient-advocate skills—caregivers who didn’t show up, caregivers who stole, medical advice that was disinterested or inaccurate, insurance companies that needed to be kept honest. But there were bright spots, too, and those stand out clearly against the blur of bad. There were friends and relatives who visited and helped give my father a change of scene or get him to important family events. Others brought little surprises to cheer us up. Still others helped with house repairs. Except for occasional visits from a priest, I have no memory of the church sending any of its considerable resources our way. Some of the facilities that my father found himself in over the years were religious-owned, but it was the lay volunteers who extended themselves the most.
However, the church remained an important part of my parents’ culture (my mother regarded the selection of Karol Wojtyla as the first Polish pope a miracle), and however distant our relationship had become, we did turn to the church for the milestone moments. Not wanting to make my mother’s already difficult life more stressful, I arranged to marry in the church, although the service would be without Communion (not easily done in Catholic tradition). This avoided my having to participate in a sacrament that I no longer believed in and accommodated the physical limitations of my father, who could not sit through a long ceremony. It was arranged by the younger priest of the parish—when the older one found out on the day of the ceremony, he almost stopped it but unhappily relented.
After eleven years of being an invalid, my father died. That should have been enough for any family—which now included my husband, who had become an equal partner in dealing with the consequences of my father’s illness. But within a little more than ten years, my mother’s health started a decline that lasted until her death seventeen years later. It began with uterine and ovarian cancer and continued with a car accident and a series of falls, which worsening osteoporosis guaranteed ended in broken bones every time. Each incident resulted in what should have been a temporary stay in a nursing home for rehab but turned into a struggle—my mother against her family and the health professionals. Psychiatrists assessed her competency: paranoid schizophrenia with narcissism was their diagnosis. Although exaggerated, her behavior was not new—it just finally had a name. But that development did not solve the problem. Medication helped (when she took it). Facilities vacillated between declaring her incompetent and honoring her wishes—they took whatever action worked best for them. They were more than willing to let her go home to an unsafe situation just to get her out of their hair. As had been the case with my father, many of the facilities were religious-owned, but their operations were often more poorly run and less compassionate than their secular counterparts. (During one of my mother’s stays at a religious hospital, I discovered that she wasn’t eating because no staff member thought to elevate the head of her bed or unwrap her utensils. Her concerned roommate alerted us to the situation.)
Through it all we were constantly on edge for “the call”—from her if she had fallen at home; from the hospital if something had happened in public and she had been taken to the ER; from the car salesman saying that once again she had taken a cab to the dealer and tried to buy a car even though she shouldn’t be driving; from the police because she was again fighting with the neighbors.
Finally, in her late eighties and after a bout with congestive heart failure and a period of forgetting to eat, she accepted placement in an assisted living facility for people with dementia. Those were probably the best of her later years. Regular medication and meals put her on an even keel. Although she never did get along with many of the other residents or occupy herself with self-directed activities, she became a darling of the staff and was given a lot of attention. (In a perfect world, health aides would be among the best-paid people on the planet.) Still, that system is also far from perfect—we still got “the call” many times, as health crises above a certain level had to be dealt with outside the facility.
The imperfect system finished my mother off in the end: after having wandered into another resident’s room (something that happened quite frequently—on one occasion I found another resident sleeping in my mother’s bed), the room’s rightful occupant pushed her and she broke both wrists. She had just turned ninety. Within a few days, she began refusing food and drink.
In a departure from normal practice, the facility allowed her to stay and provided twenty-four-hour care with the support of hospice. One aide tried to do more than watch by her bedside—-she offered comfort by constantly talking and singing. Unfortunately, she chose prayers and religious songs. Although my mother was largely incommunicative at this stage, the look in her eyes reminded me of a trapped and helpless animal—her religion had always been important to her, but its daily practice was a private matter. I felt I needed to ask the aide to stop the prayers and the hymn singing, but she had only the best intentions—I did not want to offend her or diminish her enthusiasm for making my mother’s last days as comfortable as possible. In the end I talked to a supervisor, and the behavior that was so distressing to my mother desisted. Fortunately, the quality of her care did not.
She was dead within a week. Again we turned to the church for the final act—last rites and a church funeral. But again it was the people, not the church, who made it meaningful. The priest could not be bothered to hear much about my mother’s personal life so that he could incorporate those details into the service or to have any of us speak at the service—he told us that he needed to get it over with so he could keep the Ash Wednesday services on schedule. (The first visitor at the wake was startled, upon entering the funeral home, to hear him joking with the funeral director. “We put the ‘fun’ back in ‘funeral,’” he explained.) But long-lost relatives, friends, and coworkers sent food, flowers, money, and turned up for the wake and funeral, even though many had never met my mother. We have since worked at maintaining those connections.
The articles in this section focus on how seculars deal with chronic or serious illness—both their own and close others’—and other brushes with death. My own experience began before I had even heard of secular humanism, but it illustrates, once again, that crisis does not necessarily drive one to embrace religion. On the other hand, crisis can reveal religion’s shortcomings and flaws. It is not religion that comes through when one needs help. Bad things of various magnitude happen in life to all people, for reasons often unknown or not understood. But we have only each other to help us through—neither gods nor saints nor their earthly representatives are going to miraculously change the course of events. In our case, it was ordinary people who brought us genuine aid and comfort. It is the good memories of their actions that we have taken away from our experiences and that stay uppermost in our minds.