THE UNWINDING OF THE MIRACLE
A Memoir of Life, Death, and Everything That Comes After
By Julie Yip-Williams
By Lori Gottlieb
When we meet Julie Yip-Williams at the beginning of “The Unwinding of the Miracle,” her eloquent, gutting and at times disarmingly funny memoir, she has already died, having succumbed to colon cancer in March 2018 at the age of 42, leaving behind her husband and two young daughters. And so she joins the recent spate of debuts from dead authors, including Paul Kalanithi and Nina Riggs, who also documented their early demises. We might be tempted to assume that these books were written mostly for the writers themselves, as a way to make sense of a frightening diagnosis and uncertain future; or for their families, as a legacy of sorts, in order to be known more fully while alive and kept in mind once they were gone.
By dint of being published, though, they were also written for us — strangers looking in from the outside. From our seemingly safe vantage point, we’re granted the privilege of witnessing a life-altering experience while knowing that we have the luxury of time. We can set the book down and mindlessly scroll through Twitter, defer our dreams for another year or worry about repairing a rift later, because our paths are different.
Except that’s not entirely true. Life has a 100 percent mortality rate; each of us will die, and most of us have no idea when. Therefore, Yip-Williams tells us, she has set out to write an “exhortation” to us in our complacency: “Live while you’re living, friends.”
Before her diagnosis in 2013, Yip-Williams had done more than her share of living. It was, indeed, something of a miracle that she was alive at age 37 when she traveled to a family wedding and ended up in the hospital where she received her cancer diagnosis. Born poor and blind to Chinese parents in postwar Vietnam, she was sentenced to death by her paternal grandmother, who believed that her disability would bring shame to the family and render her an unmarriageable burden. But when her parents brought her to an herbalist and asked him to euthanize her, he refused.
The family would eventually survive a dangerous escape on a sinking boat to Hong Kong, and less than a year later make their way to the United States, where at 4 years old, Yip-Williams had a surgery that granted her some vision, if not enough to drive or read a menu without a magnifying glass.
She would go on to defy her family’s expectations, eventually graduating from Harvard Law School, traveling the world solo and working at a prestigious law firm where she meets Josh, the love of her life. She becomes a mother and, soon after, a cancer patient, and soon after that, because of this unfortunate circumstance, a magnificent writer.
During the five years from her diagnosis to her death, we enter her world in the most intimate way as she cycles through Elisabeth Kübler-Ross’s famous stages of grieving: denial, anger, bargaining, depression and acceptance. Describing the ways in which terminally ill patients cope with their own deaths, these stages weren’t meant to delineate a neat sequential progression but rather the various emotional states a dying person might visit, leave and visit again.
Yip-Williams toggles between optimism and despair, between believing she’ll defy the statistics as she had so many times in her life — “odds are not prophecy” — and trying to persuade her husband to confront their harrowing reality. She makes bargains with God, just as she did as a young girl when, in exchange for her poor vision, she asked for a soul mate one day. (“God accepted my deal!”) She posts pictures of contented normalcy on Facebook — of meals cooked, a car purchased — but rages at her husband, healthy people, the universe and, silently, at the moms at a birthday party who ask how she’s doing. “Oh, fine. Just hanging in there,” she replies, while wanting to scream: “I didn’t deserve this! My children didn’t deserve this!” She frets about the “Slutty Second Wife” her husband will one day marry and the pain her daughters will experience in her absence. And, near the end, she oscillates between being game to try every possible treatment and accepting that nothing will keep her alive.
“Paradoxes abound in life,” Yip-Williams writes in a heart-rending letter to her daughters; she asks us to confront these paradoxes with her head-on. One of the paradoxes of this book is that Yip-Williams writes with such vibrancy and electricity even as she is dying. She moves seamlessly from an incisive description of her mother as “the type of woman who sucks blame and guilt into herself through a giant straw,” to the gallows humor of “Nothing says ‘commitment to living’ quite like taking out a mortgage,” to the keen observation “Health is wasted on the healthy, and life is wasted on the living.” Unlike the woman in her support group who, after being given a terminal prognosis, defiantly declares, “Dying is not an option,” Yip-Williams prepares meticulously for her death while paying close attention to the life she will one day miss: “the simple ritual of loading and unloading the dishwasher. … making Costco runs. … watching TV with Josh. … taking my kids to school.”
This memoir is so many things — a triumphant tale of a blind immigrant, a remarkable philosophical treatise and a call to arms to pay attention to the limited time we have on this earth. But at its core, it’s an exquisitely moving portrait of the daily stuff of life: family secrets and family ties, marriage and its limitlessness and limitations, wild and unbounded parental love and, ultimately, the graceful recognition of what we can’t — and can — control.
“We control the effort we have put into living,” Yip-Williams writes, and the effort she has put into it is palpable. Of all the reasons we’re drawn to these memoirs, perhaps we read them most for this: They remind us to put in our own effort. It would be nearly impossible to read this book and not take her exhortation seriously.
Five minutes. That is all I had to make my case: to convince this 80-year-old man to fill out an advanced care directive. John, as I’ll call him, had served in the military for over thirty years, risking life and limb for his country. Many times he came close to death, suffering fractures and blast injuries and witnessing the raw, unfiltered trials of war. He retired as soon as his pension kicked in, and hadn’t worked in over 25 years.
Neither had he paid much attention to his health. Once, he had a loving wife and two children, and was concerned with his body—how it would hold up to the wear and tear of aging. But his wife had passed away ten years earlier, and his children were now estranged. John lived alone in his house, lonely and unemployed. And so his hypertension, coronary artery disease, and chronic kidney disease no longer delivered the same existential fright. All John wanted to do was sit in his home, away from others. And that is what he did.
Then, two months prior to our meeting, he was hospitalized with pneumonia. Weeks later, he was hospitalized again. And again. And a fourth time in two months, despite a week-long stay involving critical care and mechanical ventilation just days beforehand. He was running a fever, and his breath was labored. He lost his appetite and control of his bowels. The combination left John nutritionally shortchanged, and his medical team was forced to place a feeding tube directly into John’s stomach, passing straight through his abdominal wall.
Yet for all this treatment, John’s prognosis wasn’t looking any brighter. Lab tests returned with clear signs of malnutrition and vitamin deficiencies; they also suggested possible liver disease. And while John passed his cognitive exams, he was diagnosed with mild depression. But all he could tell the medical staff was how he had “been through so much worse”—and how he just wanted to go home, get away from the beeping and humming hospital, and be done with it.
Three minutes. All these facts and histories left me with one general, almost blanketed feeling: John was not going to live much longer. If John really wanted to go home, if there was really some way in which we could do right by him, we had to act now.
I was sitting face-to-face with the man. It was as if his tired, tumultuous medical history—like some solemn but unexpected musical score—was playing before me with a surprising timbre. One might have thought that this military man would want to fight, would need to fight—but the opposite was true. He was just plain tired. Tired of the hospital, tired of the doctors, tired of the medications, tired of the tubes in various orifices, natural and artificial. John just wanted to go home.
Ninety seconds. I had spent most of the conversation probing John’s mind, trying to find what mattered to him. I asked him what his understanding of his illness was. I asked him what concerns he had. I tried to uncover his goals, his priorities. Then: which outcomes were unacceptable? Which compromises seemed favorable? And ultimately, what did a good day look like?
Forty-five seconds. John had answered all my questions. Yet I realized that, for all my probing, I was still beating around the bush. John was probably not going to live much longer; and if we didn’t take initiative, he might live the rest of his life bouncing in and out of hospitals—a prospect he abhorred.
But how could I ensure that John wouldn’t return to the hospital for treatment he didn’t want? Thirty seconds. The answer was simple, stupefying: an advanced directive. With John’s advanced age and complex medical history, he needed something to explicitly convey all that he had just told me. His concerns, his goals, what was unacceptable, what could be compromised: if these were written down, John would stand a markedly better shot of living—and yes, dying—on his own terms. So I spent the last half-minute of our conversation describing the advanced directive form, highlighting its purpose and importance. He seemed uncertain, suspicious at first. Was I telling him that he would die? But he soon realized that, in reality, this form was not about his death. It was about his life, and what he did and did not want if something were to happen to that life. I saw a spark of change flicker across his eyes, as he looked down at the form I had handed him.
Then time was up, and John—the 80-year-old war veteran, the man with pneumonia and cardiovascular disease—transformed into a young, presumably healthy woman, as the two of us chuckled at the change. But what had just transpired was not fiction—not quite, at least. What had transpired was the enactment of a timely, crucial endeavor for our modern healthcare system.
Since the start of the new year, I’ve been participating in a weekly seminar at Stanford’s medical school, focused on difficult conversations surrounding serious illness. My motivations are simple: as a future physician, I face countless difficult conversations ahead, many of which will reveal my profound incapacity to guide another human being through the sufferings that they, and not I, experience. That is—I will be incapable, if I don’t come prepared.
So I was excited for the seminar’s second session, held a few weeks ago, on advanced care directives. On their surface, advanced directives are quite simple: legal documents dictating how a person’s health care decisions should be made, if that person becomes incapable of making those decisions. But what sorts of decisions are specified? How does one fill this document out? And what role do healthcare professionals have in the process?
The questions pulsed through my mind as I spoke with “John”—a character, essentially, played by a classmate who had read a fictional case report before class. (The case, nonetheless, was based on actual patients.) My job, playing the role of medical professional, was to help John understand his situation, his fears, his desires. That’s it. Even though we had spent the first half of class learning about advanced directives—their benefits and shortfalls—I was under no agenda to push this document in his face. Or at least that’s what I thought.
When I actually got to speaking with John—portrayed in Oscar-worthy fashion—I realized that I could not separate his situation, his fears, his desires, from the value of an advanced directive. As many families already know, things become messy at the end of life. Questions abound about the intensity of treatment, the continuation or refusal of care, the proper setting for one’s last days. These questions can be difficult for patients themselves; even those who have plenty of time to think. Now imagine a family, deciding in a split second whether or not the medical team should resuscitate their 80-year-old grandfather (or whoever it may be), without any prior guidance. Or, think about someone bouncing between home and hospital for the last few months of their lives. Assuming they were cognizant enough to be aware of the situation, what would they think?
They might hate their last days. Or, they might want things that way. This is the exact problem: without advanced directives, we simply don’t know. So when I read through John’s case before class, and when I met the “real” person before me, I couldn’t get these documents off my mind.
But what are these documents? For all the largeness and complexity of life and death, advanced directives are rather simple. Though a wide variety of different forms exist, two components are almost always included: the Durable Power of Attorney for Health Care (DPAHC), and the “living will.” In the DPAHC section, one lists an individual (and alternates) to make one’s medical decisions in the scenario that one is no longer capable of doing so. The “living will” section complements the DPAHC, providing specific instructions for things like prolonging (or not prolonging) life, and when (if ever) pain-relieving medication should be withheld. There is usually room in this section for “other wishes”—for example, the wish that one never be intubated. In the form used for class (which is also the form used in Stanford Hospital), sections followed pertaining to organ donation, designation of a primary physician, and witness statements. The entire document was only 5 generously-spaced pages, and there was no jargon. In the first half of class, I filled out my own advanced directive in fifteen minutes.
The form is valuable and simple. But there are still problems to overcome. For one thing, a recent study found that only 37 percent of Americans currently have advanced directives. This is in spite of a resurgent national conversation on end-of-life care, and new Medicare reimbursement for physicians who provide advance-care counseling. And while older adults are more likely to have advanced directives (particularly those in hospice care), no demographic has even approached comprehensive advance-care planning. Americans with chronic illness, for instance, have a 38.2 percent advanced directive completion rate—compared to 32.7 percent in healthy individuals. As one physician told Reuters, “The fact that only a third of sick patients are expressing their end-of-life wishes means we’re in trouble.”
There is clearly some gap, some pitfall, which has stifled the full potential of advanced directives. And as I learned while talking to “John,” that pitfall sometimes sits right in the middle of the doctor’s office.
Even after a lecture on advanced directives, I had struggled to communicate the relevance of these documents to a tired and cynical man. (Even if he was, in reality, a driven young woman.) I found myself struggling with his worries: that this form would take away his independence, that he was signing up to die. But thankfully, these same worries provided a key entryway to John’s desires and values. For advanced directives are, in truth, a declaration of one’s independence. They can be changed or revoked at any time, and superseded by a patient’s spoken or written word. The DPAHC can be restricted to certain decisions, allowing the patient final say in others. If this hypothetical man was tired of the hospital, burdened by the strangeness and beeping of intensive medical care, the advanced directive was one way to reclaim control.
The five minutes of role-play ended with a debriefing between my classmate and I. We chuckled over our thespian shortcomings, and the awkward unnaturalness of the first few minutes. But the lessons learned were no joking matter. We were both future physicians, preparing to serve an aging population—most of which had not thoroughly planned for the end of life. One document was not going to solve this problem, but it was a good place to start. The implications were thus clear as the seminar ended and we waddled off to lunch. My classmates and I would have to understand these forms, understand how we might talk about them with patients of all ages and activity levels. We would have to understand the rhythms of inpatient and outpatient care—how and when one might talk to patients about these forms. But most of all we would have to understand people, their goals, their fears, and what matters to them.
We will have much longer than five minutes to prepare. But our duty is urgent, and we must learn to make our case.
Several years ago, MapQuest directed me on a 10-hour drive to visit my father in a Florida hospital. Complications from diabetes, including blindness, kidney failure, congestive heart failure, and a below-the-knee amputation, had taken their toll. This time my father, 69, was hospitalized for an infection of unknown origin that physicians could not name, despite their many attempts to grow cultures.
I did not know it at the time, but my father was dying.
Once I arrived at the hospital from Durham, North Carolina, I could hear his screams from the nurses’ station. “Never mind. I hear him,” I told the nurse whom I had just asked the location of my father’s room. “I’ll follow the sounds.”
That any patient would be left in so much pain that his screams could be heard down the hall was unacceptable to me. That this patient was my father, a man I had always known as a big, strong former football player – the kind of man other men didn’t dare cross (but who was also loving and gentle) – was difficult for me to process. Yet, here I was, being guided to his hospital room by the sound of his cries. Despite being a trained philosopher with an interest in bioethics, I had not yet begun to think about the ways in which racialized health disparities manifest even at the end of life. My father’s excruciatingly painful process of dying was but one example.
Gaps while living, gaps while dying
It is well documented that African-Americans experience excess mortality, or deaths beyond the expected mortality rate. However, even if disparities in the mortality rate for African-Americans were rectified tomorrow, the fact remains that we will all eventually die. And how we die matters.
According to a 2013 Pew Research survey, 72 percent of American adults have given at least some thought to their end of life wishes, with 37 percent of American adults having given their end of life wishes a “great deal of thought.” Some of these wishes include decisions about pain management, maintaining quality of life, and whether to continue aggressive medical treatment for terminal illness.
Additionally, research shows that people tasked with making treatment decisions for loved ones who cannot express their own wishes sometimes experience distress about watching their loved one suffer. Even months or years later, they wonder whether they made the “right” decision.
Black patients generally receive worse pain management in primary care environments and emergency rooms. Even black children are not treated for their pain to the extent that white children are. Some attribute this to false beliefs about biological differences between black and white patients, including the belief that black people have “thicker skin” and, therefore, do not experience as much pain as whites. These false beliefs lead to inaccurate pain assessments by physicians evaluating black patients and an unwillingness to take the pain complaints of black patients as seriously.
This disparity in black patients’ pain management continues even as black patients are dying. Families often want to ensure that their loved ones are as comfortable as possible once patients reach the point where death is near. Racialized gaps in pain management lead to a denial of humane comfort care that contributes to unnecessary suffering for black patients and their loved ones.
Inadequate pain management is but one aspect of the lower quality of care that black patients report in general that affects when and how black patients die. In December 2015, 57 year-old Barbara Dawson was arrested and forcibly removed from Calhoun Liberty Hospital near Tallahassee, Florida, after she refused to leave without further treatment. Although she had been evaluated in the hospital, she was discharged despite her continued complaints of difficulty breathing. Hospital personnel apparently assumed she was faking her symptoms and called police to arrest her for being disruptive. Dawson collapsed before she could be placed in the police cruiser and was returned to the hospital where she died an hour later from an undetected blood clot in her lungs.
Dawson may or may not have been at the end of life when she arrived at the hospital. However, hospital staff allowed her condition to deteriorate by not taking her complaints seriously. She died only feet away from people who could have, at minimum, eased her process of dying. The hospital was later fined US$45,000, and Dawson’s estate settled a lawsuit against the hospital for $200,000 in 2017.
Dawson’s experience is a dramatic and appalling case. Nevertheless, one groundbreaking study revealed that physicians generally interact less – both verbally and nonverbally – with black patients who are dying than with white patients who are dying. At the end of their lives, black patients do not receive the same comfort care, including eye contact and touch, from physicians that white patients do.
The U.S. health care system can improve care for all patients at the end of life. However, this system still denies black patients the kinds of interventions that white patients often take for granted. This denial contributes to more painful, horrific deaths of black patients and compounds the grief of their loved ones.
In my father’s case, even as part of me still hoped for a miracle, the thing I wanted most in the world was for him to be as comfortable as possible. That this did not happen despite my best efforts still haunts me when I think about the end of my father’s life.
The death of a child may be considered the worst trauma that any human can experience. Though it’s not a terribly common experience in the United States—about 10,000 children between the ages of 1 and 14 died in 2016—the horrific potential for childhood mortality looms large. While reassuring, the numbers also make plain why this one specific type of loss is so feared, so painful, and so stigmatized.
“The death of a child is considered the single worst stressor a person can go through,” says Deborah Carr, chair of the sociology department at Boston University. “Parents and fathers specifically feel responsible for the child’s wellbeing. And they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”
Although parents mourning the death of a child are, in many ways, experiencing classic grief responses— usual battery of psychological, biological, and social repercussions—there are many unique challenges. The trauma is often more intense, the memories and hopes harder to let go of. As such, the mourning process is longer and the potential for recurring or near constant trauma is far greater. “The death of a child brings with it a range of different and ongoing challenges for the individual and the family. Everyday questions such as ‘How many kids do you have?’ can trigger intense distress.” explains Fiona MacCullum, a professor at the University of Queensland. “Some people do find ways of living with the loss. Others struggle to find meaning in life.”
Psychological Impacts: How The Trauma Of Child Loss Harms The Psyche
Interestingly, very few studies have delved into the nightmare of the death of a child. Most of the research on the psychological response to death focuses on the loss of a spouse or a parent. Presumably this is in part because of the difficulty of finding subjects for study and also in the potential difficulty of recruiting participants in anything longitudinal.
“While there have been significant advances in our scientific understanding of grief, we have a long way to go,” MacCullum says.
That’s not to say we are without literature. One 2015 study of 2,512 bereaved adults (many of whom were mourning the loss of a child) found little or no evidence of depression in 68 percent of those surveyed shortly after the tragedy. About 11 percent initially suffered from depression but improved; roughly 7 percent had symptoms of depression before the loss, which continued unabated. For 13 percent of the bereaved, chronic grief and clinical depression kicked in only after their lives were turned upside down. (If those numbers seem low, it’s worth remembering that it is entirely possible to be deeply sad without being depressed.)
Unfortunately, the research suggests that psychological damage done by a child’s death often does not heal over time. One 2008 study found that even 18 years after the death of a child, bereaved parents reported “more depressive symptoms, poorer well-being, and more health problems and were more likely to have experienced a depressive episode and marital disruption.” While some parents did improve, “recovery from grief…was unrelated to the amount of time since the death.”
“The first year after losing a younger child, a parent is at an increased risk for suicide and everything from major depression to complicated grief,” Dr. Gail Saltz, a psychiatrist at the NY Presbyterian Hospital Weill-Cornell School of Medicine, told Fatherly. Complicated grief differs from expected, normal grief, in that “there are more intense symptoms, alternating with seemingly no symptoms—a numbness—which potentially impairs their ability to function.”
“A parent who grieves without any type of serious complications, such as suicidal thoughts or self-harm behaviors, would be the best-case scenario,” says Dr. Kirsten Fuller, a physician and clinical writer for the Center of Discovery treatment centers. “Worst-case scenarios would be experiencing suicidal tendencies, psychosis or developing a mental health disorder or an eating disorder.”
Biological Impacts: How The Death Of A Child Changes A Parent’s Body
The impacts of this tragedy are not solely psychological. In 2018, Frank Infurna and colleagues looked the general health and physical functioning of 461 parents who had lost children over the course of 13 years. “We did see some decline, followed by a general bounceback, or recovery, over time,” Infurna, who studies resilience to major stressors at Arizona State University, told Fatherly. Physical functioning was focused on one’s ability to complete various everyday tasks, and “we didn’t see much change in this,” Infurna recalls. But when he reviewed bereaved parents’ self-reports—whether they felt they got sick often, or whether they expected their health to improve or decline— he found poorer perceptions of health.
As with all major grief responses, the mental health trauma of losing a child can kick off physical symptoms, including stomach pains, muscle cramps, headaches, and even irritable bowel syndrome. A handful of studies have found more tenuous links between unresolved grief and immune disorders, cancer, and long-term genetic changes at the cellular level.
One surprising impact, often seen among parents mourning the loss of a child, is known as broken heart syndrome—a condition that presents oddly like a textbook heart attack. Symptoms include “crushing chest, pain, ST-segment elevation on electrocardiography, and elevated cardiac enzyme markers on lab results,” Fuller says, citing her previously written work on the subject. “As a reaction to emotional or physical stress, the body’s natural response is to release catecholamines, also known as stress hormones, that temporarily stun the heart muscle.”
Chronic stress can even impact how the brain functions, as long-term exposure to the stress hormone cortisol has been linked to the death of brain cells. And in a cruel twist of neurobiology, the regions of the brain responsible for grief processing, such as the posterior cingulate cortex, frontal cortex, and cerebellum, are also involved in regulating appetite and sleep. This may explain why grieving parents develop eating and sleeping disorders in the aftermath of the loss.
“There are many many studies that have looked at the ongoing health effects of high levels of chronic stress,” Saltz says. “And when you look at lists of stressful life events, this is at the top.”
Social Impacts: How Child Loss Strengthens (Or Ruins) Families
Major life stressors naturally take a toll on marriages. But divorce in the aftermath of a child’s death is not inevitable. “It’s really important to underscore that the death of a child is not going to ruin a marriage,” Carr says. “It generally makes a troubled marriage worse, and a strong marriage better.” When dealing with illness or addiction, spouses who disagreed over the best course of treatment are at particularly high risk. “If one spouse blames the other, or feels the other did something to hasten the death, that’s almost something that cannot be recovered from.”
There are also factors, beyond the couple’s control, which may sour or save the marriage. “Grief, trauma, and depression impact one’s ability to participate in all meaningful relationships,” Saltz says. “But I have seen couples where the opposite is the case. They become closer, they support each other. This is the only person who can really understand how you feel.”
Mothers and father who lose a child often must also contend with surviving siblings. Figuring out how to parent after losing a child is a unique challenge and here, too, experts agree that the outcomes for both the surviving children and parents largely depend on the state of the relationship before the trauma. The death can both bring a family together or tear it apart.
When dealing with terminally ill children, one particular risk is that other siblings may feel neglected, or find too many responsibilities foisted upon them while the parents shift their focus solely to the suffering child. A sick kid “is going to consistently get more attention, because they have to,” Carr says. “Sometimes the other children’s needs aren’t met, or they are treated like little adults, given more chores to do, or expected to provide emotional support to the parents.”
“That can be really troubling for them. Or it can be empowering, but difficult.”
Predictors: How Age Of The Child And Other Factors Impact The Trauma
A handful of studies have tried to pinpoint key factors that influence how well parents adjust in the aftermath of losing a child. One 2005 study found that the child’s age, the cause of death, and the number of remaining children was strongly linked to the levels of grief displayed by parents, while depression was linked to gender, religious affiliation, and whether the bereaved sought professional help. Subsequent studies have uncovered other predictors of lower grief responses: a strong sense of purpose in life and having had the opportunity to say goodbye.
“It depends on the psychological makeup of the parent, whether they have a history of mental illness, what coping skills and what social supports they have,” Saltz says. Outside factors can play a role, too. Suicide is often more difficult but a terminal disease can present recurring traumas over a long period of time. Saltz also suspects that gender may be part of the puzzle. “This will undoubtedly shift, but historically mothers have been the primary caretakers and more likely to have their identities wrapped up in being mothers,” he explains, adding that this may result in stronger responses among women who lose their children
One of the most salient predictors of trauma is the age of the child. Miscarriages and stillbirths are devastating, and made worse by the fact that the loss is often diminished by public perception that a fetus is not a fully-formed child. But “is it as devastating as the death of a child who has been alive for many years? Not to diminish this experience, but I think not,” Carr says.
Once a child is born, however, the script flips. Older adults who outlive their children generally have an easier time coping than parents who lose very young children. “The age of the child is really important, because it speaks to promise,” Carr says. When a young child dies, that promise dies with them: “the graduation, the grandbabies, the marriages—that’s lost, too.”
Nonetheless, even older adults may suffer intensely after the death of an adult son or daughter. “You can meet someone who is 75 who loses a 50-year-old child, and it’s still devastating,” Carr says. “There’s this belief in the natural order. A parent should die first. So even though age matters, older parents still are quite bereft. They’re just losing less of that long-term promise.”
Coping: How to Provide and Seek Comfort
After a child dies, those who are left behind may experience depression, biological and neurological changes, and a destabilization of the family and marriage. “If you’re in this situation, and it is impairing your ability to function, you need to seek treatment,” Saltz stresses. “Parents who fall into major depression will be unable to parent other children, or be in a marriage. Psychotherapy can be helpful and medication can too, at least in the short run.”
The best thing that friends and loved ones of bereaved parents can do is be present, available, and supportive. If the bereaved speaks of suicide, take them to an emergency room; if the situation is less dire, but the grief does not seem to abate over time, help them make an appointment to speak with a professional or attend a self-help group with other bereaved parents. Because even the most sensitive souls are seldom equipped to help parents cope with a loss of this magnitude—and no matter how hard you try, you’re unlikely to really understand.
That’s where a self-help group’s value really shines through. “The one thing that people who have lost a child hate hearing from others is ‘I know what you’re going through,’” Carr says. “They cannot possibly know.”
Jeremiah Lindemann’s “Celebrating Lost Loved Ones” project is a map of lost lives, a moving collection of crowd-sourced tributes from family and friends to those who have died of drug overdoses.
A digital mapmaker by training, Lindemann understands the geography of grief. More than a decade ago, he lost his kid brother to a drug overdose. Jameson Tanner Lindemann – J.T. to his family and friends – may have been introduced to opioids not by a dealer on the street, but by the well-intentioned dentist who removed his wisdom teeth.
J.T. died Sept. 13, 2007, shortly after finishing his second round of drug rehabilitation. He was 22.
Lindemann, seven years older than J.T., was away pursuing his career as his brother sank deeper into addiction. After J.T.’s death, Lindemann mourned but kept his feelings to himself. He couldn’t shake the stigma associated with drug abuse that might have led others to think of J.T.’s life as squandered in a desperate stew of escapism and dependency.
“It was nothing I wanted to talk about,” Lindemann says.
But as time passed, he became increasingly distressed at the opioid crisis’ mounting death toll, often ensnaring celebrities and other public figures. It became startlingly clear that many of the victims come from good homes and loving families, and that the vortex of addiction was sucking in individuals from every walk of life.
Around three years ago, Lindemann, a geographic information systems engineer for the digital mapmaking firm Esri, decided to tap into his expertise and create a crowd-sourced map to serve as an outlet for the scores of people who were grieving alone, reluctant to share their feelings with others who had experienced similar tragedies.
The goal: to celebrate the lives of those now gone.
Lindemann’s map enables loved ones to post pictures of absent friends and relatives, along with a brief tribute. Alongside the photo gallery is a map that displays where lives were lost, as well as a tally of the death toll in a given community. So far, more than 1,900 people have posted photos and shared stories of loved ones who have died, most of them in the United States, but a few in farther-flung locations such as England, Ireland, South Africa and Australia.
“These deaths are the tip of the iceberg,” Lindemann says. “There are so many more people now that are going through this. There’s got to be hope for them, too.”
Before long, Lindemann found himself overwhelmed by the number of people who regarded him as someone to whom they could pour out their feelings. He wanted to offer comfort, he says, but he didn’t know how. Plus, he had a day job, providing a variety of client support services for Esri.
A reprieve came when the National Safety Council offered to take over hosting the website as part of a comprehensive effort to curb opioid addiction and support those who have suffered losses from it.
“We realized that that in addition to pushing for legislative and policy changes – and changes around prescribing practices – we also needed to connect families so that they know they’re not alone,” council spokeswoman Maureen Vogel says. “That was one of the things that drew us to the map. There are stories behind each one of the data points.”
It is reminiscent, she says, of the AIDS Memorial Quilt, a massive folk-art memorial made up of festive, grave-sized panels commemorating those who have died from HIV/AIDS.
Among those with a spot on the opioid map is Salvatore Marchese, 26, whose courtship with drugs began at 13 when he began smoking marijuana.
“We never knew, because he played sports and had friends,” says his mother Patty DiRenzo, of Blackwood, New Jersey. But on the inside, something wasn’t right for Sal. “I guess he was probably medicating himself.”
Soon, DiRenzo says, Sal began taking pills: “When he couldn’t afford the pills, or steal them from us, he tried heroin.”
DiRenzo, a single mother, did everything she could to help her son, who was in and out of rehabilitation programs. In the end, heroin triumphed.
“He had been sober for 90 days,” DiRenzo says. “He probably thought he could use whatever amount he had been using previously, and overdosed.”
Marchese’s last months were a roller coaster of hope and despair. “In June 2010, he was in a very dark place, using very heavily, 20 to 30 bags of heroin a day. He called his sister from a parking lot and said, ‘I’m scared, I’m sick, I can’t live this way anymore,'” DiRenzo says. His sister took Sal to a local emergency room to flush the drugs out of his system. The next day, after a mad scramble to find an available bed, he was admitted into a treatment facility. Seventeen days into the program, he was released.
“He cried,” DiRenzo says, “‘I’m not ready to come home.'”
That summer, Sal got into an intensive outpatient program. He got a job working for a heating, air conditioning and ventilation company. “He started looking like himself again,” DiRenzo says. “His face looked healthy, he was healthy. We had a great summer with him.”
Then, on the night of Sept. 22, Sal didn’t come home. “It was devastating to me,” DiRenzo says. “What happened when he walked out that door? Did he hear a song on the radio? Did he go to Wawa to get coffee and meet someone he knew?
“When the police knocked on my door, I couldn’t believe what had happened,” she says. “They woke me up at 2:30 in the morning. My daughter said, ‘Oh, crap, the police are here.’ We thought he’d been arrested. Now I’d give anything for that news.”
Sal is survived by his mother, sister, longtime girlfriend and a 9-year-old son, also named Sal, who lives with his mother in his grandmother’s house.
“When I saw Jeremiah’s map, “I said, ‘Oh my God, it’s amazing.’ I can look at the other pictures and know I’m not alone. And Sal wasn’t alone. There are other people going through it,” DiRenzo says. “My son was a beautiful person, and so are all the other people’s children who are struggling with this disease.”
“Sal gave us one of the most precious gifts that anyone could give, his beautiful son. Baby Sal is a piece of his dad that will continue to shine his light and give his love to everyone around him, for the rest of his life.”
The right reader of a good poem can tell the moment it strikes him that he has taken a mortal wound — that he will never get over it.
By Ken Trainor
There should be a national day of mourning when our best and most loved poets die. But most of those poets probably wouldn’t want that. Mary Oliver, who died on Jan. 17, was one of them. But she would probably approve of a national day of reading poetry in her honor, so let’s make that day today.
Oliver never took life for granted. She celebrated the daily discipline of paying attention to the world around us, which is essential to conscious living.
For our national day of reading Mary Oliver, I’ve collected some of my favorite passages.
I dedicate them to Joanne Cella-Easton, friend and kindred spirit, who died much too young on Jan. 9.
I go down to the shore in the morning / and depending on the hour the waves / are rolling in or moving out, / and I say, oh, I am miserable, / what shall — / what shall I do? And the sea says / in its lovely voice: / Excuse me, I have work to do.
“I Go Down to the Shore” A Thousand Mornings
Mary Oliver was very good at asking challenging questions in her poems, such as this one from “Have You Ever Tried to Enter the Long Black Branches?”
Listen, are you breathing just a little, and calling it a life?
One of her most popular poems focuses on discerning where we stand in relation to the world:
Whoever you are, no matter how lonely, / the world offers itself to your imagination, / calls to you like the wild geese, harsh and exciting — / over and over announcing your place / in the family of things.
from “Wild Geese” New and Selected Poems, Vol. 1
This is from my favorite Oliver poem — and the most meaningful at a crucial point in my own journey:
But little by little, / as you left their voices behind, / the stars began to burn / through the sheets of clouds, / and there was a new voice / which you slowly / recognized as your own, / that kept you company / as you strode deeper and deeper / into the world, / determined to do / the only thing you could do — / determined to save / the only life you could save.
from “The Journey” New and Selected Poems, Vol. 1
I quoted the following lines in my mother’s eulogy in 2015:
To live in this world / you must be able / to do three things: / to love what is mortal; / to hold it / against your bones knowing / your own life depends on it; / and, when the time comes to let it go, / to let it go.
from “In Blackwater Woods” New and Selected Poems, Vol. 1
She let go of the love of her life, Molly Malone Cook, who died in 2005. Here is Oliver’s prose poem on falling in love:
Listen to me. Lift the oars from the water, let your arms rest, and your heart, and heart’s little intelligence, and listen to me. There is life without love. It is not worth a bent penny, or a scuffed shoe. It is not worth the body of a dead dog nine days unburied. When you hear, a mile away and still out of sight, the churn of the water as it begins to swirl and roil, fretting around the sharp rocks — when you hear that unmistakable pounding — when you feel the mist on your mouth and sense ahead the embattlement, the long falls plunging and steaming — then row, row for your life toward it.
from “West Wind #2” New and Selected Poems, Vol. 2
More challenging questions to keep you awake at night Tell me, what else should I have done? / Doesn’t everything die at last, and too soon? / Tell me, what is it you plan to do / with your one wild and precious life?
from “The Summer Day” New and Selected Poems, Vol. 1
Mary Oliver considered the end with some frequency in her work. When she died last month at the age of 83, I hope she realized she had, indeed, made something of her life.
When it’s over, I want to say: all my life / I was a bride married to amazement. / I was the bridegroom, taking the world into my arms. / When it’s over, I don’t want to wonder / if I have made of my life something particular, and real. / I don’t want to find myself sighing and frightened, / or full of argument. / I don’t want to end up simply having visited this world.
from “When Death Comes” New and Selected Poems, Vol. 1
And she certainly did more than visit the world:
The little sparrow / with the pink beak / calls out, over and over, so simply — not to me / but to the whole world. All afternoon / I grow wiser, listening to him, / soft, small, nameless fellow at the top of some weed, / enjoying his life. If you can sing, do it. If not, / even silence can feel, to the world, like happiness, / like praise, / from the pool of shade you have found beside the everlasting.
from “Just Lying on the Grass at Blackwater”
New and Selected Poems, Vol. 2
“Poetry,” Mary Oliver wrote in A Poetry Handbook, “is a life-cherishing force. For poems are not words, after all, but fires for the cold, ropes let down to the lost, something as necessary as bread in the pockets of the hungry. Yes indeed.”
If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.
Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.
From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.
Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.
“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.
John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).
He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”
Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.
One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.
There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.
“It was a profound experience for me. I realized what a good death could be.”