A Better Journey to the Final Exit
Modern medicine now lets us linger longer in illness, but still doesn't help prepare us for death.
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By AMY FINNERTY
Let's start with the bad news: We're all going to die. Through page after page of "Happier Endings," Erica Brown asks us to dwell on this appalling fact, laid bare in Psalm 55: "My heart is convulsed within me; terrors of death assail me. . . . I am clothed in horror."
Happier Endings
By Erica Brown
Simon & Schuster, 340 pages, $26
Simon & Schuster, 340 pages, $26
Tim Pannell/Corbis
Ms. Brown believes that ritual, and meaningful conversation with friends, family and other counselors can help us to "leverage the terror" of death into transcendence. Departing slightly from Elisabeth Kübler-Ross's axiomatic five stages of dying—denial, anger, bargaining, depression and acceptance—the author upgrades acceptance to "inspiration." She argues that even joy can be salvaged from death—our own or that of a loved one—if we live fully while accepting death's inevitability and view grief as a profound extension of love.
Not surprisingly, given that Ms. Brown is a Jewish religious teacher, she thinks faith helps. Religious communities of all kinds "have a way of stepping in to do death" for the grieving, "pushing us forward into the abyss of pain with a safety net of company and highly choreographed behaviors." For those not tethered to religion, death can be "a surreal slap," an "unimaginable walk through a really bad movie."
Even leaving faith aside, Ms. Brown argues, we are so attached to individualism and personal autonomy these days that we deny ourselves the benefits of "long-standing, communal participation in rituals." For the grief-stricken, it is true, there are now antidepressants, but the help they offer may be limited. "It is well known," Ms. Brown writes, "that people who medicate themselves have a harder time recovering. If you don't confront the pain fully it is harder to get on the other side of it."
In her "meditation on life and death," as the book's subtitle has it, Ms. Brown includes research about benign, fear-dispelling near-death experiences, but it is her attention to the nitty-gritty details of mortality that makes her book unexpectedly cathartic. While focusing mostly on Judaism and the beauty of its practices—asking forgiveness of the deceased, prescribing limited mourning so that survivors are coaxed out of seclusion—she explores other traditions. She introduces us to the concept of bardo, Buddhism's transitional stage between the death of the body and the rebirth of the mind. We learn that the son of a deceased Hindu lights the funeral pyre and then uses a sharp instrument to break his parent's skull, releasing the soul; that angels question the deceased Muslim and accompany him to heaven; that in Japan it is common for families to sit up with the body of a deceased relative all night before the cremation. All this cultural and forensic detail in itself helps to render the bad news of inevitable death a little less burdensome, by reminding us that we share it with all of humanity.
In the Kingdom of the Sick
By Laurie Edwards
Walker, 243 pages, $26
Walker, 243 pages, $26
Laurie Edwards, a science writer who suffers from chronic illnesses, seeks to bridge a communication gap—between society and the chronically ill. "In the Kingdom of the Sick" offers an informative primer on chronic illness in general but lingers over confounding, controversial maladies such as chronic fatigue syndrome and chronic Lyme disease.
After World War II, Ms. Edwards notes, major advances in antibiotic cures and vaccines, as well as in surgery and anesthesia, led to a sense of invincibility in our battle against disease, but euphoria gave way to an alarming shift: The many people who "did not die or become crippled and incapacitated from infectious disease" and other hitherto dire illnesses lived long enough to acquire chronic conditions. She is referring to arthritis, lupus, multiple sclerosis, Type 1 diabetes, Crohn's disease, colitis "and thousands of other diseases" that "are treatable but not curable." Almost half of Americans, she says, will at some point live with one or more of these illnesses.
Gender, Ms. Edward notes, is an "important variable in the chronic illness experience" and in the way in which chronic illness is regarded. More females than males manifest the symptoms of chronic and autoimmune illness, and we generally cling to "deeply ingrained ideas about women as unreliable narrators of their pain and symptoms." Chronic fatigue syndrome, or CFS, is a case in point.
In the late 1970s and early 1980s, people with disabilities, AIDS and cancer were beginning to benefit from activism, legislation, new drugs and new therapies. At the same time, a mysterious flu-like illness began sending patients to doctor's offices around the country. These patients were crippled with fatigue and other symptoms, including sore throats, headaches, memory problems and muscle pain. But in the shadow of AIDS' catastrophic toll, there was little interest "in a vague set of complaints." Chronic fatigue syndrome was "derisively called 'yuppie flu,' " Ms. Edwards reminds us, though it is not in the least class-specific: It cuts across race and income and occurs most often in people age 40-59; women are four times as likely as men to develop the disorder.
Of course, CFS is only one of a range of illnesses whose sufferers are subjected to routine skepticism. One researcher, trying to capture society's dismissive attitude, calls these sufferers "the Tired Girls." They are, Ms. Edwards says, "sick with invisible illnesses (chronic fatigue, fibromyalgia, migraines) that in many cases have elicited doubt from health-care providers." They also represent "so much that society disdains: weakness, exhaustion, dependence, unreliability and the inability to get better."
Through interviews with patients and doctors, Ms. Edwards unpacks such questions as whether stress, depression and anxiety (fueled by purported medical information on the Internet) create psychosomatic patients who merely believe they have certain illnesses or whether their stress and depression might result from the isolation and anxiety of having legitimate symptoms dismissed. We meet Jennifer, who was a Middlebury College student working as a summer camp counselor when she was bitten by a tick and contracted Lyme disease, an illness that affects some 250,000 Americans. She was seriously ill for years before she was correctly diagnosed and treated. Lyme disease, Ms. Edward says, often "pits evidence-based medicine and quantifiable data against clinical observations and patient histories."
Ms. Edwards is unstintingly sympathetic to her patient-subjects. She steers us to research that shows sex-based differences in symptoms and treatment. She also stands back to regard our "increasingly consumerist culture where both drugs and the conditions they treat are marketable commodities," which can empower consumer-patients but also mislead them or heighten their anxiety. She laments the fact that stem-cell research, which holds great promise for treating chronic illness, has become "entrenched in red state-blue state politics." She blames neither callous doctors nor the "upper-middle-class female patient with fibromyagia who stands as a symbol of psychosomatic anxiety" for the understanding gap between society and the chronically ill. If patients felt more supported and doctors "less besieged" in their first encounters in the doctor's office, Ms. Edward says, physician-patient collaboration could narrow the gulf between patient and healer.
How to Be a Friend to a Friend Who's Sick
By Letty Cottin Pogrebin
PublicAffairs, 283 pages, $24.99
PublicAffairs, 283 pages, $24.99
Another kind of communication chasm, the one between the ill and those who care about them, is addressed with sympathy and humor in Letty Cottin Pogrebin's "How to Be a Friend to a Friend Who's Sick," a guide to what might be called "compassion etiquette." The book will be especially indispensable to the author's 70-and-older cohort who are living longer but, she confides, having trouble keeping track of who has got what at any given time. Ms. Pogrebin pitches a big tent, counting both the terminally ill and the temporarily laid up among the friends who deserve compassion properly expressed. She even includes her friends who were Madoff-ed and left sick with worry over the loss of their life savings.
While being treated for breast cancer in New York, Ms. Pogrebin, an author and journalist, decided to use her long spells in waiting rooms to interview other patients about what they wanted and didn't want in the way of TLC. She herself has been on the receiving end of faux pas, such as when she emailed a few close friends in confidence about her cancer and soon discovered that the news had "metastasized," forcing her to issue a tactful gag order. Hospital and home visits, a friend's dementia, caring for caregivers and writing condolence notes—all can be social land mines: What to say? How to avoid being intrusive? It's an imperfect science.
Some of Ms. Pogrebin's examples of what not to say to the newly diagnosed—"Wow!! You must have really bad karma"—are glaringly insensitive. But "empty eloquence" can also be an affront. Platitudes, including "everything happens for a reason" and "you need to be strong for your kids," are often unwelcome. Gifts are also tricky: The author offers alternatives to insipid flowers and balloons, including offers of babysitting, a joint of Acapulco gold for someone undergoing chemo, or, if the friend is strapped, good old-fashioned cash. In essence, the author believes, it is our job to ask: What is helpful and what isn't? And then to follow through.
Sometimes what is most helpful is to convey what has been learned from one's own experience. When the son of the singer Judy Collins committed suicide, the comedian Joan Rivers, whose husband had taken his own life, called her "immediately and said 'there are no guilts in suicide. Guilt is playing God. Guilt is imagining we're so powerful we could have stopped it.'" Ms. Pogrebin rightly credits Ms. Rivers as one of those friends who, in the face of calamity, "got it right."
—Ms. Finnerty is a writer in Brooklyn, N.Y.
A version of this article appeared April 6, 2013, on page C9 in the U.S. edition of The Wall Street Journal, with the headline: A Better Journey to the Final Exit.
