How to Be a Friend to a Friend Who's Sick

If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

—EMILY DICKINSON

PREFACE

WHO AM I AND
WHY THIS BOOK

I’M NOT A DOCTOR, SOCIAL WORKER, PSYCHOLOGIST, religious leader, or grief counselor—so who am I to write this book? Very simply, I’m someone who has—whoops, who had—cancer. I’m also a woman with lots of friends and a writer who became fascinated by the disconnect between how people treat sick people and how sick people wish to be treated. To illuminate this phenomenon I started with my firsthand experience, buttressed it with some research, and conducted nearly eighty in-depth interviews with other sick people, many of them my fellow patients at the Memorial Sloan-Kettering Cancer Center. I’ve distilled everything into a book that I know can make you a better friend to a friend who’s sick. Before the movie begins, let’s cut to the chase. Here’s what you’re going to learn in these pages: empathy translated into action equals kindness. It’s a foolproof formula; all you need is the appropriate vehicle for your best impulses and the commitment to stick it out over the long haul. I’m sure you already know how to “be friends” when it means catching up over lunch, sitting side by side at a ball game, or texting each other about a movie. But when a pal or loved one falters physically or mentally—when they’re hobbled or hurting, when your role in the relationship is no longer easy or obvious, when your interests and exchanges are not entirely reciprocal, and your once-easy conversation tips jarringly toward matters of crisis and pain—you may have to find new ways of being together, new means for you to be helpful, and new words to keep things real.

My sensitivity to these issues was sharply honed when I observed my friends’ responses to me after I was diagnosed. But the most valuable lessons in this book came from my fellow patients who comprise the majority of those I interviewed for this book. Though strangers to one another, we shared a commonality of crisis that inspired mutual revelation, a situational intimacy that somehow entitled me to ask astonishingly personal questions and get remarkably candid answers. Like seatmates on a long plane trip, we had nothing to lose by opening up to each other and letting the truth leak out—a truth with no consequences because we knew it could be recorked when we parted company, never to see one another again.

Entering other people’s truth, I learned that illness is friendship’s proving ground, the uncharted territory where one’s actions may be the least sure-footed but also the most indelible; that illness tests old friendships, gives rise to new ones, changes the dynamics of a relationship, causes a shift in the power balance, a reversal of roles, and assorted weird behaviors; that in the presence of a sick friend, fragile folks can get unhinged and Type A personalities turn manic in order to compensate for their impotence; and that hale fellows can become insufferably paternalistic, and shy people suddenly wax sanctimonious.

Other patterns took shape in these testimonies: not all sick people want the same amount or kind of attention. Women and men tend to “do” friendship and illness differently. A joke amusing to one patient can be offensive to another. A squeeze of the hand can feel comforting when one friend does it, patronizing when the hand belongs to someone else. Emotions stirred by illness can be overwhelming, a friend’s symptoms alienating, medical jargon intimidating. Someone else’s health crisis can trigger memories of our own past ordeals or those of a person we loved. It’s not uncommon for people to freeze or panic in the company of misery, botch gestures that were meant to ease, attempt to problem-solve when we have no idea what we’re talking about, say the wrong thing, talk too much, fidget in the sick room, sit too close to the patient or stand too far away. Some of us don’t visit our sick friends at all. Others visit, overstay, and make things worse. Some bring an inappropriate gift or arrive empty handed, only to be mortified when they find the sickroom stuffed with bouquets and balloons.

The stories I collected from others helped me understand my own reactions and fueled my determination to be a better friend to my ailing friends. Among other lessons, I learned that it’s not enough to be a good-hearted person if you’re oblivious to the pain in someone’s eyes; that friendship can nourish, help, and heal but also disappoint and suffocate. With every interview I marveled at how thin and permeable is the membrane between good intentions and bad behavior, how human it is to be both strong and vulnerable, and how people process the sickness, stress, and sorrow of their friends in many different ways.

My interviewees’ generosity, their willingness to spend time talking to me, to revisit painful memories and share their often hard-won advice has been the making of this book. But fair warning: some of their tips may seem platitudinous or self-evident to you (or maybe just to me). I’ve included them nonetheless because they were repeated often enough to suggest that they’re not so obvious or intuitive to everyone else. If 5 or 10 percent of the advice makes you wince, I beg your indulgence on behalf of those readers who need a little extra help being helpful.

Likewise, some advice will be irrelevant to what’s happening in your life at the moment. You may not have any relatives with prostate cancer, friends who are slipping into dementia, or whose kids are terminally ill. Remember that this book does not have to be read from cover to cover; it can be dipped into as needed. You can skim the chapter titles, hone in on what you need to know right now, and set the book aside for future reference when those other awful situations eventually crop up. And trust me, they will.

This book couldn’t have been written a generation ago when many sick people—especially those with cancer, invisible diseases like diabetes or heart disease, and mental disorders—were as closeted as many gay people were at that time and as reluctant to divulge their condition for fear of being penalized or stigmatized for it. In the case of ailments and infirmities, the zeitgeist changed radically with the passage of the Americans with Disabilities Act in 1990 and the explosion of tell-all talk shows, Internet medical sites, and online chat rooms tailored to specific afflictions.

Also crucial to the changing environment is the fact that so many well-known people have gone public with their diseases (most on their own initiative, though some involuntarily). Think Elizabeth Edwards, Ann Romney, Sheryl Crow, Christina Applegate, and Betty Ford (breast cancer); Kitty Dukakis, Dennis Quaid, Bob Dylan, Lindsay Lohan (addiction); Michael J. Fox, Muhammad Ali, Billy Graham, Johnny Cash (Parkinson’s); Michael Douglas (throat cancer); Steve Jobs (pancreatic cancer); Barbara Walters and Rosie O’Donnell (heart disease); Princess Diana (eating disorder); Sheryl Crow (brain tumor); Glen Campbell, Loretta Young, Iris Murdoch, Ronald Reagan or, rather, Nancy on his behalf (Alzheimer’s); Dick Clark, Gerald Ford, Della Reese, Ted Williams, and Clarence Clemons of the E Street Band (stroke); Catherine Zeta-Jones, Kurt Cobain, Britney Spears, Mariette Hartley (bipolar disorder); Harry Belafonte, Robert De Niro, Colin Powell, John Kerry, and Rudy Giuliani (prostate cancer); Lance Armstrong (testicular cancer); Earvin “Magic” Johnson, Rock Hudson, Anthony Perkins, former Playboy Playmate Rebekka Armstrong, and New York State Senator Thomas Duane (HIV or AIDS); Richard Pryor, Montel Williams, Joan Didion (multiple sclerosis); Neil Young, Elton John, Margot Hemingway, and Danny Glover (epilepsy); Drew Barrymore, Elton John, Steven Tyler, Ben Affleck, Texas Governor Ann Richards, Stephen King, Anthony Hopkins, and, again, Betty Ford (alcoholism), to name just a few.

Although we might decry “sick celebrity” stories as carrion for pop culture vultures, the mainstreaming of headliners’ illnesses produces the salutary by-product of a more informed public. Ordinary people struggling with similar issues feel less isolated and more normalized for having a problem that Diana, De Niro, or Didion shares, and the rest of us know a lot more than we otherwise would about the causes, symptoms, and treatment of various ailments and diseases.

If I had to get cancer, I couldn’t have picked a better era in which to do it. Not only did the web provide copious answers to my most arcane questions, but I never had to hide what I had. (In some cases health insurance discrimination and workplace bias do require people to conceal their conditions, but that’s another story.) As soon as I was diagnosed, I “outed” myself. Unashamed, I was open to advice and able to connect with other women in the same boat. Best of all, I felt free to share my ups and downs with my friends, fellow patients, and now with you.

PROLOGUE

EVERYTHING I KNOW
I LEARNED IN THE WAITING ROOM

ANONYMOUS WROTE THE FIRST FIVE LINES; I added the sixth because getting cancer put me in treatment, which put me in the waiting room at the Memorial Sloan-Kettering Cancer Center (MSK) every day for six weeks, which put me in proximity with many other patients, who allowed me to do the interviews that put flesh on the bones of this book. Here’s how it all began.

September 28, 2009. Yom Kippur, the Day of Atonement. I spend hours in synagogue, doing what Jews are supposed to do: I resolve to be a better person in the New Year, which, according to the Hebrew calendar is 5770.

September 29. I start the year by going in for my annual mammogram. No big deal: routine checkup, you know the drill. After flattening your breasts like a couple of paninis, the technician usually takes your films to the radiologist, returns five minutes later, and says, “You’re fine. Get dressed.” This time the technician says the radiologist, Dr. Julie Mitnick, needs more X-rays, a sonogram or two or four. The technician goes through her paces then sends me back to the waiting room, where I sit cocooned in my hospital gown and wait. Twenty minutes go by. Half an hour. Finally, Dr. Mitnick herself comes out and beckons me to follow her to a small private consulting room. I already know what she’s going to say.

Betty Rollin titled her groundbreaking breast cancer memoir First, You Cry, but when I hear “suspicious mass,” I don’t shed a tear; I go numb. A nurse asks if I want to call my husband. Bert races over from his office in record time and accompanies me from one overly air conditioned clinical room to another, where a CT-scan and MRI confirm the presence of a tumor in the upper quadrant of my right breast.

My calendar chronicles the ensuing events in a terse chronology:

September 30. Biopsy. Tumor definitely malignant.

October 2. MRI. Establishes exact location.

October 19. Meeting with breast surgeon.

October 22. X-rays. Blood work.

October 28. CT Scan.

October 29. Injection of nuclear dyes (to map tumor). Scan. Tattoo marks breast for eventual X-ray beams and positioning of radiation treatments.

October 30. Lumpectomy surgery.

During one of my delusional postsurgical reveries a scrap irony zips by in headline form: “Feminist Activist Stricken with Quintessentially Female Disease.” Just as construction workers get mesothelioma from overexposure to asbestos, it seems entirely possible that I contracted breast cancer from overexposure to women’s troubles. After all, I’d spent four decades immersed in the thick of the women’s movement as a founding editor of Ms. magazine, the bible of mainstream American feminism. I was a veteran of a feminist consciousness-raising group that met once a week for four years. I was the cofounder of more than a dozen women’s organizations, commissions, and dialogue groups. I’d been privy to the most searing particularities of male sexism and female pain and heard countless stories about the indignities and abuse visited upon women by their partners, spouses, fathers, brothers, uncles, bosses, teachers, and classmates. As an activist, I’d marched, demonstrated, picketed, petitioned, sat in, and rabble roused on behalf of gender equality and women’s rights. As a journalist, I’d covered prochoice conferences and rape speak-outs, written hundreds of articles about the exploitation and intimidation of women, pregnancy discrimination, domestic violence, sex trafficking, sex stereotypes, women in poverty, gender bias in schools, sexual harassment on the job, and male supremacy on the home front.

No surprise, then, that I become convinced, in my semi-anesthetized state, that my body had absorbed all that female angst and compacted it into the tumor whose excision would eradicate the misery afflicting womankind. This hi-falutin’, self-referential fantasy was overtaken, when I came to, by a stabbing pain under my arm and the realization that, though the tumor had been removed from my breast, sexism’s sins were still intact.

January 2, 2010. Begin radiation.

Okay, so I got diagnosed the day after the Jewish New Year, and I’m starting my journey back to health the day after the secular New Year. Nice frame, but try as I may, I find no mystical meaning in it. All I know is that when I leave my apartment on that cold winter morning and walk across Central Park to MSK for my first treatment, I’m revved up to get zapped in the breast and stunned to find that the X-ray monster and its operatives aren’t ready for me. Don’t they know how nervous I am, how desperate I am to get this over with, how fragile, skittish, and scared I feel?

The first day my wait is forty-five minutes. Often I wait more than an hour for my treatment room to open up. The radiation itself takes just a few minutes, but the time I spend beforehand in the waiting room and the time it takes the technicians to set up the machines properly add uncountable hours to the process. Once I realize that great chunks of my life are about to coagulate into shapeless sludge within the walls of MSK, I stop wearing a watch. I train myself to ignore the A.M. and P.M. line on my BlackBerry screen, the clock on the wall, the watches on other people’s wrists. The least I can do is spare myself the quantification of time slipping away—another loss.

Like my fellow wait-ers, I sorta-kinda keep track of who arrives in what order so that none of us gets taken out of turn. I gaze out the window at the schoolyard below. I drink too many cups of coffee, check my e-mail, study the changing cast of characters, the receptionists’ family photos, the Christmas cards still taped to the walls, the communal tissue box set within easy reach to accommodate our sniffles and tears. Before long the waiting room at MSK is as familiar to me as my apartment.

It angers me that sick people have to wait for everything and everybody—doctors, nurses, callbacks, lab results, prescriptions, medications, technicians, treatment rooms. If illness is the embodiment of powerlessness, which, believe me, is true, then waiting is its temporal incarnation. Waiting is time’s carnivore; it eats away your life. It’s the enemy of sublimation, the ally of anxiety and fear. It mires the mind in a stew of what-ifs, fatality statistics, the perils of a foreshortened future. I wait for my name to be called; when it is, I proceed to the women’s locker room, strip to the waist, don a hospital gown, and schlep myself to another waiting room where I wait for my treatment chamber to become available. Once inside this holy sanctum I wait for the technicians to set up the machinery that must be tilted, tuned, and calibrated to the precise location of my former tumor.

“Why is nothing ready on time?”

“Sorry, Ma’am.”

“How come no one’s available when they’re supposed to be?”

“Can’t be helped.”

“Any idea when they’ll get to me?”

“Nope, you’ll just have to wait!”

Which is exactly what I do every day for six weeks because I have no choice, no control whatsoever, and I know it. Were I to complain, I’m afraid the technicians who are in control might retaliate by making me wait even longer for the zapper that’s supposed to burn my chest but save my life. Once, when I log nearly three hours in a chair in the waiting room, I mouth off a little to a passing technician. With fatigue in his voice he explains that the schedule for my treatment room first got bollixed when they had to wait for a patient who’d recently had a stem cell transplant to stop vomiting long enough to lie down under the machine. The patient after him, a three-year-old with brain cancer, was so panicky and fought the technician so frantically that she finally had to be anesthetized to stop her from squirming. Needless to say I’m ashamed of myself and quickly apologize for my impatience. That’s the last time I grumble. How dare I complain when others are going through so much worse?

Not just my type of diagnosis but my radiation experience makes me one of the lucky ones: though serious burns and debilitating fatigue are common hazards of these treatments, mine are painless. My skin tans rather than fries, and I feel no lag in energy. Still, in six weeks I smile only once, when Lenny, the technician with the thin mustache and the plummy British accent, greets me with a courtly bow, gestures toward the long metal slab on which I’m to stretch out under the X-ray monster, and says, “Good day, Madam, your table is waiting.”

This particular morning I awake to a howling blizzard. Having committed myself to trekking to the hospital on foot every day for fitness’s sake regardless of the weather, I bundle up, pull on my snow boots, and set out across Central Park. The serpentine paths are blanketed in white, and my footprints, the first to despoil the snow, leave deep marks.

I’m reminded of my surgery of two months ago and how the scars from the lumpectomy and node excision have left their marks on this phase of my life just as deeply as the jagged belly-button-to-pubic-bone incision from my emergency C-section marked me decades ago when I delivered full-term twins. The scars on women’s bodies tell the stories of our lives. Men show off their battle scars. How odd that we hide ours when we should be flaunting them as proof of our heroism.