April 9, 2013 at 6:17 PM ET
Letty Cottin Pogrebin clears the air with wit, warmth and insight on the delicate travails of dealing with a loved one who is ill. In 'How to Be a Friend to a Friend Who's Sick,' Pogrebin shares her own experience with cancer to point the way to great empathy. Here's an excerpt.
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?”
“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.
Thick flakes swirl in the wind like goose feathers unloosed from a gigantic pillow. I cross Fifth Avenue and head east on Sixty-Seventh Street, mini-icicles dancing on the tips of my eyelashes, snow melting between my neck and the collar of my parka. Soaked and shivering, I finally push through the doors of MSK, telling myself that if I come down with pneumonia, at least I’ll be near hundreds of doctors.
Then again, I’ll probably have to wait for one of them to see me.
The technicians stay the same, the routine stays the same, the out-of-date magazines stay the same; only the patients in the waiting room keep changing. This morning the room is a beehive of activity, people stomping caked snow off their galoshes, shaking their wet coats like dogs after a swim, spreading their sodden gloves on the radiator grill to dry—and talking to each other! I’m stunned to find our normally leaden waiting room abuzz with convivial camaraderie and light-hearted banter. The snowstorm has broken the ice. Rather than hide behind their newspapers, my colleagues are trading stories about how they got here, where they started out, what weather-related hardships they endured en route. A woman with wind-burned cheeks is grousing about the neighbor who didn’t show up that morning as promised.
“She said she was gonna take the subway with me and keep me company in the waiting room. I don’t need company, y’know. I just need to count on someone when she says she’s gonna do something.”
“It’s about being reliable,” says the thin woman in rimless glasses, casting a soft smile at the teenager beside her, probably a grandson. The man in a Mets hoodie nods, and the young couple lock eyes in a way that suggests that they too have been let down by someone they trusted.
My mind slaloms down a mountain of recent memories, past all the friends who, in the current parlance, “have been there for me” every day in every way. It skids to a stop at the one friend who hasn’t—a close pal who, after I told her I had cancer, never called or wrote or asked how I was, though we often found ourselves in the same room together. I wonder how many other people in my situation have experienced such wild extremes of fealty and neglect. I think about the people I had expected to be the most supportive and the people who actually were as well as how hard it was to forecast who would be which.
I ponder what made me allow some friends to get in close while keeping others at a distance. I wonder what other sick people do to protect themselves against annoying friends and what sort of friends make them feel comfortable and safe. I Google “friendship and illness” on my BlackBerry: 7 million results. A scroll through the first couple hundred suggests that most entries seem to focus on mental illness and New Age philosophy. A search of Amazon.com yields 117 titles, mostly kids’ books (My Friend Has Diabetes, My Friend Has Epilepsy), teen novels about the impact of illness on adolescent social life, and for the rest of us a slew of spiritual guides, sorrowful but uplifting fiction, and memoirs by people who helped a friend through a crisis. Several sound interesting, but none directly address the questions that have captured my interest: What’s the best way to be a friend to a friend who’s sick? What happens when illness becomes the third party in a relationship? Does everyone agonize as I did about whom to tell and how much to divulge? Do life-threatening illnesses deepen people’s desire for intimacy or make them retreat into themselves? Are others as persnickety as I am about protecting their privacy? How do they deal with friends who are insensitive or say stupid things? Are other sick people as eager as I am to not need help? Do their friends’ ministrations sometimes make them feel burdened, and if so, have they figured out how, without sounding mean or ungrateful, to ask an overbearing pal to back off? Once or twice I actually felt like shouting, “Thank you for caring. Now leave me alone.” Didn’t mean it literally—didn’t want to be ignored or abandoned—I just wanted my friends to dial back a bit. Is there a nice way to tell someone what you want without sounding like an ungrateful bitch? Even when there’s something I need done, why, when my friends ask what they can do for me, do I always say, “Nothing?” What’s that about?
A new idea begins unspooling in my head. Rather than bewail my daily incarceration in the waiting room, I could write a book on the subject of friendship and illness that would answer all those questions. I’d already established a toehold on the general topic of friendship twenty-five years ago when I published Among Friends: Who We Like, Why We Like Them, and What We Do with Them. Back then, however, the depredations of illness and the strains it puts on friendship had barely dented my consciousness. Neither I nor any of my friends had yet been stricken with cancer, heart disease, stroke, Parkinson’s, or Alzheimer’s. Now, a quarter of a century and uncountable maladies later, life has ripened me for the subject.
I resolve that, as soon as this morning’s treatment is over, assuming I can make it home through the blizzard, I’ll type up everything I can remember about my interactions with my friends since the day I sent out the group e-mail that divulged my cancer. I’ll revisit their reactions to news of my diagnosis, my reactions to their reactions, their questions, my answers, their deeds, my needs, and so on. And because I can’t possibly have experienced every permutation of friendship and illness, I decide to start interviewing people of all ages, racial, ethnic, and geographical backgrounds—people like the elderly African American now warming his hands over the radiator, the woman in the green turban at the coffee machine, the emaciated guy with the Walkman, the girl holding her mother’s hand.
At this point I’m gripped by an idea that changes everything: I’ll use my waiting time to interview my fellow waiters, who, like me, are killing time at MSK in the hope that time won’t kill them. No need for me to go out and report this story; all the human diversity a writer could wish for passes through this poignant, maddening waiting room every single day. My subjects would be my fellow patients and their accompanying spouses, partners, parents, children, or friends. Cancer is what brought them here, but all of them surely have had other illnesses as well. They all must have friends who have either helped or hurt them, and friends whom they’ve helped or hurt. And their companions must have been patients themselves at one time or another and have memories of how their friends treated them.
Suddenly, the waiting room is transformed from a locus of confinement to a journalistic cornucopia. Because MSK schedules patients’ treatments at different times on different days, I would have daily access to a revolving group of subjects who, by virtue of being in this hospital, are authorities on illness and, by virtue of being human, are authorities on friendship.
This book could not have been written without all of them. From the day of the blizzard until the end of my radiation, I spend my waiting time interviewing anyone who is willing to talk—and of the talkers, everyone has a story. When my treatments end I consider returning to the waiting room for more interviews, but I’m too superstitious to tempt fate by hanging out in a cancer hospital when I don’t have to. Instead, I conduct additional interviews at random, seeking out those whose experiences might flesh out the story. I talk to sick people, people whose friends are sick, and friends of people who, though not sick themselves, are in pain because someone they love is sick. I log onto disease websites and patients’ blogs, solicit anecdotes by e-mail, trawl the Internet for first-person accounts. I interview people who used to be sick but got better, those with chronic illnesses and permanent dis-abilities, those whose friends received dire prognoses, and those whose loved ones didn’t make it.
Ancillary to their illness stories I hear memorable charges that the medical community favors family members and discriminates against friends. One patient is annoyed because his best friend was shooed out of his hospital room at the end of visiting hours while his brother was permitted to stay. A flyer announcing, “Art Therapy Group for Families Coping with Breast Cancer” incenses a patient who tells me that her whole family lives on the West Coast, so the people who’ve been helping her cope with her breast cancer are her friends, and if anyone needs some art therapy, it’s them. At another New York hospital the postsurgical waiting room is called, “The Family Atrium,” though some of the most anxious wait-ers aren’t family; they’re friends of the patient. Visitors are permitted into the recovery room one at a time in five-minute shifts, and the hospital staff summons them by calling out “Murphy family,” “Cohen family,” “Rodriguez family,” and so on. This pisses off at least one person, who tells me, “Hospitals shouldn’t assume every visitor is a relative! Why can’t they say, ‘Visitor for Murphy.’ Or, ‘Who’s here for Cohen?’ Or just call out, ‘Rodriguez?’ Friends shouldn’t be invisible at a time like this. We’re here. We’re waiting five hours for our friend to get out of surgery. This is not a second-class relationship.”
I love that quote!
Some of my interviewees are comfortable speaking under their own names; others ask to be given a pseudonym or quoted by their first name only. Despite the stylistic inconsistency, I honor everyone’s re-quest so they can feel free to speak honestly about their experiences. Though I try to give equal time to both positive and negative stories, you may notice a tilt toward people who failed Friendship 101. That’s because I take seriously Eleanor Roosevelt’s advice: “Learn from the mistakes of others. You can’t live long enough to make them all yourself.”
When all is said and done, this book is a hybrid, a quirky amalgam of reportage, memoir, and Baedeker, with some armchair philosophizing tossed in for good measure. Interposed among its ten self-help chapters is my personal sickness story in the form of seven Interludes. In short, rather than a one-size-fits-all formula, what you’ll find in these pages are multiple voices—confessional, cautionary, inspiring—and all sorts of practical advice that I’m confident will help you be a better friend to a friend who’s sick.
From the Book: How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. Excerpted by arrangement with PublicAffairs, a member of The Perseus Books Group. Copyright © 2013.