Laurie’s most recent essay, Connection Lost: Distance Learning’s Great Divide, appears in About Place Journal. It deals with the effects of remote learning on a small number of students in the South Bronx. You can read it here.
Among other online articles, Laurie was very honored to write a personal essay about the stigma of lung cancer and the death of her brother for StandUp2Cancer, Lung Cancer and Stigma; a Sister’s View. And for Pop and Politics, she was delighted to write a profile of the Senegalese-American drumming prodigy, Magatte Sow (article below).
Lung Cancer and Stigma; A Sister’s View
In the last weeks of my brother’s life, as the cancer that began as a tiny dot on his lung spread with shocking relentlessness through his liver, spine and brain, my two sisters and I took turns flying to Washington D.C. to help care for him. Niles had worked as a newspaper reporter in D.C. for almost thirty years, and now he was dying at home in the house he shared with his wife, Ellen, and his seventeen-year-old son, Christopher. The visiting sister would report back to the other two: today, he could no longer walk without wincing in agony; today he stopped eating altogether or began to hallucinate. The stories were unimaginable, even though nine months earlier Niles had been diagnosed with stage 4 small-cell lung cancer, and it hadn’t taken more than a few minutes on the internet to predict the future, down to the horrifying details. His death was coming as brutally and swiftly as promised.
During this time I booked what is called a “bereavement ticket,” a slightly cheaper, more flexible airline fare issued to family members in cases of imminent death or funeral. The agent on the phone was appropriately subdued and courteous, and asked a series of questions such as where Niles was, the name and phone number of the hospice program and the caseworker in charge of Niles. She asked the nature of his illness, and when I said cancer, she said, “I’m sorry. What kind?” At the time, I didn’t think to ask if it mattered what kind of cancer he had. Were bereavement tickets granted only in cases of certain kinds of cancer and not others? When I answered, “Lung cancer,” the agent completely dropped her professional demeanor and asked, in an almost gossipy tone, “Did he smoke?” Automatically, I answered, “Yes,” and immediately had the desperate impulse to qualify it somehow. Irrationally, I wanted her to know that he had a child. “What a shame,” she said with at tsk-tsk, and with this she washed her hands of Niles and his bad behavior. I got the bereavement ticket, allowing me to change my flights without penalty. But I had already paid a bigger penalty: for the price of the diminishment of the loss of my brother, I had given the ticket agent the satisfaction that he had brought this on himself.
Niles smoked a pack of Marlboros every day from the age of sixteen until his diagnosis at age 51. He began smoking in the early 1970’s when cigarette ads on TV were touting L&M’s as “just what the doctor ordered.” Our father, a doctor, smoked–L&M’s, as chance would have it–and is now in his eighties. He still smokes and has nothing whatsoever wrong with him. Niles never once tried to quit smoking. When his son was born, he stopped smoking inside the house, and instead went to a tiny porch outside his kitchen to smoke. During his illness I would go outside to talk on the phone, to give the daily report to my sisters out of earshot of the sleeping, dying Niles, and the ashtray was still there on the porch, full of his old butts.
When he was diagnosed and began chemotherapy to shrink the tumor in his liver, Niles quit smoking instantly. “It feels stupid to be in chemotherapy and be smoking,” he said. Even though there is no guarantee that it would have helped (50% of new lung cancer diagnoses are in people who quit decades earlier), I couldn’t help the thought that if it were possible to quit now, what was stopping him fifteen or twenty or thirty years earlier when it might have altered the outcome? I had quit myself many years earlier, as had one of my sisters, and neither of us had found it all that difficult. And yet science tells us that for others it is far beyond a matter of will power. Indeed, the latest findings suggest a genetic link to nicotine addiction that makes it harder to quit and leads more often to lung cancer. In a culture where the new thinking on addiction to alcohol, drugs and even sex is that they are diseases much like cancer itself, smokers are blatantly blamed for bringing on their own cancer. This blame comes at great cost; lung cancer kills more people annually than breast, prostate and colon cancers combined (and increasingly kills non-smokers) and receives far less funding. In fact, for the year 2005 the Center for Disease Control allotted $204 million for breast and cervical cancer research, $14 million for prostate cancer research and $14.6 for colon cancer research. The amount allotted to lung cancer research was zero.
While I bristle at the question, “Did he smoke?” I recognize the need of the questioners to throw a protective ring around themselves. Lung cancer patients do not suffer these kinds of questions alone. Cancer of all kinds is the monster under the bed, and people look for causes and risk factors even if doing so points a finger at a friend or co-worker who is battling the disease. With smoking, they don’t have to look far. They can rest easy knowing that at least this kind of cancer is not random, but is brought on by a weakness of character. When people die of heart disease, it is not normally asked of their loved ones if they ate red meat, or if in a car accident if they were speeding. While we rightly teach our children that smoking is bad for them, we don’t seem to be able to do so without judgment of those who get sick from it.
We worship discipline and the lean body, and glorify the medically disastrous half-starved waif staring out at our young girls from the pages of fashion magazines. We discriminate cruelly and openly against the overweight, and puritanically judge diet and alcohol consumption. Some even go so far as to point to repressed anger as a cause of cancer. It takes a whole lot of collective denial to live and consume the way we do, from what we eat to what we drive. Yet we have nothing but disdain for those who can’t help themselves to the bounty of all this marketing and consumerism and end up paying for it with their health. Living in a culture of misplaced shame, we can’t seem to decide once and for all whom and how we should blame for becoming ill. But smoking, and by extension lung cancer, is an easy target.
As far as I know, Niles never once admitted that he was dying. When the hoarse voice that persisted for weeks and that led to his grim diagnosis elicited concerned questions from fellow parents on Christopher’s soccer team, Niles’ standard line was that it was “laryngitis.” This soccer team was Niles’ world; he lived for the practices, the out-of-town trips, the Liberian boys who came over from Africa without their families and whom Niles watched out for. And now he was seating himself on the far end of the field to avoid the company of the players and their parents. In the one reference to his own smoking that I am aware of, Niles, in a discussion with Ellen about whether to go get Christopher from a party at which they suspected the kids were drinking, Niles said, “The reason this is happening to me is because of the bad choices I made as a teenager.” If this is how he truly felt, what kind of agony must it have been to know that he was leaving behind a wife and child because of something he might have stopped himself from doing if only he hadn’t felt, typically, like an invincible teenager at the time? Niles said he worried that people would treat Christopher differently if they knew his father had cancer. This no doubt did matter to him, but seeing him hiding under his baseball cap at the far end of the soccer field looked a lot like shame to me.
When Niles’ oncologist told him there was nothing more to be done, that all treatment was palliative from here on, Niles heard only that he would undergo radiation for his brain tumors, a sign of hope, he believed. At the mention of the word “hospice,” Niles said, “No fucking way,” and I had to get the hospice nurse to agree not to say the word “death” in her first meeting with Niles. Likewise, he refused to admit to being in any pain, even though his spine was riddled with growing cancer tumors that were so excruciating he winced at every move. When he finally went to a pain specialist the doctor went over the options, some of which were very involved and required surgery. I hadn’t known they could place a pump into a person’s spine that delivered the narcotics directly to the nerves. The pain doc, who wore Crocs and had a faint Eastern European accent, looked Niles in the eye and said, “Obviously these decisions have to be weighed against your prognosis and how much time you have. Have you had that conversation with Doctor X?” Niles said, “No,” and it took all my effort not to contradict him. Was it dementia from the brain tumors? Good old-fashioned denial? Or was it shame at having been a smoker who got lung cancer?
There’s no way to know if Niles would have met another kind of cancer with the same flat-out refusal to admit what was happening, or how he might have reacted if he had never been a smoker and were one of the so-called “innocent” lung cancer patients. Niles had always been someone who didn’t want to be a bother to other people, especially strangers. One can only imagine his mortification as his wife and son were forced to watch him wither, go crazy and die, as his sisters flew in and out from across the country. When I’d leave D.C., never sure if I’d return in time to see him again, I’d tell him I’d be back soon. Niles would say, “I’m not on my deathbed, you know.” “Great to see you!” he’d say when I came back, as though I were there for a party.
From my late night internet wanderings, I knew that chemotherapy and radiation would beat the cancer back for a time, a few months, perhaps four, and then the cancer would start growing again, spread quickly to his spine and brain and would kill him within a matter of weeks. It took three. Three weeks from the time the doctor said the words “hospice” and “palliative” and Niles heard “radiation,” he was dead.
Those three weeks were like a surreal visit to another world, to “the kingdom of the sick,” as Susan Sontag so aptly put it. During those three weeks, my sisters and I sat with Ellen in Niles’ living room listening for his shuffling feet on the floor. He needed to be watched 24 hours a day. Though he slept 23 hours a day, he still managed to be restless, wandering around the house at all hours, trying to grab the car keys at 4AM to go to work. He saw children everywhere. “Where are those kids?” he’d ask, looking around the house, his hands shaking like dry leaves. Bleary-eyed from fatigue and grief, we did puzzles and ordered take-out, which we ate without tasting. When we slept, we did so without resting. The hospice nurses, with their sweet West African accents, brought seizure kits, instructed us on their use and washed Niles. “Nice of you to come by,” he would say to them. Christopher came in and out on his way to a date or a game, his heart silently, invisibly breaking. Just as upon his diagnosis he hadn’t quit his job to climb Mt. Everest or write the great American novel, when it came to the end Niles didn’t want any deathbed dramatics or final proclamations of love and forgiveness for past wrongs. For him, averting death meant keeping everything as normal as possible. Only nothing could ever be normal again. We had been four siblings. Now we would be three, and I couldn’t imagine it.
Being in a family with one less sibling is no more real to me now than it was when he was still alive. It is a shock to realize again and again that he is really gone. And I can’t think too long on the fact that, in the end, in the very end when it was already too late, Niles was able to quit smoking. I just wish he hadn’t been forced to shoulder the blame along with the unspeakable knowledge that he was losing everything. Because in the end, even those who eat too many cheeseburgers, smoke cigarettes, or parachute out of airplanes for the fun of it want to live. The denial it takes to do any of these things does not cancel out the desire to see one’s child graduate high school, something my brother missed by six weeks.
When he started saying things like “I’m getting ready for the big game,” and “I’m getting ready to see Ma,” who died fourteen years earlier, we knew the end was coming fast. We sat together and cried, we coaxed him back to bed and rubbed his back. Did he smoke for all but a fraction of his adult life? Yes. Just as he devoted himself to his son and worked at a job he loved and stood in for the faraway fathers of young African soccer players. Three days before his death, he got out of bed and shuffled over to the computer where he worked on many of his news stories. I asked him what he wanted, but he didn’t answer. He just stood there, urgently jiggling the mouse, trying to bring the blank screen to life.
Laurie began her career in theater as an actress, then began writing and teaching. Teaching the Go Solo workshop at Highways led Laurie to directing several evenings of curated students’ work. One student stood out from the rest because of his brutally honest and achingly funny stories about his experiences in WWII. His name was Fred Rochlin and he was a 72 year old retired architect. Laurie convinced him to work with her developing his show and then spent three years putting his stories together into a full-length solo show, and teaching him performance skills that would enable to him to hold the stage alone for 80 minutes. The result was the highly acclaimed Old Man In a Baseball Cap which Laurie directed at the Actors’ Theatre of Louisville and the La Jolla Playhouse, then under Artistic director Michael Greif, among other venues. Here is the piece Bruce Weber wrote for the NYT about Fred’s show:
This episode of This American Life episode is about Fred’s solo performance work and was written and produced by his amazing daughter, Margy Rochlin:
Laurie’s writing has also included plays, screenplays, essays and fiction; the solo show, Is This America, Or What? which she also starred in and that toured Los Angeles, New York and London. Backstage Magazine wrote about the show: “If the material were not so interesting, Lathem’s abilities would boggle the mind.”
Other writing includes the play, Slide, produced at the Wilton Project and later adapted for the screen, numerous short plays for the Virginia Avenue Project, and Persimmony Jones, written for and produced by Berkeley Repertory Theatre for their school touring production.
Publications include the essay “Bringing Old and Young people Together; An Interview Project,” for the book, “Remembering; Oral History Performance,” edited by Della Pollock for Halgrave MacMillan. This essay describes a program Laurie designed and implemented at Berkeley Rep in which teens and senior citizens interview each other, and then tell each other’s life stories in the first person, thereby speaking in the voice of “the Other” in the form of dramatic monologue. The teens then wrote short plays based on the interviews with the seniors.
For Pop and Politics: