Sick of it
Healthcare, as the people of Hull will tell you, is not just about diagnoses, pills, and surgeries. It's about forms. And public transit. And gasoline. And long waits. And phone calls. And gentle hands and warm hearts. As Charles P. Pierce learns in Part 2 of his series on campaign issues, this South Shore town with high cancer rates among both men and women is a study in how the insured feel just as anxious today as the uninsured.
(Photograph by Suzanne Kreiter)
John Trapp has bladder cancer. "Thank God I had the insurance I had because I'd be dead now," he says.
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There's a sad evanescence to the place on a day like this, gray fog rolling across gray, wet sand, just ahead of the rain piled up in the gray clouds over a gray and rumpling sea. Walk along Nantasket Beach in Hull, and the mist envelops you, from above and below, and out of every point on the compass. Nothing seems permanent. Everything seems to be mist and fog and shadows. Past and present, blended and vague, lost and found. The battered businesses, all slouched and roof-angled along Nantasket Avenue. The doughty old carousel, the last tiny remnant of the glories of Paragon Park, jingling and twinkling, the paint on the horses cracked and chipped. On a day like this, it's easy to imagine that you can see the ghost of the old amusement park there in the thickening fog, a place once dedicated to impermanence now spectral in memory. The long block running from the arcade to the carousel looks insubstantial, like a movie set. It is as though you could walk up to it, push on the walls, and have the whole thing fall over backward and into the tidal pond behind it. Nothing looks solid in the mist and the rain and the gray of the morning.
John Trapp lives north of the beach, up beyond the faded entertainment district and the oceanfront bars and the new hotel that looks like an old hotel, in the basement apartment of the rooming house he manages. It is a dark place on the sunniest of days, and this is not the sunniest of days, and the apartment looks like early evening just before noon. He's been in Hull his whole adult life. He has made and lost at least one small fortune managing bars along the beach. "I was a millionaire once," he says. "I just trusted people. Then I got screwed." In the crepuscular light of the place, he is having a cigarette and drinking a beer. Neither is his first of the morning.
He hadn't seen a doctor in almost seven years. Then he met a woman named Sandie Grauds, who is the community outreach and family support director for the town's board of health. She insisted that John sign up for MassHealth, a state-run program that enables low-income citizens to obtain affordable health insurance so that they will be in compliance with the 2006 healthcare reform legislation requiring every citizen of the Commonwealth to be covered. John balked at all the paperwork, and he hadn't been sick a day in his life, but Sandie Grauds is as relentless as the tide, and she wore him down, and John signed up. "You jinxed me," he jokes with her today. "I signed up for that, and I got friggin' cancer."
Not long after enrolling in MassHealth, John experienced some pain in urination, and then there was some blood, and then there was some more blood. "It was as red as the ink in that pen," he recalls. He was diagnosed with bladder cancer. "They said it was from smoking," he says. "Look at me. I'm still smoking. I've smoked for 45 years." The doctor told him he could have a second opinion but that it might take weeks to get an appointment in Boston, and by then the cancer might have spread throughout his body. "I asked my doctor what would happen if it broke through," John recalls. "He says, 'Well, you'll have about two years, and you'll do a lot of suffering.' I said just do it."
They operated on him and took out his bladder. There were complications after the surgery and John had to stay in the hospital for 16 days, but the doctor said they'd gotten it all. There would be no chemo, no radiation. But he would have to wear a urine bag for the rest of his life. He went home. A few months later, he awoke at 3 in the morning, sweating with fever. They rushed him to a nearby hospital. The incision from his operation sang with pain every time the ambulance rolled over anything in the street. When he got there, John saw ambulances from all over that part of the state. Cohasset. Hingham. Scituate. Weymouth. All of them.
The emergency room was crowded. "I got in there at 9 in the morning," he says, "and it was five hours before I saw a doctor. An hour after that, a guy came in and says, 'John, I have to put you in the hall.' I was there until 4 o'clock the next morning. People were walking by in the hall. I had to empty my urine bag in front of people. I called the nurse, and I said, 'Look, when can I get out of this hallway? I'm aching here. Can you give me a couple of sleeping pills? I been up since 3 o'clock' " yesterday morning.
He had developed pneumonia. "Anyway, at o'clock the next morning, this guy comes down, and I wish I could remember his name. He just kept seeing me every time he went by. He says, 'John, I'm taking you up myself,' " John recalls. "He took me up to the room, and the nurse finally gave me a couple of sleeping pills.
"I wasn't mad. I mean, to me, thank God I had the insurance I had, because I'd be dead now. was never sick."
All of the issues in this campaign year seem to involve the fragility of things once taken for granted. Banks are failing. Mortgages seem like the end products of an elaborate three-card monte game. The stock market is diving and taking our 401(k)s with it. All the tectonic plates beneath what we once glibly - and smugly - called The American Dream seem to be shifting almost by the hour.
But healthcare is the issue that causes the deepest tremors. Psychologically, at least, the well feel as anxious as the sick do, and the concerns of the well insured ("What if my job is outsourced and I lose my benefits?") differ from the dread of the uninsured only as a matter of degree. Even with the economy tanking and two wars groaning on, it's the issue on which all that shadowy polling data about whether the country is on "the right track" come into sharpest relief. Only three week ago, a new study from Cambridge Health Alliance said more than 11 million Americans with chronic illness - diabetes, heart disease, asthma - were not getting the care they needed because they lacked insurance. The uninsured were four times more likely to not see a doctor within the past year, the study found, and six times more likely to simply use the emergency room when they got sick. It is no wonder healthcare is the most obvious source of the anxiety directed toward what is known more generally as "The Economy," and it is the issue under which you can hear most clearly the constant, low-humming demand for some kind of, yes, "change."
Outside and up the stairs from John's apartment, the day has thickened with fog and rain, and the sea is almost invisible now, lost in the swirls of gray. Along the fog-darkened beach, nothing seems substantial. There's a terrible sense that one push could send the entire place crumbling, that it wouldn't take much at all to make it all disappear.
THERE HAS ALWAYS BEEN CONCERN about cancer in Hull. Some residents mutter darkly about the powerful radio towers on the outskirts of town. In the late 1980s, a 76-year-old woman from Allerton Hill named Bertha Silverman was diagnosed with non-Hodgkin's lymphoma. After her own diagnosis, she noticed that a number of her neighbors had been diagnosed with various cancers as well. "It was a very puzzling diagnosis for her and her entire family, because nobody on either side of the family to our knowledge had ever had any kind of cancer," says her son, Marty Silverman.
This might well have been the White
Today, according to the most recent figures from the Department of Health and Human Services, Hull is the only town in the Commonwealth in the top 18 for the incidence of cancer in both men and women. As was the case when Bertha Silverman started poking around 20 years ago, there doesn't seem to be any one cause for the cancers. Many of them are lifestyle cancers. Hull has a lot of people who smoke and a lot of people who drink. In her work, Sandie Grauds has compiled a list of her clients who have been stricken with the disease. Many of them are young. Bob was 28, and he had cancer of the colon. Bonnie, Claudette, and Roberta all got breast cancer by the time they were 40. "This is something I just knew," Grauds says. " didn't notice with the senior citizens that there was a lot of cancer, because I expected there to be a lot of cancer. Now I deal with families more and more, and I was surprised how many middle-aged people had it, 40 and 50."
Healthcare is the sharp end of the stick of nearly every issue in the presidential campaign. And it has been for almost two decades. Bill Clinton ran on it in 1992, following the lead of his chief strategist, James Carville, who'd won a senatorial election in Pennsylvania for a man named Harris Wofford, who ran almost exclusively on a platform of reforming the way the country provides healthcare to its citizens. Clinton's attempt crashed and burned; it was cumbersome, badly explained, and the Republicans demolished it and almost demolished Clinton's presidency into the bargain. Nevertheless, the issue did not disappear. Here in Massachusetts, starting to think about his bid for president, Mitt Romney pushed his own mandatory health insurance plan through on a bipartisan basis and touted it strongly during his abortive 2008 campaign, even though its government mandates seemed strikingly dissonant with Romney's clumsy courting of the GOP base on other issues. On the other side, John Edwards made healthcare reform central to his campaign's themes of economic populism, while Hillary Clinton and Barack Obama first jousted fiercely over whose healthcare reform proposal was "universal." The "45 Million Uninsured Americans" have been more a part of the campaign's rhetoric than Jesus or Lincoln or Nouri al-Maliki.
But what of the people who are insured, the ones who are trying to navigate through the red tape and the bureaucracy, the ones who fill out the forms and check all the boxes and scope out which providers are covered under which plans, the people whom the healthcare wonks call "the worried well"? For many of them, healthcare also means gasoline as well as pills, a T schedule as well as a prescription. If "healthcare" sharpens the focus on "The Economy," then cancer sharpens the focus on healthcare, and it comes down to a place like this little office on the first floor of the Town Hall in Hull, which stands on a leafy hillside up a ways from the beach. Sandie Grauds works there, as does Joyce Sullivan, the town's public health nurse and health code enforcement officer. In their cramped space, just down the hall from the selectmen's office, the two of them see the entire issue clearly in microcosm.
"It's changed here in the past 20 years," says Sullivan, whose duties include housing inspections and proper disposal of medical waste. (On this day, she'd come to work after picking up a plastic bag full of waste that had washed up on the beach in the storm the night before.) "We now have working poor, a lot more working poor, in the past few years. It changes our jobs in huge ways. People can't get to their appointments, whether it's seniors or whatever. A lot of people don't have cars, so if they're going into Boston for treatment, they have to go three different modes of transportation. I have people knock on my door, you know, 'Can you come over and change my dressing?' I try to do a triage on the phone. I can do some of that, but I can't become a community nurse."
"There are not a lot of support systems," Grauds adds. "The impact on the community can overload the system. You get a diagnosis of cancer, and it can be slow to get appointments. You can't work, so you get nonpayment of rent or a foreclosure. Transportation is an issue. The biggest conundrum of all - a parent with a couple of kids who owns or rents a home, and then they get sick and can't pay and they get evicted or foreclosed. You can say they can go to their family, but what if they don't have one? I can't put that family in a shelter." So she works with them, one at a time, getting them to appointments on time, reinforcing all the small parts of the infrastructure of their lives that they might not have noticed had they not gone through the upheaval of a diagnosis. None of these small things is about healthcare, except that they all are.
THE HOUSE IS ON THE SIDE OF A LITTLE HILL. You can't see it from the road because the foliage on the slope has grown so lush. Almost 30 years ago, Donna Montgomery moved to Hull from Winthrop with her first husband. He'd summered there as a boy, and they bought a house close to the ocean and moved in when her son was 4 days old. "I didn't think there actually was a town here," she says. "I just thought it was Nantasket." After outgrowing their first house, Donna and her family moved into the house on the side of the hill.
Two years ago, Donna was diagnosed with a brain tumor. There was seven hours of surgery and then 30 radiation treatments, in addition to oral chemotherapy. She also enrolled in an experimental anti-angiogenesis program, whereby the tumor in her brain is starved of the blood it needs to grow. For the radiation, and for the experimental program, and for the most basic monitoring of her disease, Donna had to start going from Hull to Boston. "In my case," she says, "transportation was the biggest issue, getting from Hull to Mass. General twice a week. I've done that 240 times."
At first, she drove herself, parking her car at the Quincy T stop and taking the Red Line train from there to the stop near the hospital. (One day, completely accidentally, Sandie Grauds found Donna looking for her car in the garage.) After a while, though, Donna lost her license due to the complications of her illness. So now she has a neighbor drive her whenever possible or she depends on the MBTA's The Ride van, which she loves for its convenience but sometimes finds runs a little unpredictably. The van, she jokes, "is like a box of chocolates. You don't know what you're going to get."
Donna already has lived a year longer than the doctors said she would, but the cancer in her brain is not going away. Her son has put his own life on hold to care for her. (She is very proud of the two saltwater aquariums - one of them a saltwater tank - that he built for her in her living room.) She's already anticipating the days in which she'll need a motorized wheelchair to get around; a therapist told her she won't have the strength in her arms for a regular model. A nurse comes in a couple times a week, and Sandie Grauds visits regularly to help her with the endless logistics of being sick in America. (The nurse's visits will stop soon, Grauds says, since Donna's son is living with her; instead, since Donna has insurance, she will get a stipend and also a housekeeper whose pay will be partially covered.) They found her a hospital bed and moved it in upstairs, and Donna had the first good night's sleep she'd had in months. "In this country," she says, "you hear all your life about saving for retirement, about 401(k)s and all, about building up your nest egg for when you retire," she says. "If you get sick, God help you if you don't spend yourself down to being a pauper again. You get no help, nothing to help you along. If you have that money for your old age, it's going to get spent.
"I have good prescription coverage, but you really have to work at those things. You have to be bold and apply. You have to get busy."
Her life once seemed so solid, so predictable. She did everything right, putting a little aside all through her life in order to build a comfortable retirement for herself, but this is not the retirement that she had in mind. Her life savings, it seems, are saving her life, at least for now.
SOMETIMES, IT ALL JUST SEEMS LIKE A MAZE, one with an exit that seems to recede as you get closer to it. Jack Timulty is a 50ish former Marine who worked for a while at the post office until he quit to take care of his disabled son, Riley, who is developmentally challenged. "He's 11 now," Jack says, "but he's really 8. He didn't walk right. He didn't talk right. He was 6 years old before you could understand a word out of him." Driving amphibious vehicles in the Corps had cost Jack most of his hearing. Eight years ago, he moved to Hull to be close to the ocean.
A single parent, Jack took a year off under the Family and Medical Leave Act to get Riley squared away. Working with the ubiquitous Sandie Grauds, Jack fought through the paperwork and got Riley his benefits under a Social Security disability program. In March, Jack got worried about a spot on the right side of his own face that would not heal. "I went into Mass. General, to the emergency room, and they said you have cancer." The floor dropped out from underneath him. "I was devastated. I didn't know what to think," he recalls. "I felt like I was going to break into tears right there in the waiting room."
The ER doctors told him to find a dermatologist who would do a biopsy and confirm their diagnosis. It took Jack six weeks to get an appointment at the VA Medical Center in Jamaica Plain, a 21/2-hour trip each way on the T. It took two more weeks before he got the results; he had a basal cell carcinoma, the most common and most curable form of skin cancer. He did not have melanoma, which was what most terrified him. His dermatologist told him to undergo a Mohs procedure, a painstaking operation during which tissue is removed, a little at a time, and sent to the laboratory for study, until all of the cancer is removed. It is a stop-and-start regimen for the patient that can take the better part of a day. It took a month for Jack to get a consultation for all of this, and then they scheduled his surgery. For October. "I went to my own doctor to see if we could speed it up," Jack says, "and he told me that, if I went to Mass. General, the process would be starting all over again, and it would take me longer to set me up with the Mohs. There's probably ways I could get it done quicker, but I want this out of my face."
Ever since his diagnosis, Jack has lived with a clock ticking in his head. He's heard that what you see on the surface is only the smallest part of the cancer, and cancer is cancer, no matter how curable. "I was surprised," he says. "I thought cancer would be a priority, you know? I guess with the number of people the VA has to deal with these days, it's just a waiting-in-line kind of thing. I mean, my hands are tied saying, 'Can't you just hurry this along? I want this out of my system.' I don't want them to get mad at me. It just seems an awful long time to wait is all."
In a sense, in this campaign season, that clock in Jack Timulty's head is ticking for everyone, sick and well. Some doctors say that one person gets sick, but the whole family gets the disease. The election seems most about the fragility at the heart of the institutions on which we used to rely. The comfortable presumptions of The American Dream seem clouded now, and spectral, less solid than they've been in decades.
Seen from a place like Hull, healthcare seems to be the deepest fog of all, everywhere and nowhere all at once in a time in which nothing at all seems certain anymore - well, taxes, perhaps, but not necessarily death.
Charles P. Pierce is a Globe Magazine staff writer. E-mail him at cpierce@globe.com.
HULL: THE GOOD, BAD, AND UGLY
HULL WAS CALLED NANTASKET BY THE WAMPANOAG INDIANS.
The Puritans came to the area in 1630. In 1644, the name was changed to Hull, presumably for the town of Hull in Yorkshire, England.
Hull is the FOURTH SMALLEST TOWN by land area in Massachusetts.
From the book Old Nantasket: "It was acknowledged by all that at the turn of the century, Nantasket was . . . THE MOST FAMOUS SEASHORE RESORT IN THE UNITED STATES AND ONE OF THE MOST FAMOUS IN THE WORLD." It was the summer home of notables R.H. Stearns, Boston mayor John F. Fitzgerald, Grover Cleveland, Sarah Bernhardt, and William McKinley, among others.
Women in Hull are 3.5 TIMES MORE LIKELY TO COME DOWN WITH LUNG CANCER than are women in neighboring Cohasset.
OVARIAN CANCER rates in Hull are double that of the state.
Men in Hull have a 180 PERCENT HIGHER CHANCE OF BEING DIAGNOSED WITH LEUKEMIA than men across the state.
For every one man in Massachusetts diagnosed with MELANOMA, 1.7 men in Hull are diagnosed with this deadly form of skin cancer.
Hull has 11,050 residents and is 97 PERCENT WHITE (Massachusetts is 84.5 percent white).
