Lucille Tucker had turned yellow, and her own daughters didn't even realize it.
Bilirubin from her faulty liver was slowly leaking into her body, seeping into her bloodstream and dyeing her skin a light shade of goldenrod. And still no one noticed.
It seemed even the house she lived in in Missoula was conspiring against her: muted yellow walls and softening lampshades allied to swathe the room’s contents in a perpetual pale maize-colored glow, concealing her body’s eerie discoloration. Lucille Tucker clearly looked yellow, but so did everything else.
It was Lucille’s youngest daughter, Tina, who, after seeing her mother in the unaffected light of the outdoors, called her older sister Karen in February 2009 and observed that their mother looked strange. Karen Neumiller, a registered nurse, immediately drove to her mother’s house and marched 72-year-old Lucille into her comparatively less yellow kitchen only to realize the whites of her mother’s eyes shone the color of sunflowers.
The jaundice prompted an immediate CT scan and an array of blood tests. It was cancer, the Missoula-based doctor told the family, and it hadn’t started in her liver. It had spread there from Lucille’s gallbladder, which was diagnosed as having harmless gallstones almost 30 years earlier at an Indian Health Service facility on Montana’s Fort Belknap Reservation.
All those years ago, IHS doctors told Lucille gallstones were causing the excruciating pain in her abdomen and ordered her gallbladder be removed via a surgery called a cholecystectomy. At the time the operation was invasive, requiring a large incision, and recovery time was extensive, unlike today when it can be done with tiny incisions through which surgical cameras and instruments are inserted. But doctors said it would relieve her pain and prevent any serious gallstone-related complications from manifesting themselves in the future.
If Lucille wanted to take the doctor’s advice and pursue the surgery, however, she would have to pay for it herself: IHS refused to cover the thousands of dollars it would cost for the procedure, since she had been living off tribal lands for more than 180 days.
Lucille, an enrolled member of the Ho-Chunk tribe of Wisconsin, had lived on the Fort Belknap Reservation with her Fort Belknap-enrolled Assiniboine husband Bill Tucker for more than two decades. After bearing six children and realizing the economic limitations of reservation life, Bill and Lucille packed up and moved to Missoula in 1975. In doing so, they effectively relinquished their access to most IHS-provided health care.
They were urban Indians now, violators of the 180-day rule, with few options. Lucille and Bill did not have private health insurance. They didn’t have thousands of dollars to pay for the expensive procedure on their own. Urban Indian health clinics did not and still do not have the funds or resources to provide much more than a routine dental visit or a generic asthma prescription.
So the gallstones stayed, and so did the gallbladder.
Thirty years later, Lucille Tucker turned yellow. She lost weight, her hair thinned, she stopped eating. And on June 24, 2009, at 10:22 in the morning, four months after her diagnosis, she died in the home that had so cruelly concealed her plight in the first place, surrounded by family that knew it wasn’t the walls that were to blame.
•••
Back in 1975, when Lucille and Bill’s family had just moved from the reservation to the urban center of Missoula, Karen Neumiller was still named Karen Tucker. And 14-year-old Karen Tucker, the students of Hellgate High School soon learned, did not take crap from anyone.
While Karen was busy fighting almost daily with peers she says were racist and mean-spirited, her younger sister Tina silently bore the harassment until she got home, when she would cry to herself and attempt to fend off the rapidly encroaching sentiment of unfounded self-loathing.
As the two daughters of Lucille grew older, their disparities in personality became more apparent. Tina moved back to Fort Belknap almost half a dozen times, citing cutting loneliness and an intense need for security as her reasons. Karen never went back—ever—and she doesn’t intend to. Tina chose enrollment in the Ho-Chunk tribe (from their mother’s side), while Karen is enrolled in the merged Assiniboine-Sioux tribe (from their father’s), which shares the reservation with Gros Ventre Indians. The tribes signed the Fort Laramie treaties in 1851 and 1855, which, in exchange for land concessions that ultimately set the reservation borders in 1888, guaranteed them certain rights, among them health care from the government.
These two women, now 49 and 47 and different in so many regards, are at present very much alike in one seriously significant respect: both are currently unemployed, and with no private health insurance to cover their medical expenses, must rely on scant IHS services to obtain their prescriptions and any basic care they need. Meanwhile, bills for CT scans, ultrasounds, and specialty care providers continue to pile up and dig the sisters deeper into debt — services IHS will not cover, simply because Karen and Tina no longer live on the reservation.
According to the 2000 U.S. Census, 66 percent of American Indians and Alaska Natives live in urban areas while 1 percent of the Indian Health Service budget is devoted to urban Indian health centers and clinics, such as the Missoula Indian Center. It has no budget for medical treatments, so the center can provide only outreach, prevention and referral programs for the urban Indians residing in the second-largest city in Montana.
As enrolled members of federally recognized tribes, Karen and Tina can still get direct care services from any IHS facility. These benefits include access to pharmacy supplies such as prescriptions, limited dental, and minor medical care. Anything more complex, like specialist care, X-rays, or lab work, is classified as contract care, and rigorous eligibility requirements (including residence on reservation or trust land) make it nearly impossible for the majority of Montana’s Indians — 40 percent of whom live off the reservations — to obtain these specialized services.
Missoula’s closest IHS facility is located on the Flathead Reservation, in St. Ignatius, about 45 minutes north. Since gas is expensive and time precious, Karen, Tina, and their older sister Sandy take turns embarking on the journey to get the group’s prescriptions. Sometimes, the women can have their prescriptions transferred to the tribal health clinic in Arlee, cutting their commute nearly in half. But this convenience is not without its shortcomings.
In mid-March, Karen drove up the meandering U.S. Highway 93 to the St. Ignatius pharmacy to fill her prescriptions for anti-depressant and anti-inflammatory medications. The pharmacist politely informed her the wait would be at least two hours. Because Karen’s newborn grandniece was with her and was fussy from vaccinations, she was reluctant to wait so asked them to transfer the prescriptions to Arlee where she would be able to pick them up soon. A week later, she was still without her medication.
“So far they haven’t sent it to Arlee,” she says, exasperated. “So now I’m waiting and not taking the medication that my doctor wants me to take because I either have to go all the way back up to Mission (St. Ignatius) to get it, or wait for them to send it down to Arlee.”
But she is reluctant to sound critical. “I think that they are doing the best that they can,” she adds quickly. “I’m very grateful for their programs, but as a community member who uses these services, it’s a real problem.”
To obtain even basic care at St. Ignatius, barriers must be navigated and hoops must be jumped through. Potential clients must provide proof of enrollment or descendancy from an enrolled member, a copy of their birth certificate and Social Security card, and two proofs of residency (pieces of mail with name and current address). Then, if all the parts of this puzzle can be gathered, it is on to a hefty stack of paperwork.
“There’s so many stumbling blocks and there’s so much red tape and you just want to scream,” Karen says, imparting a sentiment common among urban Indians who say they are being penalized for pursuing opportunities off the reservations.
Because Fort Belknap, like most Montana reservations, has an unemployment rate that hovers around 70 percent and poverty so pervasive that Karen compares it to a Third World country, it isn’t difficult to understand why someone would choose to leave the reservation in search of better prospects, even at the expense of necessary social services.
But Karen believes where an American Indian lives shouldn’t affect access to health care.
“Just because I’m not living there and I choose not to live there doesn’t make me any less Native,” Karen says, frustration and anger tinting her tone. “And I shouldn’t lose services for living off the reservation. I just don’t think it is fair that we are penalized for that.”
•••
Tina Snell, Lucille’s youngest daughter and Karen’s younger sister, sighs heavily as she takes a seat and rests a black zippered bag slightly larger than a fanny pack on her lap. The table where she sits, based on its location, probably triples as the kitchen/living room/dining room table in her Missoula modular home. She sighs again, and one by one, slowly and resignedly unloads the contents of her portable medicine cabinet.
Fish oil for her high triglycerides. Metformin for diabetes. Cymbalta for depression. Amitriptyline for insomnia. Skelaxin for muscle spasms. Belladonna for irritable bowel syndrome. Mirapex for muscle spasms and restless leg syndrome. Cetirizine for allergies. Omeprazole and misoprostol for stomach ulcers. Hydrocodone and meloxicam for fibromyalgia. Levothyroxine for hypothyroidism.
“It’s sick. It’s just sick,” she says as she exhales and shakes her head sullenly, staring helplessly at the assemblage of bottles now littering the table. Tall, short, fat, and skinny translucent orange containers, with the occasional solid white or clear green sticking out like sore thumbs.
Mercifully, direct care services cover the cost of Tina’s multitude of medications.
“If they cut us off, I don’t know…,” her voice fades away, contemplating. “I’d probably have to move back because of this.”
Tina began working an administrative job at the Missoula Indian Center in 1997, which provided her with health coverage, but she was forced to quit in 2002 at the urging of her doctor after stress-induced costochondritis, a chest wall inflammation, landed her in the ER several times.
During this bout of unemployment, bills not covered by IHS for treatment of her chronic medical disorders began to pile up. When she returned to work at the center in 2005, 25 percent of her wages were garnished to go toward outstanding medical bills, but four years later she was again forced to resign due to recurring chest pains.
Her five sons are grown and have moved out, but Tina now shares her home with and cares for two disabled brothers-in-law, Floyd and Lee. Their monthly Social Security checks, along with the quarterly $2,900 that Tina receives from the money brought in from Ho-Chunk casinos, help pay for groceries and rent. Medical bills are cast to the wayside in lieu of food and shelter.
Bill collectors harass her, doctors threaten to cease care if they don’t see some money. One of her favorite providers, Dr. Raymond Howard, will be forced to discontinue Tina’s services if her bill is turned over to a collection agency for defaulting on the payment from her last visit.
“I don’t want to lose him because he’s been my doctor for years and he knows all about me,” she laments, carefully averting her eyes from the pill bottles still strewn across the surface of the kitchen/dining room/living room table. “I don’t want to go to a new doctor.”
Tina never expected she would be this sick, this early. She never knew it would be this bitterly complicated to find affordable, accessible heath care. But most of all, she never knew moving off the reservation virtually erased her right to the services that were promised to her people in treaties signed so many years ago.
“It’s just a slap in the face,” she says, as the disappointment proceeds to cloud and manipulate her features.
•••
It isn’t surprising that after almost a year, Lucille’s death still plagues the thoughts of her daughter Karen.
“I don’t think she would be gone today if she would have gotten the medical attention that she needed at the time,” she says evenly, referring to the gallbladder disease that, if left untreated, can lead to cancer. “I don’t think she would be dead today. And that is my honest opinion.”
But Karen’s musings, deliberations and judgments concerning her mother’s death are forced to share mental space with another person, a person whose ashes are buried alongside Lucille’s at the Missoula City Cemetery.
Anthony Neumiller, who would be Karen’s oldest son, died at the age of 25 in January 2004 from an accidental overdose of fentanyl, a painkiller 100 times stronger than morphine. Suffering from anxiety, obsessive-compulsive, bipolar, and schizoaffective disorders while he was alive, Anthony would hallucinate, talk to himself, and invent imaginary friends. Since Anthony’s blood quantum did not qualify him for enrollment in any Native American tribe, he was labeled a first-generation descendent, disallowing him from IHS contract care services. Twenty-two when his symptoms began to manifest, Anthony was too old to fall under the umbrella of his mother’s health policy.
Karen and her husband Ed went bankrupt and lost their house trying to pay for Anthony’s psychiatric appointments and frequent, overdose-provoked emergency room visits. Karen still carries her deceased son’s International Student Identity card in her wallet, a reminder of the self-sufficiency, independence, and promise her son demonstrated when he went to study abroad at a university in Morocco from 1999 to 2000, before he was forced to drop out of school as he spiraled into the abyss of his mental illness.
Six years after her son’s overdose — which left behind $75,000 in unpaid medical bills accumulated over the three years preceding his death — she’s faced with a fresh deluge of payment demands for her own bills and a disquieting sense of déjà vu.
Three weeks after quitting her three-year-long RN position at the Missoula Indian Center in November 2009, Karen started to experience sharp pains in the side of her stomach.
A series of out-of-pocket doctor and specialist visits, complete with a $1,000 CT scan and several follow-up ultrasounds totaling a little under $500, confirmed the existence of a mass. A mass, accompanied by its inextricable association with ambiguity and dread. Doctors urged Karen to have the tumor removed and biopsied.
Struck by a pang of sick familiarity, Karen realizes there is no chance of getting the mass removed. With no private health insurance and no help from her tribe due to her status as an urban Indian, Karen lacks the financial flexibility to put thousands of dollars down just to schedule the surgery.
So, the mass, along with its ambiguity and dread, remains.
“I’m just keeping my fingers crossed that it’s not cancerous,” she jokes wryly as she glances almost imperceptibly down at her abdomen.
Karen is sitting in her mother’s living room, which has now become her living room, nestled in the corner of a patterened sofa backed against the house’s west wall. She and her husband moved into her mother’s small home on the south side of Missoula after Lucille passed away. Karen is silent for a moment, considering her current situation and that of her dead mother’s.
“I’m really angry about my mom,” she finally says. “I’m angry that she’s gone. I’m very angry at IHS because they wouldn’t pay for her gallbladder surgery when she needed it.”
She shifts her weight on the sofa.
“It does make me worried that history is going to repeat itself,” she adds thoughtfully, and her voice is steady as she stares off into the room — her room now — that is still suffused with such unrelenting shades of yellow.