Story by Amber Kuehn
Photos by Ashley McKee
The machine to Andrew “Junior” Small’s left is keeping him alive.
He sits in the dialysis unit at Northern Montana Hospital in Havre, tubes in his left arm connected to the machine that performs the functions his kidneys no longer can. It moans with a soft humming sound, a steady rhythm that mimics the monotonous routine of many of his mornings.
Three days a week Dorothy Small wakes up her son at 5 a.m. Every Monday, Wednesday and Friday, an Indian Health Service van picks him up at 5:30 from his home in Box Elder, for the 25-mile drive from Rocky Boy’s Reservation to Havre.
Small was diagnosed with diabetes at age 24. Today he is 41. He recalls his first sign that something was amiss: His urine, he says, looked white. His mom, who has diabetes herself, urged him to go to the health clinic. A few hours after he took the first tests the diagnosis was confirmed.
“I was scared for awhile,” he says. “My mom said, ‘Well it’s with you now. There’s no way you can shake it off. If you’ve got a cold you can shake that off, but not diabetes.’”
Since he began receiving dialysis in September of last year, Small has been hooked up to the machine for an amount of time equivalent to ten 40-hour workweeks. He has spent four hours a day, three days a week having his blood removed, cleaned and replaced.
“It seems like forever,” he says.
He has never missed a treatment. He can’t. If he did, the doctors told him he would only have two weeks left to live.
Previously, pills were all that Small needed for medication. But now, with failing kidneys, dialysis has become his primary treatment.
Kidney failure is just one complication that can result from diabetes. Blindness, nerve disease, and heart disease can all occur if the disease isn’t managed properly.
Rocky Boy’s Reservation has the highest rate of heart disease in Montana.
As Small removes the white sock from his right foot, he reveals yet another complication. People with diabetes are 15 times more likely to have a foot or lower leg amputation than someone without the disease. Small has lost three of his toes to diabetes.
His disease is epidemic in Indian Country, afflicting a quarter of the population.
“In 1998, they told us with a high influx of diabetes in Indian Country, we’re headed for a train wreck if we don’t address it,” says Alvin Windy Boy, who was chairman of the National Tribal Leaders Diabetes Committee from 1988 to 2005. “Certainly, in seeing the numbers, we are headed for a train wreck, if we’re not there already.”
In 1998 the Chippewa Cree tribe was three years into a self-governance compact, which allowed the tribe to operate programs formerly run by the Bureau of Indian Affairs. Windy Boy, a former tribal council member, says it gave the tribe flexibility to direct federal money funneled through the BIA into programs that needed it most.
Before that compact the tribes were at the mercy of the Indian Health Service and the BIA, Windy Boy says.
“When one grows up as a child, we depend on mom and dad to provide for us, to give us that direction,” he says. “That’s what the Indian Health Service and BIA were doing for my people.”
But in 2005 the tribe handed contract health services back to the federal government because the escalating cost of health care left the tribe entangled in a financial morass, resulting in a $1.7 million debt. Under contract health services the tribe is given a lump sum to pay for medical services tribal members must receive off the reservation, in facilities like those in Havre and Great Falls. However, the need for health care services far exceeded the allotted money.
“We were never funded adequately in health,” Windy Boy says.
Rocky Boy’s is home to about 2,500 members of the Chippewa Cree tribe. It was established in 1916, the last of Montana’s seven reservations to be formed. The reservation has been plagued by poverty and its unemployment rate averages 66 percent, more than 10 times the state rate. It is also the fastest-growing reservation in Montana, and by the year 2015, a projected 10,000 to 12,000 people will live within its borders.
In these conditions, the tribe was faced with a dilemma: continue operating under the control and supervision of the Bureau of Indian Affairs, or break free of BIA reins and attempt to stand on its own.
Brian “Kelly” Eagleman, vice chairman of the Rocky Boy’s Health Board, thinks that compacting was a good move.
“Personally, I think we saved a lot of lives by compacting, because we got to be a little bit more creative budgetary-wise, a bit more flexible within the way we provide the service,” he says. “Within the federal system, you always had Big Brother looking over you.”
Now in 2007, the tribe has taken out a loan to repay the debt. Eagleman says they’re back on track, and the tribe has resumed control of contract health services. In order to stay within the budget, Eagleman says the tribe will adopt the rating system used by the Indian Health Service to ensure emergency needs are met. He says if the need arises, the tribe will begin the process of asking medical providers to come to Rocky Boy’s, rather than sending tribal members off the reservation to medical facilities.
Since taking control of health care, a few things have changed. The tribe has now begun incorporating cultural healing into medical practices, which some tribal members believe physicians would previously have misconstrued as quackery. The tribe has also chosen to allocate more money to health care services, whereas before a large portion of those funds were used for administrative costs.
The tribe also plans greater emphasis on preventing diseases like diabetes and cancer. It is coordinating an effort with Benefis Healthcare’s Sletten Cancer Institute in Great Falls to try to get more Native Americans to get cancer screenings. But perhaps the most concrete of Rocky Boy’s improvements is a health care clinic whose doors opened on March 28.
The 56,000-square-foot Na-Toose Clinic, named after a late medicine man, is twice the size of the old clinic. Clinic CEO Fawn Tadios says the old clinic was too crowded. “We were on top of each other,” she says.
The $13 million facility was built by the tribe in hopes of improving service to people not only on Rocky Boy’s, but at the adjacent Fort Belknap Reservation (could be linked to Alex’s story) as well. Housing and Urban Development, the Indian Health Service, tribal money and loans funded the new building.
“It’s very disappointing that this facility wasn’t paid with a lot of federal dollars,” Eagleman says. “The tribe did it on its own,” he claims, adding “had we waited for the system to build it, we’d probably still be waiting.”
Health programs such as the chemical dependency program were previously scattered throughout the community. Now they are all under one roof. There is a room for group counseling, with the 12 steps listed on one wall. Diabetes programs are offered at the clinic, complete with a kitchen where people prepare meals for diabetic patients. The dental facility is three times its former size. The radiology department and lab are entirely digital. But the new clinic, like the old clinic, still focuses primarily on basic treatment for coughs, colds, and everyday bumps and bruises. People with major medical emergencies are forced to find treatment off the reservation.
It still lacks a pediatrics and geriatrics ward, something the tribe hopes to have someday. And although technology has been updated, particularly in the radiology department, there is still something lacking from this new building: a dialysis unit.
Windy Boy says he has never favored a dialysis center because he believes it only puts a bandage on the problem. By creating a dialysis unit, he asserts, health administrators are saying diabetes is OK rather than trying to work to prevent it. Eagleman agrees.
Small will have to keep waiting for a dialysis unit on Rocky Boy’s, but he says that’s not a problem. After all, he’s been waiting for something his whole life. Whether it is waiting to see a doctor when he makes his appointments at the Rocky Boy clinic three times a year, or waiting 45 minutes for his prescriptions to be filled. He waits. Whether it is waiting for the van to pick him up and drive him to Havre, or waiting for his dialysis to be done. He waits. And now, he is on a waiting list for a kidney transplant, waiting for the moment when his name is called and this life of dialysis and diabetes can perhaps be a thing of his past.
“The doctor told me it would be in the near future,” Small says.
Small waits, and hopes that the future is now.
He wasn’t scheduled to go to Havre that day. It was the evening of March 27, 2007, a Tuesday. But Small began to have severe chest pains and feared something was wrong with his heart. At about 8:30 p.m. an ambulance arrived at the small, white house with red trim, icicle Christmas lights still dangling from the roof. The ambulance made the rainy drive to Havre, where Small spent the night. It was a trip he wasn’t supposed to have made for another nine hours.
The following morning, during the second hour of his dialysis, the process would need to be interrupted. An X-ray technician arrived at Small’s cubicle with a wheelchair. It was time to take him for a CAT scan, to try to figure out why Small kept having chest pains. If the test results came back abnormal, Small says, he would have to go to Great Falls and have a stent put in his heart. He would later learn, however, that the chest pains were merely the result of an anxiety attack.
After the tests were complete, it was back to dialysis. The process would take about 30 minutes longer today, because now the machine would need to pump the dyes used in X-ray out of his system. Small says doctors told him he would stay in the hospital for a couple of nights, so if anything were to happen he would already be in Havre.
Small is quiet at first, but chooses to forego his usual television watching in order to visit. It isn’t long before he is telling stories and poking fun at his nurses, Alayne Bickford and Doug Braun, a man he affectionately calls “Dougy Doug.” As Small smiles, his brown eyes hiding from behind glasses form into tiny slits, dropping at the outer corners. His full lips open slightly and reveal pink gums in a mouth vacant of teeth, not uncommon in people with diabetes.
The most difficult thing for Small throughout diabetes has been his adjustment to a different diet. There aren’t many fruits diabetics can eat, and Small particularly misses bananas. He says he didn’t eat well before his diagnosis.
“I used to eat a lot of heavy stuff, like chips and fast food,” he says.
Small says his health has gone downhill since 2000. Small also relies on friends and his faith to get him through, and goes to church regularly.
“I pray to God to help me with this,” he says.
Small handles his disease with a warrior’s bravery and optimism that he will one day defeat his diabetes before the disease defeats him. It may have taken a toll on his body, but he has not allowed it to control his mind: He strongly believes he’ll get better.
Small wants that more than anything, but for selfless reasons. He wants to tell his story in hopes of preventing more people from being diagnosed with the disease that has plagued him for 17 years.
“I’ve got two people that are going to be helping me make a brochure of myself to make copies to send to different reservations,” he says. “I want to go from college to college, reservation to reservation, and talk about my diabetes and my dialysis.”
People on Rocky Boy’s are already focusing on prevention. The Wellness Center, which opened in February 2006, was designed partly with diabetes prevention in mind.
“Diabetes is so devastating,” Eagleman says. “It’s sad actually; I mean it’s preventable. I would hope that we get our people who are diabetics or potential diabetics over to our Wellness Center so that they could exercise.”
Next to the new clinic, in the Wellness Center, a basketball tournament is getting under way. Kids in kindergarten to second grade fill the court, teams of boys and girls bouncing basketballs. One team wears neon-green jerseys, the other blue.
Mike Sangrey, director of the Wellness Center, will be refereeing the game, although he’s mostly cheering them on. He gives one of the girls on the blue team a high-five after she makes a basket during warm-ups. Parents who have come to watch fill the bleachers, and people laugh as the kids run around with the ball, forgetting to dribble. But it’s OK to travel — what matters is that the kids are moving. The tournament was organized with less emphasis on the fundamentals of the game, and more emphasis on exercise. Childhood obesity is one of the factors that can lead to diabetes later in life, and Rocky Boy’s has started to see an influx of diabetes in the younger population, striking people in their teens and 20s.
“I’d rather that we do a preventative-type health approach and get more people exercising,” Eagleman says. “That’s the whole intent of the Wellness Center. That’s kind of our focus for the future.”
The facility offers numerous activities in order to keep kids active instead of sitting on the couch playing video games.
“What we need to do is start concentrating on these young kids,” Windy Boy says.
The facility is complete with a fitness center, Olympic-sized swimming pool, saunas and courts to provide people of all ages on Rocky Boy’s a place to stay in shape. The Wellness Center also has a staff that specializes in diabetes prevention, complete with nutritionists who offer advice on fitness and healthy diets. They also organize programs where people can come have their blood tested.
“It’s saved some people,” Sangrey says.
Perhaps programs like these can prevent diabetes from becoming a much bigger problem than it already is. But for people like Small, it is too late.
“I’ll be going through this the rest of my life,” Small says. “At least until they find a kidney donor.”
Despite recent improvements at Rocky Boy’s, Windy Boy says health care is still a work in progress.
“Rome wasn’t built in a day,” he says, “and Rocky Boy’s wasn’t built in a day neither.”
