MILWAUKEE, Wis. — It is 5 degrees below zero and a light powdering of snow swirls across the roads of Vernon County. A few horses and buggies clop through the chill morning air, but Perry Hochstetler leaves his buggy at the family farm and has a driver take him to his doctor’s appointment.
The Hochstetlers are Amish. With no health insurance and a modest income, they cannot afford most doctors.
They can afford James DeLine, once the lone doctor in the western Wisconsin village of La Farge. Population 750.
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When he became the village doctor in 1983, DeLine had no experience treating the Amish and no idea the crucial role they would play in his work. Today, about 20% of the doctor’s patients are Amish or Old Order Mennonite, part of a Christian population called Plain People. They are known for their separation from the modern world and adherence to a simple lifestyle and unadorned dress.
Something of a throwback himself, DeLine, 65, is a short, bespectacled man with a walrus mustache, a doctor who carries a brown medical bag to house calls. For years, he carried his equipment in a fishing tackle box.
He knows the families on every local farm and their medical histories. He knows who’s been born, and calls on the mothers and infants to make sure they are healthy. He knows who’s dying, and looks in on them in their final days, sitting by their bedside, talking in a gentle voice, making sure they have what they need for pain.
As a young doctor, DeLine never imagined he would find himself someday with one foot planted solidly in medicine’s past, the other in its future.
The doctor who makes house calls also collaborates with English and American geneticists studying some of the rarest diseases on Earth. Some occur at much higher levels among the Amish, Mennonites and other closed communities that don’t allow marriage to outsiders. This prohibition increases the likelihood that when a rare, disease-causing mutation appears in the community, it will take root and pass from generation to generation.
It has taken DeLine and his staff years to gain the trust of Plain People, some of whom are wary of medicine and technology. Often, they fear that going to a hospital or clinic will mean surrendering the decision-making to doctors who neither respect their beliefs nor understand their financial limitations.
DeLine, not a religious man himself, accommodates the beliefs of patients and parents; he has always viewed them as the ultimate decision-makers.
At first glance, Hochstetler seems an unlikely candidate for a rare disease or a health problem of any kind. Work at the local sawmill and his family farm has given the 26-year-old father of two a lean muscular frame. Beneath the skin lies another story.
“He has the vasculature of an 80-year-old smoker,” DeLine says.
He inherited the genetic mutation that causes an illness most people have never heard of: sitosterolemia. Only 100 cases have been described in the medical literature, but DeLine has 13 patients with the condition, including four of Hochstetler’s 10 siblings and their father.
The disease prevents the body from getting rid of lipids from vegetable oils and nuts, causing them to build up and clog the arteries.
Since diagnosing the disease, DeLine has treated Hochstetler with a cholesterol-lowering drug called Zetia.
Without diagnosis and treatment, Hochstetler could by now have suffered a heart attack, a trauma that Zetia should delay, though for how long is uncertain. There is no cure for sitosterolemia.
“I’m not afraid,” he says. “If I die young, I guess I’m going to die young. I can’t do much about it. I can’t say I ever get low and have the blues about it.”
The road to becoming a country doctor
A blizzard almost kept the doctor and village from their appointment.
It was February 1983. DeLine drove his family over hilly country roads, staring out the windshield into flurries and fearing their car might not make it to La Farge.
DeLine had just completed his residency at the Wausau Hospital Center. Now, a 10-member committee of locals was recruiting him to fill La Farge’s vacancy for a doctor. The village had been without one for a couple of years.
The doctor liked the friendly villagers, a welcome change from the suit-and-tie types he’d interviewed with in other places.
He was 28 years old with a bad car, a growing family and $30,000 in unpaid student loans. The average salary for a family doctor in America was then around $80,000, enough to settle down and begin paying off his debt.
But the people of La Farge wanted DeLine — needed him. Their offer: $20,000.
That would have to cover DeLine’s annual salary, the salary of an assistant to answer the phones and handle billing, plus all the clinic equipment and expenses. .
DeLine took the offer.
Medical school was 'meant to be'
DeLine grew up in New Lenox, Illinois, a farming community outside Joliet.
The village of 1,750 was mostly cornfields. DeLine remembers it as the kind of place where children grew up building forts during the day and watching bonfires at night. DeLine had twin sisters five years younger than him. Their father owned a restaurant.
From an early age, though, “it just seemed like I’d be going to medical school. It was meant to be.”
DeLine remembers nights when he could hear his mother struggling to breathe. He could hear his father, too, trying to persuade her to go to the hospital.
She had rheumatic heart disease and took blood thinners starting in her 30s. She sometimes joked about needing “a valve job.”
DeLine was 17 when his mother went in for the procedure.
He saw her once after surgery “but I didn’t like how she looked.” About the third day, his mother suffered cardiac arrest. She was resuscitated but had sustained a severe brain injury. Days later, the family shut off life support. She was 42.
One week after her death, James DeLine set out to become a doctor, leaving home for the University of Illinois in Urbana-Champaign.
A demanding schedule
University life was hard. DeLine remained so mired in grief that when he ate, he suffered terrible abdominal pain and had to lie on his stomach for relief.
Still, he took on a demanding schedule. Driven students tended to enter the more advanced honors program in either chemistry or biology. DeLine, a physiology major, enrolled in both.
He paid for college through restaurant jobs and financial aid.
He went on to medical school, first in Champaign, then at the University of Illinois campus in Chicago. He lived in the city’s Little Italy section on the near west side. There he met his future wife, Ann Doherty, who worked in a print shop.
DeLine graduated from medical school on June 7, 1980. The next day, he and Ann married.
A week later, he started his residency in Wausau.
He would work a 24-hour shift, take 24 hours off, then head back for another 24 hours at the hospital. “By the time I’d stagger home for some rest,” he says, “I was sleep-deprived, hungry, with a headache.”
The schedule bothered his wife. She missed him. In his next job, she would see even less of him.
On call 24 hours a day
In La Farge, DeLine worked harder than he had in his residency.
He was on call 24 hours a day, seven days a week. To make ends meet, both for his family and the clinic, DeLine worked five shifts a month in the emergency room at Vernon Memorial Hospital in Viroqua.
Some days he would work 9 a.m. to 5 p.m. at the clinic, then drive to the hospital and work 6 p.m. to 8 a.m. in the emergency room. He would return to the family’s home just in time to shower and get to the clinic by 9.
“There were times when he was tired, but it didn’t slow him down,” Marcia Bader, his now-retired office manager says. “It was that deep-seated caring that kept him going.”
It was his wife, Ann DeLine, too.
The woman who had dreamed of being a mother did everything for the couple’s four children, all born within a five-year span. She washed cloth diapers and hung them out to dry. She cooked, cleaned, took the children for walks, helped with school and play, and accepted with grace all the times when her husband was called away from holidays and birthday parties.
"The calendar of holidays does not apply," she says. "He helps people when they need him — like the volunteer fireman races off when the alarm sounds; like the farmer plants and harvests when the ground and weather are ready."
"Life is lived by needs, not calendars and time slots."
A fixture in the community
Villagers embraced their doctor. Patients said they were accustomed to physicians who talked at them most of the time; DeLine listened.
The clinic struggled financially in the early years. “Not everybody paid their bills,” Bader recalls. “But the doctor wasn’t going to send them to collection firms, and he wasn’t going to stop caring for them.”
The doctor and his wife became fixtures of community life. They went to their children’s cross country meets and other school events. They attended the annual Kickapoo Valley Reserve Winter Festival.
But it was his presence in the homes of area residents that endeared him to them.
“My father was diagnosed with colon cancer in 1994. The thing that always struck me was that Dr. DeLine stopped in to see my mom and dad one night after a basketball game,” recalls Bonnie Howell-Sherman, editor and publisher of the weekly Epitaph-News in nearby Viola.
“That was just unheard of. … My mom is going through dementia now and out of all of the people she’s met since she’s been here, he’s the one she remembers.”
The doctor's turn for illness
The villagers didn’t just like DeLine. They depended on him.
They worried about him, too.
“There’s been two things about Dr. DeLine that the whole community has been concerned about,” Steinmetz said. “One was, how do we keep him? The other was that he stay healthy.”
From time to time, rumors spread that the doctor was sick, even dying.
In 2007, DeLine had noticed a problem. He would urinate, only to discover a short time later that he needed to go again.
It was prostate cancer.
Courtesy of the Viola Epitaph-News
Feeling, as he put it, “reflective, maybe anxious too,” DeLine approached the Epitaph-News editor. He asked to write a series of columns for the newspaper describing his illness and treatment. He would counter the rumors with transparency. He called the column, “From the Other Side.”
“I decided early on that I was comfortable sharing my experience with our community,” he wrote in the first column. “After all many of you have shared your concerns, fears and symptoms with me for nearly 25 years. … Each of us knows that our turn must come for illness and eventually death.”
He discussed his fears about surgery to remove his prostate — “Would I be able to jog again?” He even shared the frustration of phoning to make a doctor’s appointment and going through endless computer prompts before reaching a live human voice.
His columns took readers through his surgery, recovery and return home.
The way the whole village shared the doctor’s illness and treatment, “that’s part of small-town life,” explains Howell-Sherman, the newspaper editor.
It’s been 12 years since DeLine’s surgery. The cancer has not returned.
Earning the trust of the Amish
Of all the relationships the doctor built in La Farge, the most challenging involved his Amish patients.
DeLine found his medical work was affected by a deeply held principle among the Amish, expressed in the German word gelassenheit, which means yielding oneself to a higher authority. Among the Amish, the word encompasses a calmness and patience, as well as a belief that individualism must take a back seat to the good of the community and the will of God.
While some Amish visit hospitals and accept modern medical techniques, others prefer natural methods and traditional treatments: herbs, vitamins, supplements and home remedies. In the La Farge area, it is not unusual for an Amish family to turn to these methods before deciding to see DeLine.
Such was the case with Abie and Edna Yoder when their 8-year-old daughter, Barbara, first grew sick in spring 2015.
The girl had little appetite and suffered from a terrible stomachache and bloody diarrhea. Barbara weighed 38 pounds — 19 pounds below average for an 8-year-old.
The Yoders took her to a so-called “non-traditional doctor” used by some of the Amish; these tend to be herbalists, specialists in natural medicine and others, all of whom lack medical degrees. He viewed her blood under a microscope and told the family she might have colon cancer.
The parents worried terribly about their daughter’s survival, but worried too about putting her in the hands of a traditional doctor. The scenario that haunted them had happened to a 3-year-old Amish boy with leukemia. The boy was given chemotherapy, they say, despite the excruciating pain and ultimate failure of the treatment.
“He begged to be released to go to Jesus,” Edna Yoder recalls.
The Yoders approached a midwife, who sent her husband to speak with DeLine. The husband explained to the doctor the circumstances and the family’s hesitation. Then the Yoders brought their daughter.
"Dr. DeLine made it really clear that he would respect our wishes,” Edna Yoder recalls.
Their daughter was admitted to American Family Children’s Hospital in Madison. DeLine consulted with a pediatric cardiologist he’d worked with at UW, Amy Peterson.
“Dr. DeLine had noticed that she had interesting looking bumps on her arms and on her legs,” Peterson recalls. “They were deposits of cholesterol. Dr. DeLine and I started thinking along very similar lines very quickly.”
Genetic testing confirmed their hunch. The girl had extremely rare sitosterolemia, the same illness that would later be diagnosed in Perry Hochstetler.
Treatment lowered the girl’s sitosterol levels and helped her gain weight.
DeLine and Peterson have since found among the local Amish a dozen other cases — the second largest cluster of the disease in the world.
Encountering nature's cruelest illnesses
Almost 200 diseases are found in much higher proportions among Plain People. Scientists have developed a special Amish genetics test that screens the blood for more than 120 of them.
DeLine has seen patients with more than 30 of the diseases on the test and has at least two patients with diseases never described in medicine.
Across the globe, there have been only 20 to 30 cases of a disease called BRAT1; DeLine has seen six. Babies with the illness are born rigid and are prone to frequent seizures.
“When the baby is born you can’t straighten the baby,” DeLine says. “The eyes are jerking, face twitching. Some moms say they have felt things that suggest the babies have been seizing in the womb.”
There is no cure for BRAT1. Afflicted babies die within months. “But if we can identify it,” DeLine says, “the family can take the baby home and they take great care of the baby until the baby passes away, and they don’t spend five farms' worth of money.”
Help from geneticists from England
On another spring morning, 50 Amish and Mennonites gather at the La Farge Community Temple, a former Masonic Temple a few blocks from the clinic.
DeLine and his staff have brought together families with similar illnesses to hear from two of the clinic’s scientific collaborators studying these conditions: Emma Baple and Andrew Crosby, both geneticists from the University of Exeter in England.
To date, Baple and Crosby have identified 75 conditions that were new to medical science, of which 30 are found in higher levels in Amish communities. In a few cases, research into these rare diseases has reached the point where scientists are describing potential therapies.
“Our role is to support him and get answers for those families," Baple says. "Our great hope is that we can find something to mend or ameliorate the condition.”
Although there are no cures for the diseases discussed at the meeting, Amish families say they are glad to have a diagnosis instead of a mystery.
“We didn’t know what our children had until we took them to La Farge,” says John Yoder, a farmer (unrelated to Abie and Edna Yoder) who came to the meeting from Fairchild, a village of 550 more than 90 miles to the north. “We were just kind of up against a brick wall.”
Yoder’s son, Simon, one of 10 children in the family, is colorblind and experiences tunnel vision. The Yoders tried fitting him with eyeglasses, but the child’s sight kept deteriorating.
DeLine and his staff took blood samples three years ago when Simon was 14. Within a couple of weeks, the boy was diagnosed with Jalili syndrome. His younger brother Moses also has the disease. DeLine and his colleagues have found four others who have the illness, the first cluster of Jalili patients ever discovered in the United States.
John Yoder found the news that Simon and Moses had inherited the illness troubling.
“It kind of changed my opinion on marrying too close,” he says. “Me and my wife are actually related to each other. We’re second cousins. It happens a lot among the Amish.”
Lessons from the Amish
Over the years, DeLine and his staff have learned that the Amish families they treat view birth and death in ways that differ from much of the population.
Amanda DeVoogdt, a midwife in St. Paul, Minnesota before coming to work at the La Farge Clinic, says her first Amish birth four years ago was strikingly different from any she’d seen in the city.
“I’m used to giving a lot of verbal and emotional support during labor, talking, massaging,” she says. “I was kind of doing the same thing, and the Amish woman looked up at me and said quietly, ‘Shhh.’ It’s a lot quieter. … They are self-sufficient in their lives so much, and that carries over to labor.”
There are no bright lights in the birthing room. The women don’t request epidurals to dull sensation below the waist.
“The mothers are in a state of deep restfulness,” DeLine says. “It’s a wonderful thing to observe. It’s very important to help women to get to that place.”
The doctor says the same sense of serenity shapes the way Amish accept bad news, even death.
Months ago, he called on an older man dying from a lung condition. DeLine sat by his bedside and asked if the man wanted to go to the hospital.
“I think I’d prefer to go to heaven,” he said.
Four hours later, the man died.
“We — the Amish and I — come at it from different insights,” he says, “but the end result is the same. We must do our best in every situation, but we cannot expect that all things will go the way we would wish. So, we must come to acceptance.”
Follow Mark Johnson on Twitter: @majohnso
This article originally appeared on Milwaukee Journal Sentinel: Wisconsin rural doctor treats Amish, studies rare genetic diseases