In Alaska Native villages and across communities of color, the enduring silence of grief

Sickness and death were familiar companions of Thecla Xavier long before the arrival of the coronavirus in Alaska’s Yukon-Kuskokwim Delta.

Her mother had 12 children. Except for her, each got sick and died — two before age 25, and one at 33 — and now, the 64-year-old is the only one alive. Pneumonia tried to take her son, Joe Xavier, when he was a baby, leaving the infant deprived of oxygen and in and out of hospitals until he was about 3. But years later, it was COVID-19 that would ultimately claim him.

“Those elders, a long time ago used to say, ‘The world’s going to change. It is changing. Listen to the world when sickness, any kind of sickness, comes around,’” Thecla Xavier said. “I didn’t notice that until one morning last year I went out, and not a sound. No crows. No seagulls. No little birds. No dogs barking. Nothing.”

In the last 20 months, COVID-19 has killed three-quarters of a million people in the United States, meaning an estimated 6.7 million Americans are grieving the death of a grandparent, parent, spouse or child because of the coronavirus, according to researchers.

But the nation’s bereavement burden has never been equal, and the coronavirus is no exception, targeting Black, Latino, and American Indian and Alaska Native people in their 30s, 40s and 50s with deadly efficiency.

Through the first half of the year, among people 40 to 64 years old, COVID-19 has killed:

One out of every 240 American Indian and Alaska Native people. One out of every 390 Latinos. One out of every 480 Black people. One out of every 1,300 Asian people and white people.

In Alaska, with the most Native American people by percent of any state, Indigenous people represent 16% of the population but 28% of COVID-19 deaths, according to the state’s most recent figures. White Alaskans, by comparison, represent 65% of the population but 48% of COVID-19 deaths.

The coronavirus was slow to come to the Yukon-Kuskokwim Delta, home to more than 25,000 people — most of whom are Alaska Native — living in 58 villages not connected by roads. But after it did, the tribal health organization urged villages to go into a month-long shutdown last November.

For families such as Thecla Xavier’s, the silence lasted for months.

As Joe-Joe, that’s how Thecla Xavier’s son was affectionately known, patrolled the streets of Pilot Station, Alaska, ensuring people stayed home and didn’t mingle during the pandemic — silence.

As he hopped in his boat and went upriver to fill gunny sacks with punks, clam-shaped fungus that grows on birch trees and is used to make a supercharged chewing tobacco that many consider as much a part of traditional Yup’ik life as moose-hunting and salmon-fishing — silence.

Joe Xavier was a man who loved knocking down wildfires in Alaska and the Lower 48, and volunteering as the village groundskeeper, clearing brush near elders’ homes and cutting grass at the cemetery. For years, he helped his brother cut holes in the frozen river and set fishing lines in the icy water below. But last November, the man with boundless energy was feeling achy and needed to rest, so he didn’t go.

Five days later, COVID-19 killed him at age 37 and nearly killed the youngest of his four sisters.

Still, the silence endured.

“It was so quiet,” their mother recalled.

Deaths from COVID-19 are causing gaps in grief — gaps that are tragically familiar: Black, American Indian and Alaska Native communities suffer a higher bereavement burden given persistent disparities in life expectancy and mortality.

Native Americans, along with Black Americans, live shorter lives than all other Americans — 78.4 years for Native Americans vs. 80.6 years for white people. For Alaska Native people, life expectancy is 70.4 years, according to the Alaska Native Epidemiology Center.

The shorter life spans reflect a broader disparity: Native Americans have much higher rates of obesity, diabetes, coronary heart disease, chronic liver disease and tuberculosis than white people do.

Yet the gap in grief — with its own health consequences — is often overlooked.

“This population, they’re experiencing loss on top of loss on top of loss,” said Debra J. Umberson, a sociology professor and director of the Center on Aging and Population Sciences at the University of Texas at Austin. “It’s the multiple losses, those repeated hits, that really take a toll.”

[Hundreds of Alaskans have died with COVID-19. We know little about them.]

Umberson had spent her career researching how relationships between friends and family affect health and how the loss of those relationships influences health, writing a book in 2003 about the effect on adults when a parent dies.

But the course of her research changed nearly a decade later with the death of Trayvon Martin, a Black Florida teen killed by a man of white and Hispanic heritage. The death of a child is one of the most devastating experiences someone can go through, and she said “watching Trayvon’s parents and just seeing how the grief was affecting them got me to wondering” if Black parents were more likely to lose their children than white parents.

“I just started trying to look up the statistics. I figured they were out there,” she said. But when she looked, she couldn’t find data chronicling how some groups were hit more heavily by bereavement than others.

“So I decided to go out and figure it out for myself with the best data I could find,” Umberson said.

What she found was that Black Americans are at greater risk of experiencing the death of a mother, father, sibling, spouse and child than white Americans — and they experience those losses earlier in life.

Black children are more than three times as likely to lose their mother by age 10. Black parents are 2½ times more likely to lose a child by age 30, a gap that nearly doubles for Black parents as they age. Black adults between 50 and 80 are four times as likely to lose a child. Black couples are more than twice as likely to lose a spouse by age 60.

Black families are also more likely to experience multiple losses. By age 30, Black people are three times more likely to experience the loss of two or more family members. By age 60, Black people are twice as likely to have lost at least four family members.

“We actually wanted to include Native populations when we were looking at the unequal burden of loss, but it’s harder to get good data,” Umberson said of her findings, published in the Journal of Health and Social Behavior in 2017. “But the statistics on mortality and life expectancy, if you look at those and you extrapolate, they’re going to be even worse for Native populations.”

Numerous villages in Alaska have no road access, no running water or sewage service, no neighbors for miles. A gallon of milk can cost more than $10. Yet the median household income in the area, though it varies by village, is as low as $32,750. Hunting and harvesting help people survive.

“For Native people, we’re used to people dying around us. That shouldn’t be normal. But it is,” said Abigail Echo-Hawk, executive vice president at the Seattle Indian Health Board and director of the Urban Indian Health Institute.

“We’re Native people living in a country that has been attempting to eliminate us for more than 500 years,” Echo-Hawk said. “This ongoing, generational grief is what we call historical trauma within communities. We’re seeing that right now.”

The coronavirus has created a new generation exposed to unimaginable loss. One out of every 500 children has lost a parent to the pandemic, a figure that varies widely when broken down by race and ethnicity:

One out of every 168 American Indian and Alaska Native children has lost a parent to COVID-19. One out of every 310 Black children. One out of every 412 Hispanic children. One out of every 612 Asian children. One out of every 753 white children.

There have been chasms between the health status of Indigenous people and others since European settlers arrived in the Americas more than 500 years ago. Colonizers, missionaries and public health experts have, over the years, invoked wide-ranging causes that often blamed the victims in the name of land theft and genocide — divine providence, genetics, unhealthy behaviors, unclean living conditions, a failure to adapt.

In the beginning days of the pandemic, Echo-Hawk’s health clinic was sent body bags instead of personal protective equipment, known as PPE. It was, she said, emblematic of what American Indian and Alaska Native communities experience.

“They’ll give us things to bury our people in but not the things to ensure they live,” she said. “We’re tired of body bags.”

It has been nearly a year since Thecla Xavier sat by her children’s bedsides at the village health clinic. Her Joe-Joe arrived on a slushy, slippery and windy November day. He was breathless and panting, the virus suffocating the red blood cells that deliver oxygen. Blood oxygen levels below about 90% are cause for concern. His family said his fluctuated between 30 and 50%.

A day later, his 33-year-old sister, Nastasia, who has two young children, checked into the clinic, her health deteriorating. The weather was too bad for planes or helicopters to land, so they were forced to wait until conditions improved. And they did — hours after Joe took his last breath, at 1:25 a.m.

“We had to put him in a bag. No coffin. Just put him in a bag with his same clothes,” Thecla Xavier said. “We couldn’t bring him home. We couldn’t change him. We couldn’t pray for him.”

He was buried that evening.

It was so quiet, almost too quiet. Thecla cried until she could cry no more, saying, “I had no regrets for him.”

While mourning her son, Thecla prayed she wouldn’t have to bury her daughter, who was urgently transferred on a medical aircraft “after my Joe went.” Nastasia first was flown nearly 90 miles to Bethel, then Anchorage and finally Seattle, where she remained in intensive care for 50 days as multiple organs began to fail. Her heart. Her lungs. Her kidney.

Then, miraculously, she recovered.

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The death of a family member is one of the most stressful events most Americans will experience. The trauma of loss sets in motion a host of reactions that conspire to trigger dysregulation of body systems. Changes in financial status; loss of health insurance; moving; switching schools; self-soothing through food, drugs, alcohol; and hyper vigilance about what’s to come. They pile on top of each other, taking a toll.

It’s an experience researchers say most Americans rarely encounter until midlife or later. That’s not the case for Black Americans, American Indians and Alaska Natives.

Mothers and fathers. Sons and daughters. Brothers and sisters. Husbands and wives. Grandparents. Gone. And the coronavirus is amplifying a burden that was already too much to bear.

Limited research shows experiencing multiple losses — the repeated shock to the system — can lead to stress so corrosive it changes bodies.

[How does a pandemic start winding down? You’re looking at it]

Stress is a physiological reaction, hard-wired. At the first sign of danger, the brain sounds an alarm, setting off a torrent of neurological and hormonal signals that flood the bloodstream. Overexposure to those hormones wears down the body, causing it to become sicker and age quicker, or “weather.”

The pandemic “is a weathering event,” Thomas A. LaVeist, dean of the Tulane University School of Public Health and Tropical Medicine, said.

It was Cynthia Ivan’s mother who died first, just before the pandemic began. Then COVID-19 took her grandmother, grandfather and cousin a year later. And just last month, her uncle from cancer. But all of it feels like a blur to the 35-year-old.

Ivan’s mother died in November of 2019. She’d been kicked out of a motel in Bethel where she was drinking with her husband, her daughter said. It was the middle of the night and temperatures were well below freezing.

A year later, like many villages in Alaska’s Yukon-Kuskokwim Delta, theirs, Akiak, didn’t lock down during the early months of the pandemic. So, she said, when there was a death — not from COVID-19 — the entire community gathered as it traditionally does. Then came time for the one-year memorial feast for Ivan’s 61-year-old mother.

“Shortly after, there was a positive case, and I was like ‘Good, Lord! The whole village is going to be positive,’ " Ivan said.

And it nearly was. Two days before her 84-year-old grandmother, Lucy Ivan, died, the village and the Yukon-Kuskokwim Health Corp. determined there was widespread community transmission of the coronavirus. Lucy Ivan died of COVID-19 in November at home, cared for by her sons and daughter, all of whom had COVID as well.

They were the ones who handled her body, placing her in two body bags that came with instructions. They placed her in a coffin, nailed it shut, carried her out of the home, drove her to the cemetery.

Her children and grandchildren who didn’t live in the house had just a two-minute visit to see her, clad in full protective gear.

There was no wake, no funeral. The pastor did the burial on speaker phone.

“When an elder passes, the elder takes with them all their traditional knowledge that they’ve carried with them all their life,” Ivan said. Her grandmother took the secret to preparing porcupine. “I couldn’t handle the smell,” she said of the prickly creatures.

But more than that, her grandmother’s death meant the loss of something more existential, Yuuyaraq: “It’s the way of a human being, or how a person should be,” Ivan explained. “From when we’re very young, we’re taught how to be a person, how to respect a person. It’s not something you can be told. You have to watch how she loved.”

The absence of that love made Ivan numb. Her aunt asked her to share their experience on Facebook, hoping to spare others from the numbing pain. Alcohol helped her cope. She spent the next month drunk, losing nearly 40 pounds and ending up in the hospital twice. Her blood pressure spiked. Her heartbeat became irregular.

She didn’t get to say goodbye to her grandfather, who she said mushed in the first Iditarod and died of COVID-19, because she was drinking.

“My mom and then my gram’s deaths really did something to me,” she said. The pleading tears of her 19-year-old sister helped pull her back from the brink.

The human body isn’t designed to withstand such biological and emotional assaults.

“These are the types of traumas that chip away at your resilience,” LaVeist said. “And people of color have to be more resilient because we face more trauma.”

But the well of resilience is only so deep.

“If you’re constantly dipping into that well, sooner or later that well runs dry,” he said.

The coronavirus is adding death and disrupting death rituals. Compounding the trauma is the gruesome nature of the disease, which spares none of the body’s systems in severe cases.

Ashton M. Verdery, associate professor of sociology and demography at Pennsylvania State University, said he has a paper going into review that analyzes survey data on 50,000 Europeans collected as the pandemic began surging. It includes people whose loved ones died of COVID-19 and from reasons other than the virus.

“Our results do suggest that it is the case that COVID deaths are likely affecting people more strongly, which would suggest that this could create some longer downstream health challenges,” he said.

Cynthia Notti was with her little brother when he took his last breaths Aug. 30 at Fairbanks Memorial Hospital. She’d driven in from Anchorage, staying several days, and when she left, her brother was still talking. She flew back a day later, and the situation had changed.

“The nurses said, ‘We need to warn you about what you’re going to see,’ " she said. “When I walked in, he already had the rattle. Short breaths.”

Notti called her 88-year-old father right away and gave him the news: The oldest of his five sons was going to die. He started to cry.

“The last time I saw him crying was when my grandmother passed away — and that was 2003,” she said.

Then, she put the phone up to her brother’s ear, so their father could say goodbye to his 54-year-old son, Joseph Notti.

She was there when her brother’s wife told their four children, the youngest just 14.

They cremated his body, she said, because the village where he wanted to be buried was on shutdown. Tyonek, Alaska, is where his wife of more than 25 years grew up. It’s where they met. It’s one of the places where the man with a heart for service worked as a village public safety officer.

A service was held in Fairbanks where Notti lived with his family, with plans to scatter his ashes in Tyonek another time.

“I did the eulogy for Joey’s funeral, and I said Joey’s not alone,” his sister said in a recent phone interview on the sixth anniversary of their mother’s death from a stroke. “I just know they are up there playing Scrabble with my grandmother.”

Each family member is dealing with Joe Notti’s death differently. His wife, who still expects to get her regular 4 p.m. text message from him, is mad her unvaccinated husband didn’t take his symptoms more seriously. Cynthia Notti’s father visits more often and stays longer.

A week after her 14-year-old nephew lost his father from COVID-19, his best friend’s father died, too.

“We still can’t wrap our minds around it,” Notti said.