“There was always something on fire,” she recalled.
The project was ablaze with violence. Before she had started kindergarten, she had seen someone killed in the streets. Her home life was marred by domestic violence and abject poverty. Her father struggled with his own hellfires of alcoholism and addiction. But he tried to provide as best he could, supplementing their meager income by hunting and fishing. They were perhaps the only family in the projects who regularly dined on lobster.
Fitzgerald herself was assaulted by another girl, who had snatched food from her hands. The incident sparked a street brawl, culminating with the girl’s grandparents breaking the window of their unit and trying to grab Fitzgerald’s mother.
“Right up through first or second grade, it was just daily compound exposures to unpredictable violence and lack of safety,” she said.
She rarely felt safe.
“It was dirty and scary and the violence was hard,” she recalled. “And I never felt like I belonged there.”
With four decades of time and nearly an entire continent between her and the projects, Fitzgerald still carries the traces of her traumatic early childhood. Despite working her way through college and graduate school, earning a stable living as a counselor and in a safe environment, the events of her past still affect her physical and mental well-being.
Fitzgerald is not alone.
A growing body of evidence is supporting what researchers first discovered 20 years ago, that adverse childhood experiences have a profound and long-lasting impact and can lead to both physical and mental health problems that can last a lifetime.
Increasingly, doctors are recognizing that the key to addressing some of the more common health conditions plaguing society could be in helping people process their early childhood trauma. In many communities, health providers and social services are helping affected patients build resilience which studies show can help counteract the effects of adverse childhood experiences.
“It’s been the iceberg issue in pediatrics and really in health care for a long time,” said Dr. Darin Vaughan, a pediatrician with Mosaic Medical in Bend. “The problem is enormous, and it has such a long term impact on an individual’s health and the generational health of families and parents. The impact of adverse childhood events has ripples for the rest of folks’ lives.”
The breakthrough research on adverse childhood experiences, or ACEs, came in 1998 when two researchers surveyed members of the Kaiser Permanente HMO in San Diego about their personal history of 10 potentially traumatic events before the age of 18. They found that two-thirds had experienced at least one of the 10 things like physical abuse, emotional neglect, parental divorce or having family members with addictions or mental health problems. Nearly 1 in 6 had experienced four or more.
But the researchers were stunned when they compared members’ adverse childhood experience scores to their medical histories. The higher the score, the more likely they were to have various chronic health problems. Those with a score of four or higher, were two and half times more likely to have chronic obstructive pulmonary disorder, hepatitis or sexually transmitted infections than those with a score of 0. They were 46 times more likely to have a drug addiction, 4.5 times more likely to have depression, and more than 12 times more likely to have suicidal thoughts.
At first the researchers thought the associations, while striking, could be explained by poor behaviors. Those who grew up in tough circumstances might be more likely to drink or smoke, and less likely to eat well or exercise. Over time, those behaviors could manifest in myriad health problems.
But when the researchers adjusted for those types of risk factors, the same pattern held. Patients with seven of more adverse childhood experiences who didn’t drink or smoke, who were not overweight, were still 3.5 times more likely to have heart disease than those with no adverse childhood experiences.
Others discounted the connection between adverse childhood experiences and health outcomes explaining it as the effects of poverty and a lack of access to health services. But the original study was conducted among Kaiser Permanente members, a solidly middle class population with good health coverage.
Over the years, the correlation has been reaffirmed by dozens of studies. In 2009, when researchers looked at the long-term outcomes of the patients in the original study, they found those with six or more adverse childhood experiences died an average 20 years earlier than those with no adverse childhood experiences.
Outside the bubble
By the time Fitzgerald was in second grade, her parents had decided the projects were too dangerous for their family. They moved the family to a safer neighborhood, squatting in a vacant apartment in a partially condemned building. At times there was no hot water, and they had to boil water on the stove instead. Fitzgerald and her siblings were told to hide if they saw a man in a red truck.
“I had all these fears that we were not going to make it outside of that bubble (of the projects), because we would see people leave every week, and then we’d see them come back at the end of the month,” she said. “I began to wonder, ‘Why are we so lucky that we were able to get out? What makes us so different? What will it take for us to stay out?’”
She made friends with the middle class kids in the neighborhood, and carefully examined their homes for any clues of what it took to make it outside of the projects. Two of her playmates had all of the Barbie dolls. Their father worked for NASA and had photos at home with the Challenger crew.
“So do I have to become an astronaut to get a house like that? I was trying to figure it out,” Fitzgerald said.
She wanted to learn, but comparing her life to theirs was an exercise fraught with shame and insecurity. Her family still struggled to put food on the table and to get decent clothes.
“There was always a sense of, ‘I’m gross and bad,’” she said. “Let me study these other people who are good, so I can get there someday.”
Eventually they moved to another apartment on the same street, where the landlord sold drugs. Her father’s drinking got worse. Her mother enrolled in night school, pursuing a degree in health care, and often took her children to class with her. At the age of 9, Fitzgerald sat in on her first psychology class.
“This guy is telling me important things. I’m going to take notes,” she thought to herself. “I’m going to help my family.”
The biological connection between traumatic events and health outcomes has been better understood in recent years, providing a mechanism by which such experiences can have long-lasting effects. When a person feels threatened, the body releases hormones, such as adrenaline and cortisol, that govern the flight or fight response. That response bypasses the frontal cortex, the rational thinking part of the brain, and engages more primitive reflexes that help us avoid danger.
But in a situation of constant stress, these pathways are activated over and over again, flooding the brain with neurochemicals that can have short-term gain but long-term damage.
Children are particularly vulnerable because their brains are still developing. The constant stress of traumatic events alters their brain structure and affects DNA transcription. Adverse childhood experiences, in essence, get written into a child’s genetic code. The toxic effects of chronic stress dampen the immune system and can cause chronic inflammation, which drives conditions such as heart disease or COPD.
Over time they develop a short stress trigger, where normal daily occurrences can send them into a high stress response.
“So even small stresses like paying your bills or just daily life is so stressful for people who have had trauma, and they think it’s normal,” said Dr. Christina Bethell, director of The Child and Adolescent Health Measurement Initiative at Johns Hopkins University. “When you have trauma you feel like a tiger is chasing you — you act like a tiger is chasing you even if it isn’t, just because it did at one time. And it’s very real what happens in the body and how it’s embedded.”
The past is not the past, she said, because your body holds on to it.
At 11, Fitzgerald spent Easter Sunday with grandparents and visiting relatives. She shared the car ride there with a family member who had sexually abused her for as long as she could remember. Fitzgerald’s parents had been working multiple jobs, often leaving the kids unattended at home or in the care of relatives. That gave her abuser access to her, and he threatened to hurt her family if she ever told.
It had started so early in her life, she thought it was just something that happened to poor people, that perhaps she was not a valuable human being. She felt like she didn’t matter.
“These sorts of things happen to people like us who are powerless,” she told herself. “I shouldn’t expect to be treated any other sort of way.”
But on that Easter Sunday, her abuser had become more aggressive. She rebuffed his advances and spent the entire car ride home terrified he would follow through on his threats.
When they arrived home, her mother was overjoyed to see her, asking about her day, the trip and their Easter baskets. She couldn’t hold her secret any longer and burst open in a flood of horrific revelations. Her mother screamed, “No!” Her father left the room. She recalls little else from that day.
Bethell said there’s a tendency to compare and rank different types of traumatic childhood events, considering some worse than others.
“The science shows over and over, it’s a cumulative score and it really is about how it impacted you, not what happened,” she said.
Oftentimes a big event like sexual abuse gets more attention and treatment, and particularly if it’s a one-time event, the child may be able to process that and move on.
“And so you’re actually better off than a person who has lived in a family where there’s mental illness, chronic alcoholism, divorce and emotional neglect,” Bethell said. “Now you would say, ‘Well, those are more benign.’ They’re not.”
The lasting impact of trauma, she said, is less about the event itself and more about the child’s experience of that event. And beyond that, it’s the impact of that experience, which could be vastly different depending on what sort of support that child had in dealing with it.
A step back
Fitzgerald’s parents divorced when she was in middle school. Without the spoils of her father’s hunting and fishing, food became scarce in their household. They lived in an empty apartment, the cupboards bare save a mismatched set of cups.
Fitzgerald and her sister shared a mattress on the floor at night. Her mother, who worked nights, would sleep on it during the day.
As the oldest, Fitzgerald had to take care of her younger siblings. Her mother would leave food and cooking instructions for her on the counter. One evening, she literally set a chicken on fire in the oven.
She and her brother joked about writing The Ghetto Cookbook, an instruction manual for how to make a meal from the random ingredients they might be able to scavenge at home. They had dropped another rung on the poverty ladder, and hunger became a constant concern.
Fitzgerald started babysitting for extra money, and when her pockets were flush, she’d buy an Italian sub, and split it three ways with her siblings.
One day, she was sent home from school because she was inappropriately dressed. She purchased a pair of stretch pants at a discount store and hated wearing them to school every day.
She found her escape hiding in the closet and reading: “The Canterbury Tales,” “The Lord of the Rings,” National Geographic. She loved the choose your own adventure books that allowed the reader to direct the story, one of the few things in her life she could control.
“It was a safe escape,” she said. “It made me feel powerful because I learned about the world.”
What change she had to spare, she gave to her siblings, often leaving her with nothing to eat at school. Her friends offered her food, and she was in no position to refuse it.
“I don’t want to be the charity case, but I’m really hungry,” she recalled.
Some health clinics now screen for adverse childhood experiences, sometimes asking patients or parents to identify all of the categories of traumatic events incurred as a child, sometimes just asking them for the total number of adverse childhood experiences. One study found only about 4 percent of pediatricians routinely ask about them. While the score helps health professionals identify what patients may need more than the standard medical attention, such surveys can also feel like ripping open old wounds.
A few years ago, MountainStar Relief Nursery, which seeks to help distressed families with very young children, started surveying parents about their own traumatic experiences as youth, finding an average score of 6.
“It was kind of traumatizing,” said Tim Rusk, executive director of the nonprofit. “It’s traumatizing for the parents and it’s traumatizing for the staff. If I tell you parents have an average of six ACES, you know what that means, but for our staff, when they find this out, what do they do?”
Bethell said adverse childhood experiences shouldn’t be used as a screening tool the way doctors measure blood pressure or cholesterol, but to provide an opportunity to open a discussion.
“Just to let the parent know that now we have a lot of science on the biology of stress and the role of relationships, and when they’re disrupted, what it does to the stress levels in our body,” she said. “And especially when we’re children, it can affect us all the way into adulthood.”
That can provide the opening for a parent to talk about the traumatic events the child has experienced or that the parent has experienced.
“Then the person is the one leading the conversation. You’re asking them and their own self-awareness guides them to what it is that can be done and is effective for them,” Bethell says. “We’re trained as doctors to have the solution. But if we start talking about it, we’re going to find a lot of people have their own solutions.”
Doctors can then pull in behavioral health counselors or social workers to help connect that family with the resources they need to address their issues.
Vaughan, the Mosaic pediatrician, recently had a patient he was treating for anxiety and attention deficit hyperactivity disorder. Nothing seemed to work.
“We discovered that his mother had experienced, in multiple relationships, domestic violence. Both the child and the mother had suffered abuse,” he said. “The mother didn’t have the ability to free her child from that abuse, nor could she parent effectively because she’s coming out of a chronic exposure to domestic violence and not knowing how to navigate that without help and support.”
Vaughan compares it to the safety instructions given on planes.
“When the oxygen mask comes down, you have to put it on yourself first in order to help your child,” he said. “And you discover a lot of the time without doing that, you’re not going to see any kind of progress.”
When Fitzgerald entered high school, her mom remarried and suddenly with two incomes, life became less of a challenge. They moved into a new house, the nicest home she had ever lived in.
“It had an upstairs and a downstairs,” she said. “We went bananas when we moved in. We ran up and down the stairs.”
Fitzgerald had taken up ballet and was now dancing five days a week. Her grandmother encouraged her to take up modeling and beauty pageants. Fitzgerald hated it, but it was a way to get more clothes and to spend time with her Nana. One her fellow contestants taught her how to purge.
“I thought that was really gross, and that’s actually pretty expensive, because you have to buy a lot of food,” she said.
She had learned that hunger had a way of numbing a person, that once you get beyond hungry, it dulls your sensations. Through much of her life, she chose to have her siblings fed, than to eat herself, and over the years she had come to associate eating with being greedy or selfish.
She developed an eating disorder and at age 17, had withered away to the point of organ failure. Her mother took her to Boston Children’s Hospital, where the doctors tried brutal honesty to get through to her.
“He said to my mother, ‘Ask your daughter what kind of casket she wants for her birthday,” she said. “I was totally not going to be intimidated by him, but I was terrified of dying.”
Her friend organized an intervention, and forced Fitzgerald to watch a movie about anorexia. Her heart was developing arrhythmias, and one weekend at a Christian retreat, it suddenly became clear to her what was happening.
In desperation, she tried to eat a pear, but could not keep it down. She pleaded with her mom to help her.
Her mother found a nutritionist who re-fed her from a liquid diet, progressing to baby food and eventually back to solid food.
Finding a buffer
While many studies of traumatic events in childhood have been focused on the risks of adverse health outcomes, researchers have also been investigating why some people with high adverse childhood experience scores seem to do okay.
“Some people don’t have these bad outcomes,” said Katie McClure, a population health expert who once worked for Kaiser Permanente before moving to Bend. “What is common among those people is something called resilience. The more resilience you have, the less likely you are to have these bad outcomes.”
But resilience isn’t necessary an innate characteristic, something you’re just born with. It can be fostered and developed in children and adults.
One of the ways is through mastery, McClure said, “when you give a child the opportunity to be good at something. It doesn’t have to be being a master violinist. It can be getting a their math problem right.”
Other factors like having a strong cultural identity that gives people a sense of belonging and builds self-esteem, build resilience as well.
“The biggest one, the research shows, is supportive relationships, between the child and the caregiver,” McClure said. “The extent to which every child has a caregiver that is able to interact with them in positive ways, that’s going to be our biggest bang for our buck.”
Dee Thies never thought she’d be a caregiver again. But after her son had a stroke in 2013, his wife, who had been diagnosed with bipolar disease, left with their son, Vincent, when he was just 2 years old. For three years, Thies and her son had no idea if they’d ever see Vincent again or whether he was being told that his father abandoned him.
“I told my son that I suspect that someday as a teenager, he’s going to come to your door; he’s going to be an angry young man,” she said. “And you can talk till you’re blue in the face — you’re never going to convince him different.”
Thies got each of them a box and every time they were thinking about Vincent, they dropped a note in the box.
“Vincent, I’m thinking of you today. How’s your first day of school? What did you dress up as for Halloween,” Thies explains. “And when he shows up at your door, all you have to do is hand him that box. He’s going to see that you never stopped loving him, that you never left him.”
In January 2017, three years after Vincent had been taken, Thies got a call from her son.
“Mom, I know where he is,” he told her.
Vincent’s mother had left him in Pennsylvania with her second husband’s cousin, who tracked down Thies’ son on Facebook. They flew to Pennsylvania to meet him and three days later, Vincent was ready to come home with his father.
The 5-year-old boy was malnourished, weighing a scant 32 pounds. He survived on frozen waffles, Pop-Tarts and potato chips. She bought a child’s suitcase at Walmart and filled it with junk food, just so she could get him home.
Thies stayed with her son in Colorado for another three weeks, helping them settle into a routine. But Vincent was having behavioral problems in school and her son was still recovering from the effects of his stroke. Thies decided to bring Vincent to her home in Redmond for the summer and then decide what to do in fall.
In Redmond, Vincent started to flourish. Thies took him to counseling and therapy classes. She took parenting classes. In the fall, she enrolled him at the local elementary school.
At first, Vincent was glued to her hip. She could hardly turn around without bumping into him.
“Vincent,” she told him, “Nana is not ever going to leave you. Nana is her to protect you and keep you safe.”
“You’re not going to leave?” he asked.
“I’m not going to leave.”
But that meant Thies, at age 70, had to learn to play dinosaurs and trucks.
“All his play was gloom and doom, tragedy and death,” she said.
Vincent had spent countless hours watching true crime programs with his mother.
“It was so negative,” she said. “If he had an airplane, it crashed and burned up. His cars would crash and everybody was dead. I kept saying, pretend the plane landed and everybody got off and went to Disneyland.”
Thies took him to the zoo and the science center trying to give him the positive experiences he had missed during his early childhood. She enrolled him in swimming classes to build his self-esteem and soccer to work on teamwork. She slowly introduced him to new foods, asking him to try one new food every day. But it remains a challenge.
“I don’t think it’s the taste of the food or fear of the food,” she said. “I think that’s the only control he has in his life. He does have his trauma issues, but I’ve been very blessed not to have an angry rebellious young guy. He’s come such a long way.”
When Vincent first came to her house last year, Thies pulled out the box she had filled with notes, three years worth of love and nurturing that Vincent had never seen and so desperately needed.
“We were so worried that we weren’t going to see you until you were an adult, so this is what Nana and daddy have been doing,” she told him.
In March, Vincent asked her if he could keep the box in his room.
“I wasn’t prepared for all the trauma issues he was going to come with,” Thies said. “If I had not had all these support groups and all this information coming in, I don’t know that we would have advanced as much as we did.”
Fitzgerald had no illusions of going to college after she finished high school.
“College was what rich kids did,” she said. She couldn’t fathom going through the application process, facing the potential rejection from schools or knowing she couldn’t afford it if she got in.
A guidance counselor suggested she check out a Bradford College, a small liberal arts school north of Boston, that had a single-day admission process. She passed the admissions tests and found out she was accepted that same day. She applied for student loans and worked all summer to save the cash for part of the tuition.
For the first time in her life, she felt like she fit in. She designed her own major, a combination of literature, arts and psychology, with a minor in women’s studies.
For one summer during college, she moved out of her parent’s home in a dispute over money, and slept on a hammock on the beach or in the breakroom where she worked. When she graduated college, she felt like she couldn’t go back home.
She applied for graduate school at Lesley University and completed a degree in art therapy. She found a job working in community health and got married. For a while, life seemed stable again, until a mysterious fire burned their belongings. Fitzgerald discovered her husband had a drug addiction. After a co-worker was killed on the job, she took a new job as a resident manager at a mountain lodge in the White Mountains of New Hampshire. After separating from her husband, she followed her old boss down to Florida. There she had a relapse of her eating disorder, and decided to find a place she could rebuild her life. She moved to Bend.
A call to action
Many in the health and social services fields argue that the two decades of compelling research on the impact of adverse childhood experiences now compel action. In Central Oregon, a handful of nonprofits, including KIDS Center and MountainStar, have already incorporated ACEs into their work. Deschutes County Health Services is screening for adverse childhood experiences in kids referred for mental health services at its seven school-based health centers. And increasingly, medical clinics are jumping on board.
“It took a while for it to percolate along in various sectors, but I think it’s It’s an issue whose time has come,” said Ken Wilhelm, executive director of United Way of Deschutes County.
In 2016, a number of nonprofit agencies launched the TRACES movement, a community-wide effort to dramatically increase the health and well-being of Central Oregonians by addressing childhood trauma and building resilience. At the same time, the Central Oregon Health Council, made up of representatives from the major health care institutions in the region, published its regional health assessment, identifying childhood trauma as a major issue that needed to be addressed. The council threw its support behind the TRACES movement, with a three-year $2 million grant. It was the largest grant the council has ever issued.
The movement, with the United Way serving as its backbone organization, now has more then 30 nonprofits and businesses working together toward building resilience in the community and addressing childhood trauma issues. The group contracted with Oregon State University-Cascades to find ways of measuring resilience within the community, and aims to see if can move that needle locally.
While each of the organizations will choose how to adopt adverse childhood experiences and resilience into their work, the group will start with two specific initiatives, one targeting children in the foster care system and a second ensuring that all babies have their needs met.
The group has estimated the economic impact of adverse childhood experiences in Central Oregon at $38 million to $81 million per year, including $12 million in health care costs.
McClure said investments like that of the health council should wind up saving the health system money in the long run. If fewer traumatic events occur or if those affected by adverse childhood experiences get help, it could reduce the prevalence of costly chronic diseases and mental health issues.
School systems would benefit, as kids would come to school better able to learn and demand for special services could drop.
“As employers learn more about this, they will begin to recognize that in a lot of what they’re seeing in their workplace, like absenteeism,” McClure said. “This is the workplace wellness strategy that nobody is talking about.”
In Bend, Fitzgerald has continued to recover from her eating disorder. She had become anemic and for years had to be treated with IV infusions. She still deals with anxiety and PTSD from the trauma in her life.
“There will be periods of time where I’m totally fine, something in the family will take place, a death will happen, and I’m having nightmares all over again,” she said.
She has learned over time to share some of the traumatic events of her life, but until this article has never revealed the entire story.
“The whole ACES movement is coming with tools for how to talk about scary things that have happened to us, so we don’t have to hide them anymore,” Fitzgerald said. “That was the worst part for me, feeling my whole life like I was transparent and people were going to see through me at any minute, all the bad things I had experienced.”
She still struggles with some of the daily tasks most would take for granted.
“Just learning how to navigate middle class,” she said. “You have a lot of weird funny or humiliating experiences of navigating systems of privilege.”
She has remarried, and although she still has trouble spending money, she has started to fill her home with the staples of middle class life.
“The really simple things bring me a tremendous amount of comfort and pleasure,” she says. “A cup of coffee is a miracle; having a real bed that’s not a mattress of the floor; I have nice sheets and a comfy duvet. I really love our couch.”
She revels in being able to do grocery shopping without a calculator or to be able to replace a broken popcorn popper the same day.
“There are days,” Fitzgerald says, “when that kind of stuff can bring me to tears.” •