In New Mexico, surviving a brain injury is just the beginning
Posted: Saturday, March 25, 2017 11:35 pm | Updated: 10:38 am, Mon Mar 27, 2017.
Wherever she went, Arlene Atherton rolled a large, black suitcase along behind her. It was filled with legal documents she wanted to keep close, she said. The stacks of paper told the story of how she came to be shuffling around Santa Fe for several months, with no money and no permanent home, still trying, six years later, to pursue a lawsuit over the Cerrillos Road accident that turned her life inside out.
Still trying to get a sense of peace.
But a sense of peace is hard to come by for Atherton, who suffers from the effects of a severe brain injury. Her mind isn’t as sharp as it was before the accident, and her memory is sometimes muddled. Her behavioral symptoms often are perceived as mental illness. Misunderstandings and emotional outbursts have led to tangles with police.
Since she was hit by an SUV during a visit to Santa Fe in January 2011, Atherton, 60, has been housed in mental institutions and arrested on trespassing charges, and she has been “constantly displaced” in cities across the nation.
Atherton, who lost a California home to foreclosure after the crash, was reluctant to say she has been homeless.
People tend to think “at some level, you have basically lost your marbles,” she said in an interview. Making matters worse, she said, “the care availability is thin.”
In recent years, the U.S. military, the NFL and the NCAA have been working to raise awareness about brain injuries sustained in combat or on the sports field, and most states, including New Mexico, have enacted concussion protocols and helmet laws to protect children and teens.
But brain injury survivors, advocates and doctors say countless victims still struggle to get treatment and support services as they watch their lives unravel. Across the nation, too few doctors and other medical professionals are trained to diagnose and treat the problem, and private insurers don’t want to cover the high costs of long-term rehabilitation. Experts say access to services is even more limited in New Mexico, a state with a shortage of brain injury specialists and no intensive rehab programs to help patients rebuild their skills in the first few months after an injury, when intervention is critical.
There are few support groups for brain injury survivors, leaving those suffering from this invisible, poorly understood epidemic to feel isolated, and even ostracized, in their communities.
John Pimentel, director of the state-contracted New Mexico Brain Injury Resource Center based in Albuquerque, says the state has high-level trauma services and facilities for brain injury patients in the first couple weeks of treatment. What’s lacking, he said, is the follow-up care required for continued improvement.
Dr. Mark Pedrotty, a pediatric rehabilitation psychologist at the Carrie Tingley Children’s Hospital in Albuquerque, agreed. “There’s some services for kids,” he said, but long-term services for adults are lacking here. “We can save your life, but after that, you’re on your own. … It’s really a tragedy that’s occurring.”
Pimentel is one of two people in New Mexico who trains medical staff and therapists as brain injury specialists through a national certification program. The state has 13 specialists now, most of them in Albuquerque, compared to more than 80 in nearby Nevada, Pimentel said. He is working to train more specialists and expand their reach throughout the state.
The resource center also has created a “clubhouse model” of support for brain injury survivors that Pimentel hopes will be replicated in other communities — places where people can socialize; search for jobs, services and resources; meet with case managers; attend support groups; share a meal; and learn new life skills.
An estimated 1.7 million Americans — including thousands of New Mexicans — are diagnosed with a traumatic brain injury every year, according to a 2016 study by the Statistic Brain Research Institute. Experts say millions of other injuries go unreported and undiagnosed, and the effects of even a mild concussion can last years or an entire lifetime.
The vast majority of brain injuries are caused by falls. Others are from high-contact sports and auto accidents. Many are from childhood abuse or domestic violence. Some are caused by exposure to toxic chemicals or oxygen deprivation.
Marsie Silvestro, executive director of the Esperanza Shelter for Battered Families in Santa Fe, has become increasingly concerned about head injuries in women and children, not just from beatings but also from strangulation, a well-hidden problem. “It has a deeper repercussion than we even know.”
Kathryn Townes, 69, of Santa Fe is still recovering from a brain injury sustained during a series of assaults by an ex-husband in 2013. Her hands shook during an interview at her home as she pored over police reports, medical reports and court documents, and described attacks in which, she said, the man placed his hands around her throat and choked her into unconsciousness. “This man left me destroyed.”
Townes suffers from an anxiety disorder and other health problems tied to the assaults. “I’ve changed,” she said. “I’m not OK anymore. … I don’t think I ever will be.”
Her ex-husband, who was charged with several felonies, including sexual assault, eventually pleaded guilty to reduced counts of misdemeanor battery and false imprisonment, an outcome Townes believes was largely because of her brain injury. She was confused when people were questioning her, she said, and there were key details she forgot to tell police officers and prosecutors.
“I became very emotional when the sexual assault questions were being asked by a very intimidating [public defender],” Townes said. “I asked them to stop. They told me I would endure the same thing in court. … That terrified me, so I asked that they accept a plea.”
When brain injuries go untreated, said Glenn Ford, a volunteer with the nonprofit Brain Injury Alliance of New Mexico, an advocacy organization, the costs to society are immense. People are left with lifelong disabilities and mental illness, putting a strain on social services and even jails and prisons.
In a 2015 report to Congress, the U.S. Centers for Disease Control and Prevention estimated that more than 60 percent of the nation’s inmate population has a history of brain trauma. The CDC also cites a link between brain trauma and homelessness.
A life set adrift
During the interview with Atherton a couple of months ago, she declined to say where she was living in Santa Fe. Since then, she has left town. She stopped answering phone calls and emails. She left a voicemail message with The New Mexican two weeks ago but didn’t include a number where she could be reached. A friend of Atherton’s said she was in a mental institution in Illinois. It was unclear how she got there or if her stay was voluntary.
She didn’t always wander from state to state, dragging a suitcase full of court records and dodging questions from police officers and security guards.
After a first career in the finance industry, Atherton said, she was just beginning to see success in her second career, cultural anthropology. She spent time overseas, studying the use of technology across cultures. She produced books and created museum exhibits.
The accident in Santa Fe derailed her progress.
Atherton, then a resident of California, was visiting the city to complete an artist residency program at the Santa Fe Art Institute. On her last day, Jan. 7, 2011, she spent some time downtown and then caught a city bus back toward the institute. As she got off the bus on Cerrillos Road at St. Michael’s Drive and began to cross a lane of traffic, she was struck by a Toyota 4Runner.
She lay unconscious and bleeding on the roadway, a police report said. Officers found an airplane ticket in a bag lying beside her. She had been set to fly out the following day.
The driver who hit her was never charged in the incident, but Atherton faced a count of jaywalking.
Hospital records provided by Atherton show she spent three days in a coma at Christus St. Vincent Regional Medical Center and underwent several surgeries. She suffered a fractured skull, pelvis and ribs, and had an injured kidney removed.
She also suffered from a subdural hematoma, bleeding in the brain that is among the deadliest of head injuries, records show.
Atherton had memory loss and a general sense of confusion. She was angry and depressed. She said she knew she needed more treatment for her head injury when she was released from the hospital. But she said the hospital didn’t give her a referral.
Hospital spokesman Arturo Delgado said in an email that he couldn’t discuss Atherton’s case because of patient privacy laws.
After spending a couple of months in a nursing home in Santa Fe where, she said, the staff didn’t have the skills to help her regain her cognitive abilities, she hitchhiked to Denver in a wheelchair, hoping to find a doctor who would treat her. It was the beginning of a long journey.
Atherton’s quest for rehabilitation took several years and carried her across several states. It wasn’t a smooth ride. She lost her house and became estranged from her family, she said. She was institutionalized for nearly a year in Virginia and was jailed a couple of times — once for using a phone in a hotel lobby. But eventually, she found the care she needed in New York.
“The prognosis I got from my doctors is that I would need a minimum healing time of 10 years,” she said.
Atherton returned to Santa Fe last summer to continue pursuing her lawsuit against the city bus service, the driver who hit her and his auto insurance firm, which so far has refused to compensate her for medical expenses. Her suit was dismissed in state District Court because she missed a hearing. In February, she was preparing an appeal, but court records show she never filed it.
To Ford, of the Brain Injury Alliance, Atherton’s story has some painful similarities to his own past. Ford sustained a brain injury 25 years ago in an on-the-job car crash. He wasn’t diagnosed at the time.
“I didn’t know what had happened to me,” he said, “and the doctors kept telling me, ‘You will get better.’ ”
In the meantime, he lost his job as a civil engineer. He also lost a court case against his former employer.
Several years after the accident, Ford began a rehabilitation program, and he got involved with the alliance. “I saw this huge need to help people” with legal and medical issues, he said.
Navigating the legal system can be a battle for people with brain injuries.
On the verge of solutions
Sheila Lewis of Santa Fe Safe, a project of the Solace Crisis Treatment Center, is familiar with the obstacles domestic violence victims face in the criminal justice system. A head injury from strangulation, in particular, can impair one’s ability to recall the facts of an incident, she said.
Lewis is part of a coalition that successfully pushed for passage of legislation that calls for a task force to raise awareness of strangulation and find ways to reduce its long-term health effects — such as training police officers and emergency medical responders to screen people for signs of brain injury in domestic violence cases.
The proposed task force is one of several efforts underway to improve care for brain injury survivors in New Mexico.
One important step forward, advocates say, is a new partnership between the Loveland Rehabilitation Hospital and The University of New Mexico School of Medicine to develop a residency program aimed at increasing the number of brain injury doctors in the state. Hospital CEO Derrick Jones said the program would serve about nine medical students.
The New Mexico Brain Injury Advisory Council, a panel appointed by the governor, is working to identify gaps in services and insurance coverage, and the nonprofit Brain Injury Alliance is raising funds for a new initiative to open community wellness centers.
There’s a long way to go, said Pedrotty, who serves as president of the alliance, but “it’s all beginning to come together.”
Pimentel also believes the state is poised to begin making strides. “This is the perfect moment in New Mexico,” he said.
“In order to have a system that works, you need to have the infrastructure,” he said, “but you also need to have the understanding.” He’s been holding information sessions at the Brain Injury Resource Center for law enforcement officials, first responders, employers and other groups. He hopes to continue the effort, educating school staff, parents and youth sports groups.
ARCA, a New Mexico nonprofit that helps people with intellectual and developmental disabilities, recently was awarded a $50,000 annual state contract to take over operations of the resource center, which has had various homes in past years where patients could go to learn about services. ARCA has taken the concept several steps further.
“We create community,” Pimentel said of the new clubhouse model.
The Albuquerque center opened its doors in mid-December and is already bustling with clients who say they feel welcomed there.
“Everybody wants to fit in, so it’s nice when you’re in a place where everybody’s banged up liked you,” said Sebastian “Wolf” Cruz, 40, on a recent day at the center. Cruz, a former professional wrestler adorned with body piercings and tattoos, who said he took too many blows to the head in the ring, attends a support group there once a week.
“The group has been a blessing,” he said, “because it’s helped me not just adjust to being social with people, but also explain to family, ‘Hey, this is what’s wrong.’ ”
There are about a half-dozen brain injury support groups in Albuquerque — some of them drawing 20 or 30 people a week — but few others around the state.
Mimi Adams belongs to a small group that meets monthly in her hometown of Los Alamos. It helps to speak with other people who understand your struggles, she said.
Adams, 44, a former special-education teacher, sustained a brain injury seven years ago during a schoolyard game of dodge ball. She was struck by a stray ball and then slammed her head against a wall. The injury didn’t seem serious. She didn’t lose consciousness, she said.
But Adams’ symptoms persist: a headache that never goes away, fatigue, memory loss, hand tremors, irritability, trouble with balance, lack of concentration, confusion. She can no longer drive.
A brain injury is a lonely illness, Adams said. “People don’t expect me to be sometimes easily confused.” Friends don’t have patience with a poor memory or constant headaches. “They think you don’t try hard enough.”
Making connections with people who “get it” is important, Adams said.
Cruz, a regular at the Brain Injury Resource Center since the day it opened, is a card, cracking jokes with Pimentel and others at the center about living with a brain injury. “Knock, knock,” he said. “What’s the response? ‘Who’s there.’ But I’m like, ‘Who? What? There’s a door? Where?’ ”
As the laughter died down, Cruz grew somber. “At the end of the day, it hurts,” he said. “I’ve lost so many friends because of it, because they don’t understand it. I lost one friend of 32 years. … He said, ‘You’re not welcome in my home. … You’re not stable.’ ”