Nathan Ruiz rode his bike, without a helmet, to the corner of Redwood Road and 9000 South in West Jordan on his way to meet his two best friends. The sun was setting on a chilly March 2004 evening, leaving the sky stained purple and orange.
Then 12-years-old Ruiz rode in front of a parked van and onto Redwood without seeing a white car approaching him at 45 mph. Upon impact, he flew 40 feet and landed on his head in the street. His skull fractured in five places, a portion of his brain extruding from his left ear.
By the time a comatose Ruiz was flown by medical helicopter from the blood-drenched street corner in West Jordan to Primary Children’s Medical Center on March 25, 2004, he was bleeding from every opening in his body. Doctors gave him a 2 percent chance of survival. His mother, Brooke Gonzalez, told them that was unacceptable. While the doctors removed a piece of his skull to let his brain swell, 50 relatives and friends of the family gathered in the intensive care unit’s waiting room area.
Over the next few days, Ruiz’ head swelled to three times its normal size. It touched the ends of his pillow, leaving him unrecognizable.
Gradually, the swelling came down, and nine days after the accident he was taken off of the ventilator and began breathing on his own. As the days wore on, he opened his eyes, grunted and moaned. He whispered nonsensically and would get mad when no one understood him.
Without language and very little memory, Ruiz’ eyes were constantly wide at the foreign world around him. The only people he remembered were his parents. One night, as his father Pablo Gonzalez held his hand by his bedside, Ruiz woke up, saw him, wiggled like a baby into his arms and went back to sleep. Gonzalez wept as he held him.
Doctors predicted that Ruiz, whom Gonzalez calls “my medical-miracle boy,” wouldn’t know any language and would have a mental age of 1. Three weeks after he was admitted, the doctors reattached the left side of his skull. One of his first words was “Fuck,” spoken angrily to a nurse, his mother recalls. The obscenity had the nursing staff cheering because the first part of the brain to wake up is typically the uninhibited part.
A few days later, the doctors told Brooke Gonzalez they thought Ruiz could go home. When she questioned whether their decision-making was related to her not having insurance, they told her she would receive help at home “to give me time to apply for financial assistance.” On April 20, Ruiz was discharged.
Two weeks after Ruiz had gone home, the therapists and home-health-care nurse stopped coming. The Gonzalezes were alone with a child who needed 24-hour supervision, incoming bills totaling $376,000 in just the first two months, and monthly therapist costs of more than $5,000. Subsequently, medical bills forced the Gonzalezes to sell their home and declare bankruptcy. They’ve had to move to rental properties several times to keep Ruiz’s medical benefits.
“Not having any help for him was hard,” Pablo Gonzalez says. He took unpaid time off from his tire-delivery job to help with his son. “We had no idea how to care for him.”
ON YOUR OWN
In the six years since Ruiz’s accident, he and his family have struggled with the repercussions of his traumatic brain injury. In particular, he and his parents have felt increasingly betrayed. The hospital administration betrayed them by sending Ruiz home less than a month after he was admitted with horrendous cranial damage. Family and friends betrayed them by drifting away, tired of the never-ending drama of Ruiz’ medical and emotional needs. The Jordan School District betrayed them by failing to protect their vulnerable son from vicious bullying.
Ironically, the family had as good a chance to adapt as anyone, because Ruiz’s mother, Brooke Gonzalez—her son carries her maiden name—was Utah’s Brain Injury Association [BIA]’s administrative assistant for two years after Ruiz was born. She knew more than most the lifelong struggles her family and son faced after his accident. Unlike many families who, unable to cope, seek to institutionalize their brain-damaged relative or put them into a nursing home, she has fought relentlessly for financial and medical assistance for her first-born. “She is a very exceptional mother,” BIA’s director Ron Roskos says.
Started in 1984, nonprofit BIA provides resources, help and a willing ear for victims and families struggling with brain injuries. BIA is in a dilapidated, half-empty building in South Salt Lake with chimes on its front door to alert the two full-time staff to visitors.
Brooke Gonzalez and Lynda Valerio have been best friends since they were 8. When Gonzalez left the BIA in 2001, Valerio took over her position. A brain injury, Valerio says, isn’t just blunt trauma to the head. “It’s strokes, concussions, tumors—anything that happens within the brain, that affects it, on a mild-to-severe level.” A brain-injury survivor’s future is often bleak, with 50 percent of those suffering brain injuries developing Alzheimer’s, according to BIA statistics. Every week, six more Utahns join the 44,000 state residents already living with brain injuries.
One of the BIA’s on-and-off clients, Margaret Burke, died on Feb. 27, 2009, at the age of 60. On the surface, Burke and Ruiz had little in common. Unlike Ruiz’ car accident, Burke’s Wisconsin-based sister Betty Henningfeld attributes Burke’s first brain injury to a 1997 stroke, complicated by paranoid schizophrenia. BIA’s Roskos believes domestic violence and several falls may also have injured her brain.
Burke drifted from job to job, from one abusive relationship to another, and endured at least one period of homelessness. If Burke “could have had some other help” beyond what the financially strapped BIA could do for her, “she’d still be with us today,” Roskos says. “Her body just kind of wore out.”
Yet, Ruiz and Burke are two ends of the same spectrum. One has a close knit family, the other was alone. One has a home, the other searched for one much of her adult life. One is young, the other, in her final years, was old before her time. What unites them is that they both fought to re-enter a society indifferent to the devastating long-term impact of brain injuries. “If Nathan didn’t have the support he has, he’d become a Margaret,” Roskos says. With or without family and state support, Ruiz and Burke experienced violence, marginalization, neglect and abandonment. In Burke’s case these had fatal consequences.
A cruel irony of brain injuries is that victims aren’t eligible for help from federal- and state-funded Valley Mental Health, itself cutting back on services for its mentally ill clients. That places all the more emphasis on the underfunded BIA.
Roskos and Valerio dream of a place where people like Burke and Ruiz can go for medical treatment, services, guidance and a roof over their heads. “We don’t want to be just a hand-out place, a last resort,” Roskos says. But, after 25 years, it’s still just a dream. One legislator, Roskos says, told him that treating brain injuries “is like pouring sand out of a boot. It never ends.”
The once-gregarious and popular Ruiz, who ran with a tough crowd before his accident, knows his brain “is never going to be better.” But, he wants to get the best out of the hand life has dealt him.
“The what-ifs list is off the charts,” he says. “The what-I-have list is very simple but can be made better.”
Born in Wisconsin on Aug. 7, 1948, Burke converted to The Church of Jesus Christ of Latter-day Saints and moved to Utah, where she married her first husband in the late ’70s. That marriage fell apart a decade later, and sister Henningfeld believes that after Burke lost her parental rights to her two daughters in the 1980s, she began a slow decline, mentally and physically.
“Her heartache was her lost relationship with her daughters,” her friend Judy Perry agrees.
“There were moments you would see her by herself,” recalls Naomi Spencer, a worker at Valley Mental Health day-treatment center Pathways, which is slated for closure at the end of this year. “She was lost and alone.”
Toward the end of her life, Burke suffered from severe diabetes—which destroyed her eyesight and her feet—and paranoia and anxiety. In her final months, she needed new eyeglasses and teeth replaced, but never got them. Nevertheless, Burke fought hard to keep her independence. She wanted to start a business and tried unsuccessfully to fund her own newsletter, Margaret’s Bridge. “She wanted to share all the things she was aware about for the disabled with other people who needed them,” BIA’s Valerio says. “She had a huge heart, cared so much for everybody.”
From 2005 until August 2008, Burke lived in a basement apartment on 700 East and 1800 South. Now 71-year-old Perry met Burke in the early 1990s, when Perry worked as a teller in a downtown credit union where Burke deposited her checks. She says Burke was a “pack rat” who couldn’t even throw away an outdated grocery flier or used pizza-box “in case it might trigger a memory.”
Burke felt unsafe in her 700 East apartment, convinced people were entering it when she was gone. On Aug. 25, 2008, she called Cathy Clara at the Independent Living Center, which helps the disabled. She asked Clara to help her find a new home, and then put all of her endless papers and boxes in several storage units.
All she cared about, Clara says, “was having her stuff. The paper was evidence of her life.” It may also have held, at least in Burke’s mind, the clues to one day explain to her estranged daughters why she lost custody.
After Burke moved out of her apartment, the UHA agreed to give her a 180-day extension to find another home. But first, the UHA required that she pay her previous landlord past-due rent of $280, which she couldn’t do. Complications from her diabetes and brain-injury-related memory issues meant she often lost money and checks. She also couldn’t afford the co-pays for her insulin shots and medical visits, so she often went without them.
Her storage units, however, were always paid up.
IN YOUR FACE
Ruiz knows too well how hard it is to process reality with a brain injury. “I can’t just do things,” he says. “I have to think about it.” To cross a room, he thinks about moving his arms, then standing up, then looking to see if there is something he might run into. Only then does he consciously step forward. It is an exhausting process.
Post-injury mood swings, an inability to recognize the personal space of others, and a new bluntness drove many former friends away. “He would say what he felt and it would hurt people’s feelings,” his mother says.
Another problem was the abrupt way in which Ruiz would behave immaturely. When Ruiz celebrated his 13th birthday at home surrounded by friends, he behaved “very young,” his mother says. “His friends didn’t understand how to be with him.” The following month, most of those same friends stopped coming to his house or answering his calls.
His former best friend, Enrique Connor O’Neill, still struggles with guilt about Ruiz. He walked his friend around Ruiz’s home, pointing out objects to see if he remembered them. But Ruiz endlessly repeated embarrassing questions, such as why he wore cologne, with a bluntness that upset O’Neill.
Additionally, O’Neill felt personally responsible for Ruiz, but adds, “when it was time for me to step up to the plate, I ran away screaming.”
Along with disappearing friends, relatives drifted away. That’s all too common, BIA’s Valerio says. “They look at you and physically, once the scars have healed, you’re the same person. They think “Why can’t you put it behind you and stop using it as an excuse to not be able to work or remember?”
Ruiz started West Jordan Middle School in August 2003, a period of his teenage life that his mother calls “the meanest years.” Post-accident, Ruiz was determined to return. “He missed his friends,” his father says. He went back at the start of eighth grade, his head shaved, the scars across his scalp painfully visible. None of his old friends would hang out with him. When he saw people laughing at him, he thought they liked him. He would go over, and they would laugh more and walk away. “That would kill him,” his mother says.
“I WANT THE BRAIN
I USED TO HAVE”
A few weeks after Ruiz had returned to school, a “kid tried to punk him for his sunglasses,” O’Neill says. Ruiz needed the sunglasses because light distracted him too much, and when he refused to give the glasses up, the kid punched him.
Brooke Gonzalez says initially, the school was sympathetic to Ruiz’s needs, but soon got tired of her weekly visits to complain about the bullying—or, as a school report described them, “slight altercations.” Those altercations, Gonzalez and Ruiz recall, included a youth throwing a Pepsi bottle at his head, but what hurt Ruiz more than the bottle was that former friends stood by, watching instead of protecting. Even the classroom wasn’t safe for him. While sitting at his desk, a classmate slammed the back of his head with a textbook so hard that Ruiz had to go to the hospital. It was as if his peers wanted to see if his brain injury was real.
Ruiz took several classes at West Jordan Middle School, while also being bussed for two classes of woodshop to South Valley, a school for handicapped students, in 2006. Ruiz’s parents hoped being with teens more disabled than he was would improve his self-esteem. “He taught others,” his mother says. “He did wonderfully there.”
When Ruiz started Copper Hills High School in 2007, he insisted on two classes a day at the school. Copper Hills, Brooke Gonzalez says, was more sympathetic to her son’s needs. While there was still bullying, it was mostly verbal abuse, such as calling him “a retard,” she says.
He continued attending woodshop at South Valley but, after several months, asked his parents, “Am I like them? Am I mentally retarded?”
In October 2007, while his peers attended school football games and dances, a friendless, rejected Ruiz plunged into depression. He cut himself repeatedly. One night, he made multiple slight cuts on one wrist and stabbed himself in the other. He went crying to his mother and showed her the wounds. “I need help,” he told her. He spent a month in a psychiatric unit.
In October 2008, Ruiz tried to kill himself again after the break-up of a four-year relationship with a neighborhood girl. “She was the one person who was a real good friend back there,” his father says. The loss of her support, Ruiz says, “was the most painful thing I ever had.”
When his family moved to Sandy, a suburb he found cold and unfriendly, “I didn’t know what to do with my life anymore. I had no friends, no one to turn to.”
Before his suicide attempt, he looked at pre-accident photos of himself. “I want the brain I used to have,” he told his mother. “I want to be like I was before.”
He stole three bottles of NyQuil from a gas station, drank them and swallowed a handful of pills. His mother, hearing his labored breathing, forced him awake.
“Just leave me, Mom,” he said. “I want to die.”
In November 2008, a homeless Burke was struggling to negotiate Salt Lake City’s icy streets. She went to the Brain Injury Association for help finding a wheeled walker. Valerio told her even through Medicaid, it would cost $124—something she could not afford.
Valerio and Roskos were shocked by her deterioration in the several years since they’d seen her. They collected food for her to take with her many bags back to the shelter.
“She was pretty desperate,” Valerio says. She came to the BIA on an almost-daily basis, wrapped up in four layers of clothing, a scarf around her head and neck, gloves on her hands and dragging all her bags. Tired and hunched over, she also struggled with incontinence, so Valerio bought her adult diapers. That way, Valerio says, when she got a bed too far from the restroom in the shelter, she wouldn’t panic.
“She wasn’t getting anywhere, she wasn’t getting anything resolved and she was getting sicker on the streets,” Valerio said. “No one should be treated this way.”
Burke would disappear for a few days, only to call Valerio on several occasions and tell her she was looking after her friend, an ailing Vietnam veteran named Anthony Johnson, in Ogden. On Christmas Eve, Burke went to the shelter at St. Anne’s Center in Ogden, before being booted out early the next morning.
That Christmas morning, Burke, wearing a blue coat and thin, pink pants drenched from the snow, went into the Ogden Marriott. She was shivering so violently and had such high blood sugar that an EMT called to the hotel was uncertain of his readings. Burke told a Standard-Examiner reporter doing a Christmas Day ride-along with the ambulance crew, “People need to realize that the homeless are very much feeling like second-class citizens.” She said she felt neglected, but she didn’t fit into people’s idea of a homeless person.
“Margaret was so alone,” Valerio says.
Burke was able to settle her debts by Jan. 9, to the point that she was able to move into a 518-square- foot apartment in the Lost Creek complex on the corner of State Street and Vine in Murray. Perry and a local LDS ward youth group helped her empty out her two storage units and moved all of her boxes in, stacking them from floor to ceiling along the walls, then piling them in library-like aisles through the rooms.
Burke did not have time to open them.
Six weeks after she had moved in, Independent Living Center’s Clara was on the phone with her when Burke said her legs were oozing fluid. “I knew it was congestive heart failure. I knew it instantly,” Clara says. She urged Burke to call her doctor but, afraid of getting moved to a nursing home, Burke refused.
On Feb. 24, Lost Creek apartments’ management office called Perry. Burke had collapsed in the laundry room with a heart attack, sister Henningfeld says. Paramedics got a pulse and rushed her to the hospital across the street, but she never regained consciousness.
A friend Burke had given her medical power of attorney to approved turning off her life support.
On Feb. 27, Perry picked up the veteran, Johnson, in Ogden and drove him to the hospital in Murray. Perry and Johnson, standing on either side of Burke’s bed, held her hands. In tears and near collapse, Johnson told Burke he loved her. Perry did the same and “wished her a happy journey.”
Three minutes after the machines were turned off, Burke took her last breath. She died on Feb. 27, at 3:35 p.m., age 60.
After all the sadness Burke had endured in her quest to find a place in life, without her children, finally, Perry says, “She’s at home.”
WALKING THE WALK
Four months after Burke’s death, Ruiz experienced a kind of rebirth. On June 11, he graduated from Copper Hills with a 3.8 GPA.
In the run-up to graduation, he’d been excited about adulthood and living on his own. Then, his mood changed. He asked his parents if they planned to kick him out. When they said no, he said, “What if I have to live with you forever? Dad wants to travel when he retires.”
“Then you can go with us,” his mother replied.
His father took him to the E Center and took photographs of him in cap and gown on the steps. No friends came over to congratulate him. “There again, it was just kind of him [on his own],” Gonzalez says. When Ruiz’s parents and relatives saw him in line, many were in tears.
Ruiz could hear his aunt screaming his name and turned to look at his family. “They were the only people who knew,” he says. “Everybody else doubted me … Grabbing my diploma was the best feeling I ever had.”
On Sept. 15, Ruiz started classes at Salt Lake Community College, hoping one day to specialize in repairing Nissan cars.
The Sunday night after he had started college, Ruiz wheeled out the garbage cans to the curb of the West Jordan house his family had rented two months earlier. A 19-year-old friend of his neighbors demanded his iPod and then punched Ruiz so hard in the back of his head he fell to the ground, unconscious. Ruiz went to the hospital with his second brain injury, this time a concussion. The youth was released with only a citation.
When Ruiz graduated, Brooke Gonzalez was excited for him to be able to leave behind the cruelty of high school. Finally, she thought, he would make friends. But after she started part-time again at the BIA in May, her work brought a harsh awakening. Every new client she meets, she pushes through to their social life, asking about friends. The reply is always the same: “I don’t have anyone. My family is sick of me.”
Brooke Gonzalez wipes away tears as she says that she and her husband are “very, very scared. We thought his adult years would be kinder.”
By mid-October, Ruiz, an undeniable fighter, had shaken off the concussion-fog that consumed him post-attack. On his own, he put an ad on the Internet—“struggling college student seeks work”—and now has two clients whose houses and yards he cleans.
In the warm, late-September sun, Ruiz shows off his new car and displays a shy, winning smile, but it doesn’t quite hide his pain. “I would like my old friends back,” he says. “It’s hard to leave someone.”
He and O’Neill talk on the phone occasionally. He knows Ruiz “is still hurting. Nathan doesn’t have stable friends, a girlfriend. He’s kind of stuck.” O’Neill hopes they can rediscover their friendship. He misses his friend and the innocent, carefree life they had before Ruiz’s accident.
Yet despite everything Ruiz has been through, O’Neill says his childhood friend is still “the same genuine person I met in third grade. I can tell he’s still there.”%uFFFD