Mother learns to let go as money runs out for son’s care
SAN DIEGO — Despite everything, John Gibson remains handsome. Lush, brown hair tops his 6-foot-3 frame. His shoulders are broad. Yet Gibson’s mouth is frozen in a wide oval revealing his teeth, and his elbows bend at a 30degree angle so that he appears fearful, like the figure in Edvard Munch’s painting “The Scream.” He is 26 years old.
The young man lies clenched for most of the day atop a Versa Care P500 orthopedic mattress in the same San Diego bedroom where, as a teen, he would launch into bed Tarzan-style from a rope he had rigged from the ceiling. His desk and computer are gone, replaced by cabinets filled with medical supplies and extra towels. His skateboard hangs like a portrait on the wall.
His mother, Madelyn Bennett, brought him home five years ago after he suffered irreversible brain damage during a drug binge at UC
Nurse Valerie Agustin is one of John Gibson’s caregivers at his San Diego home. The 26-year-old suffered brain damage in 2010 after a drug binge at UC Berkeley’s Cloyne Court.
Berkeley’s Cloyne Court student residence. The former Cal student can no longer walk, speak or even swallow. A tube in his stomach provides nourishment, and another in his trachea removes secretions. His ability to think is unknown.
Bennett sees to it that her only child receives around-theclock care at home from a team of nurses, aides and therapists. But the money that has paid for his care — a legal settlement that supplies $435 a day for home care workers and medical supplies — is about to run out.
With the prospect of relying on Medi-Cal alone, Bennett is fighting what appears to be her son’s only option: moving into a state-funded nursing home. She has learned that better facilities either won’t take Medi-Cal or won’t accept people with a tracheotomy. She has phoned state agencies and civil rights attorneys for help. She has written to the president. To no avail. “I’m resigned to the fact that I am saying goodbye to my son and sad that I’m most likely sending him off to what may well be a fate worse than death,” Bennett said. “I’m scared that he will suffer.”
Gibson’s parents are not only running out of money, they’re running out of time. Bennett and her husband, Eric Gibson, are in their 60s. Doctors say their son could live another 50 years. So Bennett is stepping back. “I used to go and talk to him for a long time, every day,” Bennett said. “Now I don’t. I think it’s better that he get used to me not being there all the time.”
Attentive care at home
In the family’s San Diego ranch house, physical therapist Spencer Goff hooks his powerful left arm beneath Gibson’s withered legs and lifts the tall young man into sitting position, as he has done twice a week for five years. Soft jazz plays on the radio. Goff is part of the team of home health workers who massage and stretch Gibson’s contracted body every day, turning him to avoid bed sores, clearing his drool.
Nurse Valerie Agustin wraps Gibson’s claw-like fingers around a towel roll to keep them from contracting into fists. Together, she and Goff maneuver Gibson into a metal frame where he stands for half an hour, harnessed for safety, so his reed-thin legs can retain some strength. Goff coaches Gibson on holding his head up.
Each day, Agustin uses a sling called a Hoyer lift to hoist Gibson into a teal-green wheelchair and wheels him into the garden.
“I talk to him all the time,” Agustin says as she massages Gibson’s rigid hands. They sit beside a grapefruit tree listening to the wind chimes. Gibson’s eyes flicker but do not focus. Bennett, beside them, claims her son can answer yes-or-no questions by lifting a finger or two. But on this day, Gibson does not respond, despite his mother’s threat to make him listen to country music by the Dixie Chicks if he doesn’t.
From dream to nightmare
Bennett’s ability to joke has survived the mosaic of emotions that only a parent who has seen her smart, exuberant child tumble from the height of opportunity into the depths of hell can understand.
She was her son’s champion from the beginning, a mother who won battles on his behalf, if not wars. It was she her son turned to when he needed someone to stand up for him, as he often did growing up.
In 2006, Gibson landed in Juvenile Hall for tossing fireworks at his girlfriend’s father’s car. A courtroom plea from Bennett helped to get the charge reduced from felony attempted murder to “charring concrete,” an infraction.
The family’s world changed in 2010 when Gibson, a 21-yearold junior at UC Berkeley, overdosed on an assortment of drugs, then survived a heart attack and loss of oxygen to his brain as housemates delayed calling 911 for hours.
In her living room, Bennett recalled that unbearable time.
“Right afterwards, I was furious. He had a great life in front of him. He had plans. He wanted to work for Doctors Without Borders. He wanted to be a trauma surgeon.” She paused. “I spent a lot of time yelling at him when he first came home. I said, ‘You have ruined everybody’s f— life.’ ”
Bennett said her husband is still angry. A network engineer, his reaction to the tragedy has been circumspect. He has not pushed lawsuits, demanded policy changes or written to the president. Bennett, as audacious as her son once was, has done all of that on behalf of the boy who had the brains to get into UC Berkeley and the brazenness to get into so much trouble.
John Bennett Gibson grew up playing cello with a youth symphony. He ran track and excelled at the pole vault. Though he never lived in tony La Jolla, he was bright enough to qualify for enrollment in its coveted public schools. There, he earned the top score on Advanced Placement tests in English and U.S. history. But on tests he disapproved of, he wrote “tests suck” on the answer sheet.
At UC Berkeley, where Gibson majored in peace and conflict studies, a girlfriend called him “the most interesting guy I’ve ever met. Everyone wanted to know him.”
He was booted from his dorm in freshman year for lobbing paint balls off the roof. But he turned his punishment into a college man’s dream by taking up residence in a sorority. Gibson eventually moved into the Cloyne Court Co-op, a tremendous brown-shingle building built in 1904 by John Galen Howard, the architect of UC Berkeley’s famed Campanile, Memorial Stadium and Greek Theater. With 150 residents, Cloyne was perhaps the largest student co-op in the nation and had become, by Gibson’s time, a place devoted not only to the arts — murals covered its interior walls and music filled its halls — but also to pleasures of Bacchanalian proportions.
As one former resident reviewed the house on Yelp, “Drugs of every color, taste, clowns juggling purple butterflies ... ahh, Cloyne, how I miss thee.”
What happened that day
Early in the morning of March 18, 2010, Gibson slipped into his bed at Cloyne Court after a night of drinking, smoking pot, sniffing cocaine and ingesting the sedative ketamine.
What happened next is pieced together from student depositions and the police report quoted in court documents. Sometime in the late morning, a woman who lived across the hall knocked on Gibson’s door to get math help from his roommate. When no one answered, she walked in and woke the roommate. They noticed Gibson lying askew on his bed looking pale and breathing rapidly. They tried to wake him but couldn’t.
They did not call 911. Instead, the woman said, she wandered around the huge house looking for someone who knew what was going on with Gibson. By some accounts, the roommate and another student performed CPR on Gibson before dragging him into another room.
At 1:06 p.m., someone called 911. By then, Gibson had had a heart attack, and his brain had been deprived of oxygen long enough to destroy it.
Bennett sued the UC Board of Regents, which owns Cloyne Court, and the Berkeley Student Cooperative, which operates 20 properties for nearly 1,300 students. She accused UC and the property managers of failing to protect students by willfully ignoring Cloyne’s culture of tolerance for drug and alcohol abuse.
A judge allowed UC to escape liability because it rented out the property, charging $1 a
year. Bennett settled with the Berkeley Student Cooperative in 2013 for $750,000 — most of which went to lawyers, insurance and Medi-Cal. Gibson and his parents got $253,000.
But Bennett imposed a settlement condition: Cloyne would have to go drug- and alcohol-free, or no deal.
Almost four years to the day after Gibson’s tragedy, after an emotional, all-night debate, the co-op board of mostly students voted to evict nearly every Cloyne resident and transform the co-op into a drug-free, academic-themed house. Several students immediately vilified Bennett on Facebook and e-mail. One sent her an expletive-laced message declaring, “You personally ruined the life of 150 people.”
Today, even cigarettes are prohibited at Cloyne, and its website advertises “substancefree events and activities as well as professor dinners, extended quiet hours and a co-op-wide lecture series.”
Going home
In San Diego, Bennett remembers how it was when her son returned from Berkeley, not in cap and gown but in a coma.
“I gained 50 pounds, and my hair turned gray,” she said of those early days. “My back went out from lifting him and turning him.”
Things improved when the family hired the nurses, aides and therapists.
“We’ve spent over a million dollars of our own money: my pension, our IRAs, and we’ve refinanced our house,” Bennett said. “John and I had a great relationship, which is part of why I’m willing to do what I do.”
She wants to continue doing it. She says her family paid less to keep her son at home last year than what Medi-Cal would pay for nursing home care. But Bennett believes her new fight — getting California to require affordable, therapeutic homes for brain-damaged people who aren’t rich enough to afford private placements — will be harder than transforming Cloyne Court.
“Each governmental agency I contact is unable to help me, other than to refer me to yet another agency that cannot help me either,” said Bennett, who has scoped out nursing homes for her son that she said smelled like urine, and whose residents seemed violent or mentally ill.
Bennett expects her son will outlive her.
For now, though, she wants him at home.