Survivor is learning to walk, talk, eat
STOCKTON — Sam Maxwell’s hands shake as he raises a cup of water to his mouth.
Water trickles from the corner of his lips, and he coughs as he swallows.
Ernest Mena, his caretaker, gently pats Sam’s back as he leans forward in his wheelchair.
“Cough some more,” Ernest says as he wipes Sam’s mouth.
“You OK?” Sam’s mother, Wendi Maxwell, asks.
“Monday. Tuesday. Wednesday,” her son, 33, replies in a gravelly, barely intelligible voice.
He recites the days of the week when he has trouble clearing his throat. It helps stop him from gagging.
Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday — every day is a struggle for a man who, a year ago, went to an electronic music concert at an underground Oakland venue called the Ghost Ship.
Dec. 2, 2016 was a Friday, and Sam felt like dancing that
night, which is what he was doing on the second floor of the warehouse building at 31st Avenue and International Boulevard when he noticed smoke. He felt the floor warming through the soles of his thick boots. Fire.
He noticed people fleeing toward the makeshift stairs, a patchwork of pallets and other pieces of wood nailed together to make steps. The bottleneck cleared enough for him to make it onto the stairs. The smoke thickened and the lights went out. He used his jacket to cover his mouth and felt his way down the stairs as flames licked at his fingers and forearms.
He got outside, covered in soot as if he’d been cleaning chimneys. He was hoarse, but he could talk.
“I’m alive. I’m out,” he texted his mother.
Thirty-six people died of smoke inhalation at the Ghost Ship, trapped on the second floor with its narrow pallet steps, or on the first floor amid a dark maze of tapestries, pianos, statues, makeshift rooms and twisting passageways. It was the nation’s deadliest structure fire in more than a decade.
Initially, Sam had no idea how bad his injuries were. He walked into a convenience store looking for burn cream. But soon his throat began to swell from the soot and smoke he had inhaled. He had difficulty breathing. A friend drove him to Highland Hospital.
“I thought three to five days, and I’m out of here,” Sam, 33, says, drolly recalling his thoughts at Highland.
Within hours, doctors transferred him to the Bothin Burn Center at Saint Francis Memorial Hospital in San Francisco. He was intubated to prevent his throat from closing further and cutting off his airflow.
For six weeks, he was in a medically-induced coma.
In early February, doctors transferred Sam to Alta Bates Summit Medical Center in Oakland, where he stayed until his April 25 discharge.
His parents, Wendi and Bill Maxwell, stayed at the houses and apartments of six different friends and family members to be near him. After 143 days, they took him back to their Stockton home to care for him.
A year after the fire, he is learning how to stand, talk and walk again. Every day he practices walking the 50 feet from the living room to his bedroom, which takes his parents about 10 seconds. It takes Sam, who uses a tall walker with forearm supports, five minutes.
“It’s very tiring and requires his full concentration,” his mother says. “That’s the thing the rest of us have to keep remembering. Everything that he does is work. It’s all work.”
Along with pills to control ataxia, the lack of muscle control that causes his hands to tremble, Sam takes medicine for post-traumatic stress disorder.
The family is still without a definitive diagnosis of what happened to him. The working theory is that his condition was caused by carbon monoxide poisoning from the smoke inhalation, and that has affected the part of the brain that coordinates communication with the nervous system. Sam doesn’t have cognitive problems, but he’s had to learn how to breathe on his own.
Sitting up is tiring. So is eating.
“Especially eating,” Sam says, his hands trembling more furiously the closer they get to his face.
He uses adaptive forks and spoons.
“He doesn’t have the dexterity with his fingers, so he’s got to grip it in his fist,” his father says, palming a spoon with a black rubber grip.
His speech is guttural. His parents often must interpret what Sam is saying to guests.
“Correct,” he says after a satisfactory interpretation.
In his first interview since the tragedy, Sam, sitting in his parents’ living room with teak veneer and old-growth redwood walls, doesn’t want to talk about the fire.
“Part of me is just glad to be alive, but part of me would prefer my old independence,” he says, peering through sunglasses.
He’ll be in Oakland on Saturday for a private memorial service with families of the Ghost Ship victims.
“I just hope I can help someone’s parents,” he says. “My experience will somehow benefit others.”
His parents wrestled with the decision to attend.
“There’s nobody else who knows what we’re going through except for those other parents,” Wendi says. “And we don’t know it the same way. Our son didn’t die, but he doesn’t have the life he had before that fire. The life that he had is gone.”
Bill adds, “After talking to Sam, we decided that it would probably be a good thing for all of us.”
A graduate of California College of the Arts, Sam is known to friends as Peaches, a nickname he got when he was 12 and studying for his junior black belt in aikido. He wore fruit-scented cologne. Every student had a nickname in the class, and Sam became Peaches.
“He says that person died,” says his mother, a retired state administrator who is blunt even when people stop her in the grocery store aisle. How’s Sam? “And they want you to say, ‘He’s fine’,” Wendi says. “And he’s not. We don’t know what’s going to happen to him. And it’s really hard, because people want you to comfort them.”
Ernest arrives at 8:30 a.m. on weekdays.
“I’m their time clock,” he says. “I get here and everything starts.”
Sam’s parents pay Ernest out of pocket. They have a crowdfunding page to raise money for things insurance won’t cover, like leg braces and swimming therapy.
Their son’s week is filled with therapy appointments — physical, occupational, speech and psychiatric.
“He pretty much works a 40-hour week,” Wendi says.
Sam, who had worked as a bookseller for Walden Pond Books on Grand Avenue near Children’s Fairyland, usually takes a two-hour nap every afternoon. He goes to bed when he stops reading.
“Sam reads way too much,” Wendi says.
When he was in the hospital, they read the “Harry Potter” series together.
“We started reading it aloud for speech stuff and decided to read the series,” Wendi says. “So I got two sets of them, and we read all the Harry Potters. It was really fun. And then I thought, what are we going to read next?”
He chose Shakespeare. Then it was “The History of the Decline and Fall of the Roman Empire” by 18th century English historian Edward Gibbon.
“She prefers murder mysteries,” Sam says, smirking. He says he owns between 2,000 and 3,000 books. Why books?
“I like the medium of communication with the deceased,” he says.
Bill, an archivist for a local bank, once owned book stores, including The Harvard Bookstore and The Bookmark, in Stockton, and his son started cataloging for him as a preteen. More than one room in the house is filled with shelves of books.
“He had vast experience,” Bill says, chuckling.
Sam’s currently reading “Don Quixote” for the second time, because he wanted humor after reading so much nonfiction this year. He uses two shaking hands to turn each page.
On a recent day, Sam’s parents moved his stuff out of the Oakland house he used to live in with friends. Sam and his roommates were evicted by a landlord who wants to sell the house, which is close to where the Oakland A’s want to build a stadium.
“What timing,”Sam says dryly.
His leather sofa, rugs and books were put into storage. His rattan throne chair is now in the family living room. Sam’s friends helped pack the U-Haul.
“Sam’s friends continue to come visit,” his mother says.
The Stockton home’s backyard backs up to the Smith Canal, which is a short paddle to the San Joaquin River. Baxter, Sam’s terrier-poodle mix, rolls on the couch.
Besides his friends and his job, what Sam misses most is his favorite East Bay cuisine: Udupi Palace, an Indian restaurant on University Avenue in Berkeley, and Raj Indian Cuisine on Piedmont Avenue in Oakland.
“We got a serious Oasis addiction while Sam was in the hospital at Alta Bates,” Wendi says, referring to Oasis Food Market, a Middle Eastern grocery store and cafe on Telegraph Avenue in Oakland. “We’d go down and pick up stuff and bring it back for Sam.”
Sam didn’t want to forget Souley Vegan on Broadway in Old Oakland.
“The mac and cheese is bomb,” he says. “The yams are good.”
Bill lifts one of his son’s arms so he can put a hoodie on him. He places a cup with a straw and top — an adult sippy cup — on the table. Sam takes a sip before returning to an animated discussion about the genius of Kanye West, among other topics.
He’s looking forward to Jan. 16 when he’s going to see Marilyn Manson perform at the Fox Theater.
He won’t be dancing on his feet. But perhaps, one day.
“He’s going to get out of the chair,” Bill says. “It’s just taking way longer than anybody anticipated.”
“They want you to say, ‘He’s fine.’ And he’s not. We don’t know what’s going to happen to him. And it’s really hard.” Wendi Maxwell, on facing questions about her son’s recovery from the Ghost Ship fire