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 Editorials | March 2007 
Raising Roberto (Again)
 Mara Altman - The Village Voice
A devastating brain injury in Iraq leaves soldier Roberto Reyes with a support system of one - his mother.
On January 26, 2005, Specialist Roberto Reyes Jr. was returning to base after a five-day mission when the Humvee he was riding in hit a mine just west of Baghdad. The force of the blast threw Reyes 20 feet and caused the ears of his comrades to bleed.
The sergeant who found Reyes crawling on all fours with his skull hanging open saw Reyes's helmet nearby. A shimmering liquid in it caught his attention; as he poured it out, he realized what it was: part of Reyes's brain.
Within 20 minutes, medics were stemming the flow of blood from Reyes's wounds. Despite losing about 40 percent of his brain on the battlefield, Roberto Reyes was kept alive by technology and techniques unimagined in earlier conflicts.
In previous wars, Reyes likely would have been just another casualty. During the first World War, eight out of every 100 soldiers wounded in battle died. In Vietnam, that number had improved to seven out of every 100. But in Iraq, only one in 100 injured soldiers have lost their lives.
Advancements in military medicine make the miraculous routine. New fast-clot bandages and coagulation powders can be poured directly into a wound. Small platoons of medics stay close by and reach wounded troops within 15 to 20 minutes, a significant improvement over the 30-minute average in Vietnam. Those medics can begin surgery immediately; helicopters are equipped as flying emergency rooms so that procedures can continue while soldiers are shuttled to larger aircraft to take them to the largest military hospital outside the U.S. at Landstuhl, Germany. Less than 48 hours after an injury, a soldier can be back in the United States while continuously hooked to life-support machines.
Four years since the war began, the military's polytrauma medical centers that handle brain-injured soldiers have treated 1,882 individuals, 30 percent of whom exhibit moderate to severe brain damage. The Defense and Veterans Brain Injury Center has estimated that between 10 percent and 20 percent of all returning soldiers have suffered some sort of brain injury.
Most don't suffer as extreme an event as the mine explosion that cracked Reyes's skull open. But brain injuries can arise without external evidence - they can result simply from the reverberations of a nearby bomb, the repetitive recoiling from shooting a gun, or riding a Humvee through rocky terrain for hours on end. "It's like putting a raw egg in a cup and shaking it," says Jane Higham, a project coordinator at the Brain Injury Association of New York State. "Imagine all the brain cells being torn apart and shredded."
Body armor can stop bullets, but it does little to guard from blasts or shaking. And unlike irreparably injured limbs that can be amputated, says Dale C. Smith, chairman of the medical history department at the Uniformed Services University of the Health Sciences, "You can't cut off a head. So we end up with all these bad head wounds."
At the same time Reyes, in a coma, was being airlifted to Walter Reed Army Medical Center, his mother, Aida Rivera, was busy at work in lower Manhattan as a security guard, surveying Wall Streeters entering a building. In her station, where she checked ID cards, her phone couldn't get a signal, so she didn't get incoming calls during her eight-hour shift.
As she headed home, Rivera received a call from her sister, Maria Mendez, who said she'd come by with a meal. If that seemed unusual, Rivera pushed the thought to the back of her mind as she wondered what to spend her latest paycheck on: some extra socks to send to her son in Iraq, maybe a night on the town. When she arrived home, she found 11 members of her family waiting fo her at the door. Their eyes were puffy and red; tears ran down their cheeks. As her sister opened her mouth to say "Robert," Rivera hurried to her room and slammed the door. She didn't want to hear more - prolonging the minutes before her son, barely hanging on to life, would so deeply change her world.
It had been Reyes's choice to join the military, but now it was his mother's lot, with little resources to deal with the repercussions. It wasn't the job she saw for herself in 2002 when her son joined the Army and she went off to pursue, at the age of 41, her own goals: working as a security guard, dating again, and continuing school. "I had expectations for myself," she says. "I was going to go back and study."
Instead, she says, she had no choice but to become her son's full-time caregiver. And it is Roberto who needs schooling now.
He's learning his ABC's.
Over and over, Reyes screams "Mom!" at the top of his lungs. He asks for milk, and he wears a diaper. He plays with plastic figurines of such characters as Donatello from the Teenage Mutant Ninja Turtles and the Undertaker from WWE. He's 25 years old and needs his mother now as much as he did as a young boy growing up on the Bronx streets, maybe more. She's begun to call him "Baby Bamm Bamm" - two years ago, his comrades called him Red Dog.
In his hospital room at the James J. Peters VA Medical Center Bronx, Rivera has put up pictures of her son before he had begun his second tour in Iraq, before she found herself talking with other mothers, comparing what percentage of brain their sons still had in their heads.
"Who's my boy? Who's my soldier?" she asks Reyes. He scrunches his left eye, his sign for not understanding.
"You're my sweet boy," she says, coming closer to her son's face. He's lost all peripheral vision and his eyes bulge a little. He's barely recognizable from the photograph posted to the wall of a muscular soldier standing in front of Saddam Hussein's palace. His urine bag hangs near the spokes of his wheelchair. The stomach tube that rests on his chest is his new mouth; nutrients and medications are pushed through it to keep him alive.
Reyes slightly nods his head, but Rivera can't get a smile; her son's face won't allow it.
This isn't the first time Rivera has talked to a reporter about her son's condition. She met Washington Post reporter Dana Priest while Priest was investigating shoddy conditions at Walter Reed, once the nation's top recuperative facility for war veterans. Rivera and her sister, who also shares caretaking duties for Reyes, condemned Walter Reed for maltreatment and disorganization and for saddling the family with a $3,519 bill for Rivera's stay at a hotel on the grounds of Walter Reed, Mologne House.
The Post's stories exposing conditions at Walter Reed, published in late February, caused the dismissal of the hospital's commander, Major General George W. Weightman, and forced the resignations of Army Secretary Francis J. Harvey and Army Surgeon General Lieutenant General Kevin Kiley. The stories also prompted inquiries into the state of VA hospitals around the country. By then Reyes and his mother had moved back to New York, but conditions at the local VA facility, she says, aren't much better. Rivera feels compelled to provide daily care: Near the beginning of their 17-month stay, Reyes was left unattended under scalding water during one of his weekly showers and the water caused a third-degree burn on his leg. His aunt found the burns when she saw Reyes squirming and moaning uncomfortably in bed.
In the Post series, Reyes was mentioned several times and was included in an Internet photo essay. As a result of the Post's reporting, conditions at Walter Reed and VA hospitals will likely improve. But that won't lessen the fundamental pressures on Aida Rivera or the others like her whose lives have been derailed to care for their family members whose minds and bodies will never heal.
"Because we can keep them alive, our society is trying to figure out what to do with these people," says Smith, the medical historian. "We don't have a good way to take care of them yet."
Every morning, Rivera makes the 12-block hike to her son's bedside. She's given up her own apartment, resigned from her job, and now, at 45 years old, has moved back in with her mother. Her mother cooks her meals and her 44-year-old sister gives her spending money. The family tries to stretch Reyes's Veterans Administration benefits.
One acknowledgment that the Iraq war is sending back more severely wounded troops was legislation in 2005 that created Traumatic Injury Protection Under Servicemembers' Group Life Insurance (TSGLI), which, for a dollar a month added to what soldiers pay for life insurance, pays out a maximum of $100,000 in the case of traumatic injury. Congress made it retroactive to the beginning of the conflict and has paid out $170 million to date.
Through his TSGLI and a monthly stipend calculated for a soldier with no dependents, Reyes should be receiving $2,700 each month, according to the VA.
On her way to the hospital, Rivera walks in Timberland boots and wears a Purple Heart dog tag around her neck, symbolizing the Purple Heart medal her son was awarded for his wounds in the war. She used to wear dress shirts and slacks for work; high heels with skirts or dresses to go out at night. But now there's no motivation for that - it's simply T-shirts, baggy pants, and throwing her long, dark, wavy hair into a ponytail. She's five feet tall and curvy; she's lost more than 20 pounds since her son came home. Caring for him, she says, is the most excruciating but effective diet plan she's ever been on.
When the nurses chatter just outside his room, the sound puts Reyes into a frenzy; he waves his hands around his ears. Rivera says a normal background conversation for him sounds like a garbage compactor full of aluminum cans. The noise annoys Rivera, too. Not just because it's too loud for her son, but also because, she says, it's painful to hear the nurses banter about the concerns of their lives - getting their nails done, a new weave they got at the hair salon, or what their kids need at school - when her life is so radically different from theirs.
Rivera's mother recently was diagnosed with breast cancer; her daughter is going through a difficult pregnancy; her first husband (Reyes's father) died of brain cancer in December; and doctors recently diagnosed her sleeplessness and crying as symptoms of depression. She was prescribed Paxil, but so far she doesn't think the antidepressant is helping. Rivera tells the nurses to be quiet, the same way she has each day for the 17 months her son has been there.
"Can you keep it down?" she asks while standing close to the nurses' station. "Robert can't take the noise." Soon, however, the prattle picks up again after Rivera has shut the door.
Rivera begins her daily routine: She turns on the two televisions with the volume down low and loads a DVD into Reyes's laptop.
"Papi, you want to watch your wrestling or Rocky?" she says, showing him the discs.
She has more than 30 of his DVDs, most of them bought cheaply on Baghdad's streets, but he watches the same two movies every day. He's lost his short-term memory.
He says nothing. She points to Rocky. Nothing. She points to the wrestling disc and he slightly bows his head. She puts the disc in the computer and gives him a magnifying glass so he can hold it up to the screen.
She checks the whiteboard at the foot of Reyes's bed to see if "Jimmy" is scrawled there. When Reyes first arrived at the hospital, he received regular physical therapy and was beginning to make progress, able to take short steps after several weeks. Then months went by without therapy; he has now regressed and can't even stand up. To make sure the new physical therapist, Jimmy, comes, Rivera asked him to sign the whiteboard after each session. She says he's still only showing up once a week instead of the required three times.
Asked about Rivera's complaints, James E. Connell, the director of community and government relations at the James J. Peters VA Medical Center, says that because of privacy regulations, the VA cannot speak about specific patients. But he did say that families dealing with a traumatic injury are often extremely sensitive, and because of their stressful circumstances are bound to find faults. He insists that resources and staffing are not an issue at the facility, and that each patient is regularly evaluated so that treatments are tailored to changing needs. Scheduled physical therapy sessions, he points out, could be canceled if a patient is experiencing muscle spasms, high pain levels, or increased anxiety. But Connell adds that it's common for family members to feel that progress, attention, and recuperation are not happening as fast as they'd like. "A family's response to a tragedy like this is visceral and it's real," Connell wrote in an e-mail, "but it is not necessarily based on the standards of medical practice."
At 5 p.m. it's time for one of Reyes's 22 medications. But Rivera says the nurses always seem to forget. About a half-hour later, Reyes begins to squirm from muscle spasms. Rivera reminds the nurses. She wonders about the other veterans on the floor who don't have mothers on hand to care for them. At 6 o'clock, an hour late, Reyes's pink painkiller is being pushed down his stomach tube. Each time Rivera watches Reyes load up on medications, it's hard for her not to recall his stubbornness as a child; he wouldn't even take a Flintstones vitamin.
Reyes often responds to a day of his mother's constant attention by wanting more, like a toddler would. He repeatedly asks her to help him put on his Nike shoes, although his feet are swollen and the shoes will only irritate them more. At other times, he throws hand signals and yells mumbled curses, seeming to react to something only he can see.
In moments of frustration, often in tears, Rivera takes her pack of Newports and rushes down the hall to the smoking room. A study released last year in a VA-sponsored forum suggests that such caregivers suffering from extreme stress age prematurely, and that stress can take 10 years off the life of someone like Rivera. From the time she enters the hospital to the time she leaves, around 10 p.m., Rivera smokes half a pack, but there's never enough time to get a fix before she hears her son screaming her name again.
She rushes back to be with him, but few are rushing to help Rivera herself.
Organizations like the National Military Family Association have paid attention to the concerns of parents like Rivera since the war began. They recognize that parents often feel compelled to provide full-time care and don't want to hand over their injured sons and daughters to institutions. "Parents don't want to put children in nursing homes," says Barbara Cohoon, deputy director for government relations for the NMFA. "But they are losing their jobs, feeling stressed out, and getting burnout caring for them."
The NMFA and the Wounded Warrior Project, another not-for-profit organization, have convinced Senator Hillary Clinton to promote legislation that would directly benefit the caregiver of a severely injured vet. In coming weeks, their proposal will be introduced as an amendment to the Heroes at Home Act, which was passed and funded last year. The new program is modeled after one used in the San Diego VA hospital for spinal cord injuries and would, through the VA, provide education about how to care for brain-injured patients, certify caregivers, and then pay them a salary. "This is vital," says Jeremy Chwat, the executive vice president of the Wounded Warrior Project. "They are providing the care anyway. It's better that they're properly trained and get paid."
What Rivera knows of traumatic brain injury - or TBI, as it's referred to in hospitals - she learned herself. The military gave her a quick rundown when she arrived at Walter Reed, but she was in shock and remembered little. She doesn't have Internet access at home, but as her son recovered, she used a computer in the hospital lobby to search for information. She's watched the speech therapists work with him and she knows how to temper his pain by putting pillows beneath his arms. But she says the thing that stresses her out the most is not knowing what's going on in her son's mind.
Connell says that while it's helpful for a family member to have knowledge of a loved one's injuries, it's not the best idea to be a full-time caregiver. When traumatically injured veterans are discharged from the hospital, their monthly stipend goes up; the extra money is available to help pay for a professional caregiver, someone other than a family member. "Experts in the field of care for the catastrophically injured will typically recommend that the family not be the primary caregiver for the very obvious reason that it is so incredibly physically and emotionally taxing," Connell wrote in an e-mail.
Rivera, however, has decided she'll take care of her son, and now she wants Reyes to eat again, something he hasn't done in months. Nurses leave the hospital tray of food on a table far from his grasp, covers still on the plates and the silverware wrapped up. It angers Rivera that the nurses don't even give him a chance. If she weren't there the one moment he may be ready to take a bite, the opportunity would be lost. In the hopes that he will eat, she spends much of her money buying food each day - Reyes's old favorites like a slice of sausage, bacon, and mushroom pizza from Silvio's down the street. After classes at Columbus High School, he used to get two slices. He'd stack one atop the other and the 227-pound boy would wolf them down.
Rivera cuts a warm slice in half and holds it up to his mouth.
"Maybe if you take a bite and start chewing and taste the flavor, you'll remember you like eating," she says.
He contorts his eye, leans his head on his hand.
"Mom," he says. "Put my sneakers on!"
She puts down the pizza and feeds him high-protein formula through his stomach tube.
While in Iraq, Rivera heard from Reyes every other week. He didn't say much, but told her there was a woman named Lily in his life and he had a surprise in store when he got back. She dreamed her son would make her a grandmother, and she suspected Lily was going to help.
Stuffed animals sit on the shelves - given by friends who don't call anymore, who don't stop by anymore, even though they all said they would. A Purple Heart hat is propped above his bed, and on a poster on the wall facing Reyes, the WWE Divas are oiled up and flexing. His mother hopes the women will spur a memory, recapturing something of the ladies' man he used to be. In albums tucked away in his dresser, photos from the past show him posturing - chest out, shoulders back, and biceps bulging, with tattoos of the United States and Puerto Rican flags - with "player" or "lady killer" scrawled beneath the images in his own handwriting. She knows he won't ever be the same, but refuses to believe he will never get back some of his old self.
Rivera leans over his bed. "You going to get married?"
Reyes contorts his face. She thinks about the man he was going to be. He was going to go to college after completing his military service, he was going to join the NYPD and patrol the Bronx streets.
"Are you going to have babies and name one ..."
She stops mid-sentence as Reyes rubs a towel across his chapped lips.
She admits that curiosity got to her one day, and with her sister's help, she tried to contact Lily, thinking maybe, just maybe ... but she learned that Lily had recently married.
"Take me home!" mumbles Reyes.
"You'll be home soon, Papi," says Rivera, stroking his shoulder.
"Mom!" repeats Reyes, rattling the rail on his bed. "I want to go home!"
But there is no home to go to. Rivera and Mendez are currently working with an Army caseworker under the Wounded Warrior Program. They are trying to come up with enough funds to build Reyes an adaptive home. A veteran with 100 percent disability can apply for a grant of up to $55,000 through the VA to help with modifications: outdoor and indoor lifts, ramps, and widened doors. Brian Bixler, chief of adaptive housing for the VA, says that 200 veterans from Iraq and Afghanistan have qualified for adaptive-housing benefits, but only 60 are in the process of actually using their benefits. Building, buying, or even adapting a home in any state often costs more than what the benefit allots. "The rest of the funding is their responsibility," says Bixler of the veterans. Ground hasn't been broken for a home for Reyes yet; finding all the necessary funds makes moving out of the hospital a longer process. Part of the caseworker's job is seeking out more money from various federal, state, and local programs as well as not-for-profit agencies.
When the home is finally built, Rivera plans to live with her son and continue to be his full-time caregiver. But for now, she worries about how to tell her son about Lily. She decides just to say the words.
"Robert, Lily got married. She got married."
He says nothing. |
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