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Brain in a Box

Silver City resident Joe Zamora recovers from traumatic brain injury, test-driving a new system of therapy that offers hope to others in New Mexico and beyond.

Story and photos by Donna Clayton Lawder

 

Joe Zamora holds out a thick, bright orange notebook, and with a playful smile says, "This is my brain." He pauses for dramatic and perhaps comedic effect, then flips the binder open to reveal its numerous compartments, slots and dividers, a detailed daily calendar and diary system and an array of pens in rainbow colors.

Joe Zamora with his BIRK, the Brain Injury Recovery Kit. He refers to the big orange binder as his "brain," as it helps him organize and remember the day-to-day details of life.

"I mean it! This remembers everything for me. It fills in the gaps that I have in this other brain," he says, pointing to his head.

With striking black hair and dark eyes rimmed with thick black lashes, Zamora is a ruggedly handsome, kind-faced gentleman, as quick to smile as he is to well up with tears.

"My wife says I cry at the drop of a hat, and that's dangerous for me 'cause I wear this cowboy hat all the time," he says with a laugh.

Though he's prone to lose his train of thought mid-sentence, Zamora picks it up again quickly when prompted by a word or phrase. His sleeveless muscle shirt shows off his fit physique; his black cowboy hat and boot-cut jeans are evidence of what he laughingly calls his "cowboy machismo."

Zamora jokes about being the "poster boy for brain injury," the title the Silver City resident took on with good nature and enthusiasm earlier this year, representing the Brain Injury Association of New Mexico (BIANM). His handsome Hispanic-Apache mug graces the group's calendar, along with a poem, "Tears of a Cowboy," that Zamora wrote eight months after he got back home from the hospital following his injury. He's written a song about his experiences, honoring the other brain injury victims he now calls friends, and is passionate about wanting to write a book to spread awareness about brain injury.

Zamora also is featured, along with his wife, in Every 21 Seconds: or Why I Scream at the Refrigerator, a 60-minute film funded by the government-appointed New Mexico Brain Injury Advisory Council (NM-BIAC). The film is narrated by actor Woody Harrelson, and was produced by renowned New York photographer Laura Napier and producer Doug Claybourne, who has worked with Francis Ford Coppola and Steven Spielberg. Claybourne's film credits include Apocalypse Now, The Mask of Zorro and North Country, filmed partly in the Silver City area in 2005.

Every 21 Seconds tells the stories of eight real-life victims of traumatic brain injury (TBI). Zamora has no problem remembering the names of these new friends, and counts them off on his fingers, describing how they received their brain injuries: two were injured by drunk drivers, one was assaulted by thugs, one was injured while serving in the Iraq war and another was shaken as an infant. One woman simply tripped on an uneven sidewalk as she stepped off a city bus.

"It can happen to anybody, and it changes your life just like that," he says with a snap of his fingers.

"I'm lucky, in so many ways," Zamora says. "God spared me my ability to articulate. It didn't mess up my face. I don't have those kind of scars," he says humbly. "Everybody's seen [fomer ABC News co-anchor] Bob Woodward on the television, I think, how he had to have a piece of his skull removed to relieve the pressure on his brain and it flattened out his head. That didn't happen to me. People could see me on the street today and never know I suffered a brain injury." He pauses for a moment, takes a breath and blinks back tears. "It's all inside here," he says pointing to his head, then his heart. "That's where my scars are. That's where the changes are."

It's not just his looks, but this change in heart and awareness and his ability to tell his story and share the facts about TBI, Zamora says, that have turned him into an advocate for brain injury sufferers — giving public lectures, guiding other brain injury victims through paperwork and programs, raising awareness of the plight of soldiers returning from the war in Iraq. He's addressed groups at New Mexico State University and Western New Mexico University, testified before the state legislature, and spoken to groups in Santa Fe, Albuquerque and Las Cruces.

He quotes some sobering statistics on brain injury: 5.3 million Americans suffer with it right now; a new victim suffers a TBI every 21 seconds; an estimated two-thirds of soldiers and Marines returning from Iraq suffered a brain injury in service, many undetected at their time of discharge; and, regardless of how they got their injury, fewer than two out of 10 TBI sufferers receive proper post-hospital care and support necessary to return to a meaningful life.

 

Though he counts on an orange binder to help him remember just about everything these days, there are some things Zamora can't forget. One of these is the date of his injury — May 20, 2004 — the day he refers to as "the end of my life, and the beginning of my new one."

On that warm day in early spring three years ago, Zamora was in Deming, attending his aunt's funeral. The services over, the family was doing what families do under such circumstances — dealing with the loss of their loved one, sharing food and memories, trying to get back to normal. A family member asked Zamora if he'd like to ride one of the horses on the property. The horse, Belle, liked to be ridden bareback, one of Zamora's specialties.

What he remembers is that he took the horse out for a ride, something he had done often and was skilled at. One fall — a tumble he can't even remember — and Joe Zamora's life was changed forever.

He was rushed to the nearest emergency room, at Mimbres Memorial Hospital in Deming.

"I was very lucky in that regard. There's what they call the 'critical hour,'" Zamora explains. "When there's a brain injury, you need to get treated right away. You have a limited time to try to save as much of the brain as possible."

Stabilized in the Deming ER, Zamora then was flown to Thomason Hospital in El Paso, where he received emergency care in the facility's Level II trauma center.

"I was in a coma there for eight days," he says.

After awakening from his coma, Zamora was discharged from critical care at the trauma center and received eight weeks of rehab care.

But, as brain injury experts will tell you, the hardest work in recovering from a traumatic brain injury occurs after hospital discharge. The effort to retrain the brain to do even the simplest tasks, the frustration of finding oneself unable to recognize loved ones or remember significant life events, take a huge toll on those with TBI. Without the proper tools and support, TBI can lead to depression and isolation.

In his first months back at home, Zamora suffered from seizures and loss of balance. "I fell in the shower a lot," he recalls. As the worst of his pain ebbed, he could take less of his original medications but was placed on others to help with the seizures and other medical and psychological issues. "I can't even remember all the things I had to take, and people had to help me remember to take it all," he says with a laugh.

He pauses, his face suddenly serious. "My poor wife. She had to help me with everything," he says, his eyes misting up. "I could not have made it without her." He takes a deep breath. "There I go, dropping my hat again," he says, making light of his tears.

 

Luckily for Zamora, he and his family received a large dose of help in the form of a huge orange box. In November 2005, he was one of New Mexico's first four patients to receive the Brain Injury Recovery Kit, called the "BIRK" for short.

The BIRK is the innovative creation of Lisa Keller, a brain-injured patient herself, and her caseworker, Sandra Knutson. It is designed to help a TBI victim get back to as normal a life as possible.

Zamora opens the large orange cardboard box to reveal the simple, neatly packaged tools inside: workbooks, wristbands, pens, a voice recorder, color-coded folders and a set of DVDs.

The BIRK employs four supportive elements key to TBI recovery: a "buddy" to help keep track of things until the victim learns to use the system; reminders to rest, as the injured brain tires more quickly; encouragement to accept the condition, which helps to alleviate frustration; and tools to help establish routine, because repetition strengthens memory.

Zamora pulls materials from the box, explaining how they are useful to TBI victims — how these tools help patients cope, help them remember, help them recover what they can of their lives and personalities.

"Not everything helps everyone, but they tried to put a little bit of everything in here so everybody can find the things that help them," he explains. "And sometimes the tool helps you for a while, and when you get a little bit better, you don't need it anymore." He breaks into a broad smile. "That's a really good thing!"

Zamora traveled with a family member to Las Cruces once a week for eight weeks to get training in how to use the BIRK.

"I'm a very determined person," he says. "I don't fail when I take something on."

The BIRK's system of prompts and reminders includes segments specifically aimed at the injured patient's family, to help them deal with the reality of TBI, in hopes of gaining patience through understanding of the injury's impact on their loved one.

"Having a buddy is the first step," Zamora says. "The first DVDs are to help them understand things and to learn how to help (the brain-injured person). This partnership is the main thing, and my wife was my buddy."

He notes that a large percentage of couples break up after one person sustains a TBI, owing to strain on the relationship and the personality changes that often come with the injury.

"It's something like 98 percent of marriages don't make it," he says, then concedes that three years after his injury, he and his wife have just recently separated. "Man, after all that, after all she went through with me, I thought we were going to be in that two percent," he says, looking down and shaking his head. Actually, various brain injury organizations list the divorce rate among couples in which one partner sustains a TBI as anywhere from 75 to 90 percent. Though not quite the ominous odds Zamora quotes, the cards are stacked against a victim's marriage surviving.

Having made it through those difficult first steps to recovery with his wife at his side, Zamora now relies on a network of people to get him through his days. He names his mother and father as key supporters, and then rattles off a whole host of others — secretaries in TBI support organizations and at State Sen. Ben Altamirano's office, therapists and friends.

"It takes a lot of people to replace that one special buddy," he says with a smile. "I'll never really replace my wife, but thank God I have other people in my life who can help me fill this gap. Others are not so lucky."

 

Luck aside, the strength Zamora showed early on in his recovery process also certainly played a role in his success thus far. In the film, Every 21 Seconds, he is shown walking from Deming to Chimayo, a journey of around 350 miles, just a few months after he was released from rehab.

Though he was unconscious most of the time he was in the trauma center in El Paso, his room constantly was filled with family members praying for his recovery. His mother had made a promise to God, he says, that if Zamora recovered, she would go to Chimayo.

"I decided to keep her promise for her," he says. And while his mother had promised to drive to Chimayo, Zamora insisted he would walk it. Though he admits he was physically ill-prepared for the arduous trip, he managed to walk 30 to 40 miles per day, his father following behind in a trailer to make sure he was safe. It took him a little more than two weeks to complete the journey.

To build awareness of brain injury, Zamora carried a huge cross on his back with names of TBI victims written on it. As word of his mission spread, people with brain-injured loved ones would call him on his cell phone and he would add their names to the cross for the next day's journey.

To keep his mind off his blistering feet and aching legs, Zamora says he kept his brain-injured friends in mind and focused on his goal of bringing awareness to the TBI cause.

 

Clara Holguin, executive director for the Brain Injury Association of New Mexico (BIANM) is well acquainted with Zamora and his case.

"Joe's a real inspiration," she says, "a very strong and determined man, and a leader. He's now a guide to other people with brain injuries. He helps them get through their paperwork and into the system."

Holguin outlines the usual process a TBI victim goes through: "Once they leave critical care, and if they have some insurance and can sit up for three hours a day, they then go to a rehab hospital," she explains. "Here in New Mexico, we have six rehab hospitals."

TBI patients without insurance can wind up being released from critical care to home, where Holguin refers to them as "the walking wounded," able to get around but with no stimulation or support to regain memory or physical abilities. "That's not a good situation, of course," she says. Others may wind up in nursing homes, which she says is not appropriate for the level of specialized care they need.

"Then they can typically get a couple month's outpatient rehab, that's if they have a family member or someone who cares about them to advocate for them, and can get the most care available to them," she says.

Headquartered in Albuquerque, the BIANM provides educational and advocacy services, information and ongoing phone support to TBI victims and their families. The group, founded in 1984, was instrumental in establishing the government-appointed Brain Injury Advisory Council. BIANM also fought to ensure the passage of the New Mexico Brain Injury Services Fund, through which $5 of every speeding ticket goes to a TBI Trust Fund to assist New Mexicans with traumatic brain injuries.

But often — too often, Holguin says — TBI victims still don't get the care they need. Insurance companies don't pay for cognitive rehab, she notes, and in New Mexico, there is no long-term placement for TBI patients.

"That's why someone like Joe is so important," Holguin says. His success with the BIRK box and continued progress show that the "therapist in a box" approach can help fill the long-term care gap, providing the ongoing help that leads to further improvement so TBI victims can build a satisfying life after their injury.

She notes that New Mexico has just purchased 525 more kits, a certain number of which will be held for veterans, with the rest being made available for non-military people with TBI. People who want a kit, she says, can contact BIANM to find out where and how they can purchase a BIRK.

A non-profit group called the "10 in 10 Project" accepts donations toward the kits and distributes them to people who cannot afford the $600 price tag. And "Ticket of Hope," a special campaign launched by 10 in 10, is working to secure donations specifically for veterans' kits. After the estimated 3,000 Iraq war veterans with brain injuries receive the help they need, the group will make kits available to others, as well.

Having served a stint in the Air Force earlier in his own life — before the accident, he was working as a law-enforcement officer handling difficult psych-related offenders — Joe Zamora is particularly struck by the statistics on soldiers with TBI. "We have to get people to buy the tickets," he says, referring to the Ticket of Hope campaign.

"These soldiers coming back didn't give their lives in the war. They get to come back home, it's true," he says, "but they gave up their futures. They gave up who they are."

He jokes that although he hasn't dropped his cowboy hat, tears are welling in his eyes again. He takes a breath, then with an earnest smile and nod of the head, adds, "People need to know about this. I have my work cut out for me."

 

For more information on TBI, contact the Brain Injury Association of New Mexico, 292-7414, (888) 292-7415, braininjurynm@msn.com. For more on the 10 in 10 Project, call (877) 989-1010 or see www.10in10project.org.

Donna Clayton Lawder is senior editor of Desert Exposure.

 

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