TREY'S HOUSE SEEKS OWN RECOVERY
In 2000, Jose Guillen, Jr. decided that his father had hit him for the last time. Since the age of 7, the Uvalde-born Guillen — one of nine children — worked alongside his family as a migrant laborer, despite the loss of about 90 percent of his vision to a childhood brain tumor that also robbed him of an ability to read or write. He picked green beans, onions, and sugar beets alongside his abusive father in Appleton, Minn., each year. Minor infractions, like not mowing the lawn or cleaning the garage properly, could be met with a belt to the face.
In high school, he was pulled out of class with a black eye and bloody nose and handed over to Child Protective Services, which then returned him to his family after briefly considering placing him in a home for the developmentally disabled. “They touched my stomach and said, 'You look healthy!” said the stout and relatively cheerful Guillen in a recent phone interview. His father, however, demanded to know why he had been in touch with CPS before beating him again, he said.
Guillen said his traumatic brain injury, or TBI for short — in his case, tumor-inspired brain damage and consequent loss of function — made him an outcast in his family and required daily growth hormone shots to counter the effect of childhood radiation therapy that had damaged his thyroid and stunted his growth. Being both blind and having prohibitively expensive medical needs burdened the entire family and drew his father's ire.
In 2000, Guillen left his parents' San Antonio home to begin a new life. He was done giving his father his paychecks only to be banished to a casita behind the house, living under the ominous threat of verbal and physical debasement. His new life would be fraught with no fewer challenges, but he would at least find a purpose that compensated for the chaotic years of his youth.
As a civilian, Guillen found that assistance for TBI — considered perhaps the signature wound of the wars in Iraq and Afghanistan — difficult to locate. The bulk of local support is found at the South Texas Veterans Health Care System, a polytrauma center serving approximately 100,000 service members a year. Because he is not a veteran, Guillen sought help instead at a local Unicorn Center on a caseworker's recommendation, but was discouraged by what he deemed a lack of compassion and real assistance (Unicorn serves the developmentally disabled, not TBI survivors). “They tell you to shut up, be quiet, color, and do math,” he said.
His life changed for the better when he met Trey Griffith in 2007. Griffith, like Guillen, is a civilian TBI survivor, having endured brain tumors and several craniotomies that hindered his speech, communication, and short-term memory functions. In 2002, doctors told Trey's mother, Margaret “Maggie” Griffith, that her son would likely require adult day care service for life. But by 2007, Trey had regained most of his cognitive and speech functions simply by visiting with friends, playing music and games, and generally trying to feel “normal” again, she said. The no-nonsense and fundamentally cheap therapy engineered by his mother and friends (it can be given to someone who has been denied disability and/or Medicaid benefits) became the model for Trey's House, which opened in 2008 with Griffith as director. Trey's is a TBI-focused nonprofit whose mission is to improve the life of anyone who has endured or sustained a TBI. It offers services not unlike a community or youth activity center — board games, live music (particularly in the form of open jam sessions), “anything goes” art nights, potluck dinners, and drum circles: all intended to re-introduce TBI survivors to being social. “Sometimes, seeing that we're not alone is the best therapy for the head and heart,” states the group's website.
Guillen summarized Trey's seemingly freewheeling approach in a single word: “freedom.” The facility offers a welcome respite to TBI sufferers, whose lives are often marked by failed rehabilitation programs, PTSD, alcoholism, joblessness, homelessness, and poverty. “It's just a place where you can hang out,” Guillen said. “You get to go pour yourself a cup of coffee, get a soda or different snacks, and play air hockey or use the pool table or watch TV.”
In addition to socializing with other TBI survivors and volunteers, Guillen found opportunity to network. In 2010, Griffith introduced her members to a representative from ADAPT, a national disability-rights organization that advocates for the special-needs community. The sometimes pugnacious Guillen decided to become an advocate and moved to Austin to be near their local chapter.
Recent research — perhaps best popularized by the book The Brain That Changes Itself — is showing that the brain is incredibly adaptable. According to Brainline.org, missing or damaged brain tissue (say, a part responsible for understanding the guitar) can rebuild itself through a process called neurogenesis. And other regions of the brain can learn skills lost through damage in other quarters. And while the clubhouse approach intended to foster such rehabilitation is not new, its implementation seems to be lagging behind the immense need created by the wars in Iraq and Afghanistan.
Even Trey's House — which currently serves around 20 people, including five veterans — is teetering on the abyss. As recently as 2010, about 50 sought solace here. It's been a challenge since day one. Opening inside Griffith's home before moving to a building off Blanco just south of Chris Madrid's, the operation has occupied no less than six properties in its four years of operation (one being the now-closing G.I.G. On the Strip on North St. Mary's). Staff members have been almost exclusively volunteer, partly because Trey's has never had much money, partly because Griffith only trusts long-term acquaintances or people directly and indirectly affected by TBI. She has turned down professionals promising to make Trey's a million-dollar operation for fear it would lose its “humane” focus, she said.
Last year, Trey's also lost two of its largest funders: The Center for Health Care Services and the Civil Justice Foundation. The former cut 18 percent of its budget and the latter passed Trey's over for other grantees, citing a larger pool and fewer grants to award. After the loss of revenue, Griffith decided not to renew the group's 501©(3) status for 2012. Things seemed to be concluding for what the Brain Injury Association of Texas confirmed is San Antonio's only TBI-centered clubhouse.
Aside from the odd Stone Soup event and/or rummage sale, Trey's today is powered by little more than a donation cup present at every event. Since moving back to Griffith's home in October, Trey's has also been based at St. Mark's Episcopal Church downtown and at various members' houses. Yet the need for such programs is very real. “Every four minutes someone will have a brain injury in Texas that is not related to the military,” Griffith said, citing a CDC statistic.
The Center for Disease Control and Prevention estimates 1.7 million Americans sustain TBIs annually. The causes are myriad: from brain tumors to car accidents to steep falls to improvised explosive device blasts overseas. The Center of Excellence for Medical Multimedia writes that TBI may be the “signature wound” of modern military conflict.
Michael Mason, author of Head Cases: Stories of Brain Injury and Its Aftermath, calls the problem of TBI “truly a health care crisis,” one that may not dwarf post-traumatic stress disorder in occurrence but that blows PTSD away in the sheer costs of rehabilitation. The Family Caregiver Alliance estimates the lifetime cost of rehabilitating someone who survives a severe TBI can reach $4 million. Mason is skeptical of describing a clubhouse like Trey's as “therapy,” however. He describes the wide variety of clinicians — including speech language pathologists, occupational therapists, recreational therapists, neurologists, neuropsychologists, behavioral therapists, psychiatrists and internal medicine doctors — that are required for recovery. TBI follows a disease process that heralds a lifetime of struggle requiring lifestyle changes akin to diabetics altering their eating and exercise regimens.
Mason said that TBI remains a vastly underfunded yet growing medical problem. Signature nonprofits such as Susan G. Komen simply do not exist for TBI. The American Heart Association — with needs roughly comparable to those of the nation's brain injury victims — receives hundreds of millions of dollars of aid annually, while the Brain Injury Association of America had a total revenue of only $1,892,198 in 2010. “It's a very serious legislative problem,” Mason said. “I don't know that brain injury is being adequately funded in any state in America right now.”
Because of dramatic changes to speech, character, and work performance — and the fact that TBI has only recently begun to be better understood by the scientific community — it's perhaps unsurprising that TBI survivors often find themselves ostracized by family and friends. “If the brain is its own universe, then we've only just landed on the moon,” said Mason. “There is still a tremendous amount of research that must be done on the brain and how it heals.” Trey's approach, he says, offers “a more serious, more organized version of the support group.” It is, in effect, “a supplement” to therapy, but not a replacement for it.
Though TBI survivors have access to Department of Assistive and Rehabilitative Services benefits (for the purpose of recovery in accident and emergency room rehab), few options remain outside of general support groups, said George Yesian, president of the Brain Injury Association of Texas, before adding that Trey's House is the only TBI clubhouse available in San Antonio and likely the only one in Texas. Simply put, challenges to the effectiveness of its approach aside, beyond Trey's, there are just not many accessible options for TBI survivors locally. And that makes Trey's struggle all the more difficult to watch.
“One of the biggest problems is that I'm not a fundraiser and I'm not an organizer,” Griffith confessed recently. “[But] the biggest barrier all along is — and this is why we've always had to struggle — is because we've never been medical. We're not testing people and we can't provide quantitative proof that what we're doing is necessary. The funders out there want to see readable results. And how can the result be 'It's a very inexpensive way to provide a good life for someone with a disability'? It's real hard to put that on paper.”
Hard, but not impossible. Don Griesmann, founder of the Charles “Poppy” Sharp Neighborhood Community Center and a New York-based online nonprofit fundraising consultant with four decades of nonprofit experience, has mixed feelings about Griffith's assessment. He believes that Griffith suffers from what he calls “founder's syndrome,” which describes not knowing what one does not know about running a nonprofit. He points to Griffith's distrust of professionals, her belief that Trey's can run on as little as $30,000 a year, and the idea that clubhouse work is too abstract to quantify for potential funders. “She needs help assessing what is working and what is not, from jamming, games, art, and other activities,” he said. “There are measurable goals and objectives.”
Despite its many management fumbles, Trey's clubhouse approach is member-approved. Though Guillen's life remains unglamorous — he regularly changes jobs because he says he is passed over for promotions on account of his blindness; the bulk of his income comes from Social Security, disability, and food stamps (about $760 monthly) — he's grown in confidence and courage because of his time at Trey's.
On April 23, he was arrested in Washington, D.C., for protesting federal cuts to Medicaid with about 100 members of ADAPT, many of whom were protesting in wheelchairs. Guillen says he was cuffed in wrist ties, taken to booking, fingerprinted, photographed, and then released. It's something he would not have had the strength to endure if not for his time at Trey's. “The support, it turned me around,” he said. “I used to be afraid of things — of people — because of my father. I didn't have anybody to show me the ropes. When I had problems, Margaret was there to help me.”
And yet, there are positive signs that Trey's may be reforming at last. Griffith stepped down as director last month and Trey Ibarra, a 25-year-old UIW psychology grad, was named her replacement. Ibarra (members call him “T2”) has interned with Trey's through the years and paid for his education using only Pell Grants and scholarship money, leading Griffith to believe that, “He's got the resources to find money where there is some.”
Ibarra spoke to the Current of what he called “the miracle of Trey's House.” As an intern, he said he watched more fearful members who often mumbled to themselves instead of talking with other members of the group gain the wherewithal to not only start holding conversations but even get behind the mic during the jam sessions. If Griffith understands the miracle, Ibarra believes he has the skills to grow Trey's non-exploitatively. “Our regimen of social activities helped these people grow their vocabulary, motor-function skills, and a sense of self,” he said. “We're here to help. We're not here to make money off people with TBI.”
Meanwhile Griffith, recently diagnosed with rheumatoid arthritis, said while she's passing the torch, she isn't leaving Trey's House. The cause is too important to her. She hopes to re-open in a public location in the fall, and hopes the new director can both raise the profile of TBI in San Antonio as well as put Trey's on a firmer foundation. “I'm not old, but I sure feel it,” she said. “I'm going to be focusing on the advocacy work that we do. [I'm just] the jeans and T-shirt person that wants to make a paper-mache giraffe. I don't like the limelight. I never have.”
So what will her new title be?
“I don't know,” she said, chuckling. “Mom?”