A Sacred Journey Chronicles the Impact of ALS on a Lincoln Heights Family
A Sacred Journey, Fernando Barragán 2008, exterior wall, Sacred Heart Elementary
By Abel M. Salas
Ernesto Quintero entered the world a year-and-a-half behind his brother Juan. Of the six children born to Micaela and Roberto Quintero, they were the nearest in age. “Growing up, we did everything together,” says Quintero, an independent filmmaker from Lincoln Heights, the cornerstone East Side community his family has called home since 1966. “We played on the same [Little League] baseball team… Pop Warner football… basketball… we were inseparable.”
There, nestled below Flat Top, Montecito Heights and Elephant Hill—hilltop vantage points the pair of brothers explored as a duo—the Quintero family grew and prospered in the wake of the Chicano Movement and the fervent tide of cultural arts expression it spawned. As a result, the brothers would come of age in an era and an environment that validated their heritage and their identity even as their devoutly Catholic parents strove to ensure all of their brood understood the value of education, integrity and hard work.
“He wasn’t just my brother, he was my best friend,” says Quintero. In 2005, his brother—by then a contractor married to his high school sweetheart and the father of two—was diagnosed with Amyotrophic Lateral Sclerosis (ALS) and given three years to live. Commonly known as “Lou Gerhig’s Disease,” ALS destroys the neuro-motor cells which control voluntary and involuntary muscle function. And it is an illness for which there is no cure. Juan’s family was understandably devastated by the news. Still in shock, Ernesto did the only thing he could. With permission from Juan, his other siblings, his parents and the extended Quintero clan, he turned his camera around 180°, training the lens on them and on himself. If he could do nothing else, Ernesto resolved, he would preserve as many shared moments and memories as possible in the time still left to the brother who had been his closest childhood companion.
Quintero is gracious during a short break in preparations for three screenings of A Sacred Journey: The Transformative Power of Caring, the documentary made from many of those moments and memories, presented over the course of a recent weekend at the Downtown Independent Theater in the Los Angeles. Fourteen years in the making, the film is a profoundly personal testament to the miraculous, life-saving power of love. But it is also “a bigger story about care-giving and the role of care givers in this country,” says Quintero. Organized as benefit fundraisers for East L.A. Rising, formerly Boys & Girls Club of East L.A., the screenings sold out.
“I wanted to make something his kids could remember him by, something we could watch when the family got together,” Quintero continues. He sits at a table in the restaurant and bar that has replaced Le Blanc, an old-school cantina on N. Broadway at Griffin, nursing a glass of water. Word has it that the new spot—favored by East Side Latinx Gen-Yers and millennials—was financed by a settlement won in a lawsuit against Johnny Depp. The irony is unavoidable if you recall What’s Eating Gilbert Grape, the film starring Depp as a beleaguered grocery store clerk and primary caregiver to a brother (Leonardo DiCaprio) with special needs.
“I couldn’t deal with was happening to Juan. I felt like I wasn’t doing enough. It was easier to get high and not feel anything,” he says, alluding to a subject in the film not broached in the half-hour, work-in-progress version of his movie introduced in 2013 at Plaza de la Raza, the renowned Lincoln Heights Chicano cultural arts mecca. “It finally hit me… when I visited him in the hospital… and… as I was about to leave, he asked… if I could… scratch his ear,” Quintero says. The abrupt encounter with his brother’s deteriorating condition intensified his pursuit of sobriety. “I even got down on my knees at one point and prayed to God for the strength to quit using, so I could be there for my brother,” he confesses.
Growing up, Juan had been a model of responsibility, he recounts. Throughout childhood and adolescence, Juan had tempered Ernesto’s rebelliousness with affection and patience. “I was the brother who would sneak out at night and run wild… a troublemaker always looking for approval on the streets from the homies caught up in that life,” Quintero recalls. “He would stay awake until I made it back to our room because he wanted to be sure I was okay.”
Two-and-half years after his brother was diagnosed with ALS, the opportunity to demonstrate his love and appreciation was occasioned by Juan himself, Ernesto offers. A builder by trade, Juan had voiced a wish to leave a legacy or a gift of some kind to his neighborhood while he still had use, albeit limited, of his limbs. Even as he committed to helping his brother realize one last, vital dream, Quintero reveals, he was taking the final steps on a path toward his own recovery. At family meetings held to discuss Juan’s immediate health concerns, the Quinteros welcomed Juan’s desire to contribute in a substantial manner with enthusiasm.
That impulse to leave a permanent endowment behind—rooted in generosity and the quiet, unassuming spirit of nobility which had earned the Quinteros widespread admiration and respect—became the genesis of a mural project at Sacred Heart Elementary, where Juan’s daughter and son were enrolled. “It was his way of giving something back,” Quintero says. Enlisting artist Fernando Barragán, the “Picasso of Lincoln Heights” and long-time family friend, to transform ideas and images developed with input from Sacred Heart faculty as well as community residents into a cohesive visual narrative, Ernesto and Juan were once again united as part of a team.
A Sacred Journey, the public art installation coordinated by the ad hoc three-man mural squad—a Lincoln Heights home team if ever there was one—and commissioned by Juan Quintero, went up in 2008 on an exterior wall at the primary school. The mural depicts area history from before the dawn of mankind to the ancestral Tongva village of Yangna, and from early Sonora Town settlement preceding the establishment of Sacred Heart Catholic Church in 1890 to the centennial commemorated by parishioners in 1990. Rendered in the vivid hues and bold lines imbued with passionate humanity—hallmarks of the figurative expressionism Barrágan is renowned for—the mural remains as a glittering reminder of “muralismo angelino” at its best.
The mural project provided a focal point for an assemblage of memories and stories intended to serve as a family keepsake and an elegy to friendship and brotherhood, Quintero continues. To that end, he began splicing footage from before and after learning his brother had ALS, with family photos, and clips from old home movies on Super 8mm. In 2012, he was hired as part of production team tasked with documenting the first-ever Jennifer Lopez world tour as a musical artist. After traveling to 40 cities in four months, he returned to Lincoln Heights. (Photo: Juan Martin, left, lends artist Fernando Barragán a hand on the mural project. Courtesy of Highter Ground Entertainment)
“I was exhausted. It was a great gig, but it wasn’t really me. I was just glad to be home,” Quintero says. “I realized how much I’d missed my brother Juan, and I started looking through what I’d already edited. I knew right away that it was what I’d needed to get back to all along.” Yvonne Jimenez, a colleague with whom he shared that preliminary edit, insisted he had the makings of a feature-length documentary, one which she would gladly help develop as a co-producer.
The 2013 Plaza de la Raza event held not long after was highlighted by a standing-room only screening of the half-hour rough-cut and the presence of Juan Quintero, who had defied the medical prognosis delivered by physicians eight years before. The venue, established at Lincoln Park over half a century ago, was the ideal setting for a public celebration of the mural from which the film takes its title and an appeal for financial support to complete production. A Sacred Journey, Quintero explains, more than simply an inspirational reprisal of the love and faith with which his family faced the tragic reality of ALS, is also the centerpiece of a campaign to honor the 66 million people currently working as caregivers in the U.S.
Only 5% of all patients, according to Quintero, continue living with the aid of a ventilator. Juan, he proudly reports, is one of them. Confined to a wheel chair, his brother’s respiratory system is regulated by a ventilator device which pumps oxygenated air into his lungs since his diaphragm, the muscle that makes breathing automatic, is inert. Although he is completely paralyzed and dependent on 24-hour care, he is alert and engaged. He communicates with a wireless keyboard that senses the exact focus of his eyes to select a keystroke, allowing him to type. “There are very few people trained to provide care for ALS patients,” Quintero explains. “It’s a very specialized field. My mom sold her flower shop on Mission to pay for nursing school, so she could be qualified take care of him.
There are close to 5000 new cases of ALS diagnosed annually, notes Quintero, and approximately 60,000 U.S. residents with ALS at any given moment. Paraphrasing former first Lady Rosalynn Carter, all of us fall into one of four categories, he says. “You have either been a caregiver, are a caregiver, will be a caregiver, or someone who needs to be cared for.” He would like the film to be a catalyst for the creation of a Latino ALS registry and highlight the urgent need for adequate nursing care focused on ALS patients. He also hopes it will raise awareness about the important role of caregivers in our society and pave the way for policy changes that improve the quality of life for caregivers themselves and provide them with the resources to live happy, healthy lives.
On August 9th, A Sacred Journey: The Transformative Power of Caring will be screened on opening night as an official selection at the annual Compassionate Film Festival in Carbondale, Colorado. Locally, the film will be shown for students and alumni at Cathedral High, alma mater for both Juan and Ernesto. Although he’s submitted the film to several festivals for consideration, he is equally interested in exploring synergistic collaborations with educational, community and humanitarian organizations that make health and care-giving central to their mission and programming priorities.
“We have several networks reviewing the film as we speak. In November, we’ll head to Philadelphia for the American Public Health Association annual conference,” Quintero adds. “And there are talks about taking it to NCLR and LULAC as well as interest from AARP. But for me, just the fact that we were able to finish making the film and that my brother is still with usbecause he chooses to be mean more to me than any of that stuff.”
For more information, visit https://asacredjourneyfilm.com and to book a screening, call 323-286-2011.
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