PAINESVILLE, Ohio - Juan Horta sits in a comfy chair in the living room, his plaid flannel pajama pants pooling over his feet. He stares at the TV screen, but he doesn't seem to be watching the cartoons that are on for his nephews.
The left side of his face looks sadder than the right. The side of his mouth droops into a frown, and his left eyelid is a bit lower. The purple adapter end of a feeding tube rests on his black T-shirt.
A year ago, Horta, 32, a factory and nursery worker, began having headaches. They weren't much at first, but got progressively more severe. Horta's brother, Caesar, took Juan to a clinic, but Juan doesn't have insurance. Eventually, the pain was so bad they went to the emergency room.
Juan was diagnosed with xanthoastrocytoma, an uncommon and aggressive brain tumor. Stage three. A surgeon at University Hospitals removed the tumor, and Juan was sent to a nursing home to recover. Caesar, and his mother, Maria Guillen, visited daily. They noticed what Caesar called "a ball" on the back of Juan's neck, and it was getting bigger by the day. On the fifth day, Juan was unresponsive. The "ball" was filled with cerebrospinal fluid, and Juan needed another surgery to insert a shunt.
A spokesperson for University Hospitals confirmed the hospital spends millions annually on charity care for people who, like Juan, are uninsured. UH also created the Medical Access Clinic to care for patients who are uninsured.
Caesar said it has been difficult to watch his brother go through this. Five months ago, Juan was strong and hard-working.
"It took us by surprise that he needed this brain surgery," he says, sitting on the sofa next to his wife, Amelia, and across from Juan. "Then, to see how he was when he came out of surgery -- unable to speak or walk or eat. Because he has no insurance, he has had no radiation, no chemo."
Juan's family came to the United States from San Pablo, Mexico, and his family is here legally, "working hard and paying taxes," says Veronica Dahlberg, founder and executive director of HOLA, a Latino outreach and advocacy organization headquartered in Painesville. Juan, however, is an undocumented immigrant.
"It's complex, and there is so much hate and political rancor around this issue," she says. "Juan has the proper avenues open to him to get citizenship."
As an undocumented immigrant, he is not qualified for public benefits, including Medicaid. Government programs require proof of legal immigration. Once that proof is supplied, it is still five years before immigrants can apply for assistance.
"Our nursery and agriculture industry depends on workers like Juan," Dahlberg says, sitting on a loveseat in the Horta living room. "It's an $85 million industry in Lake County alone. It is only fair that the workers should be able to get medical treatment when they need it, but that's not always the case, as we see here,'' she said.
According to undocumentedpatients.org, the Emergency Medical Treatment and Active Labor Act (EMTALA) states that "any patient arriving at the Emergency Department of a hospital participating in the Medicaid Program must be given an initial screening, and, if found to be in need of emergency room treatment, or in active labor, must be treated until stable." The law does not require facilities to provide additional treatment, such as radiation or chemotherapy.
Caesar walks over and grabs Juan by the shoulders. He leans him forward in the chair, drapes Juan's right arm over his shoulder, then grabs him under the arms and lifts him to his feet. Caesar tries to get Juan up and moving to keep his blood flowing and to keep him from losing more strength. They head slowly toward a large wooden crucifix, the focal point of the dark living room. Caesar uses his own legs to move Juan's. After three steps, they turn back around, and Caesar stops to hitch up the pajamas that Juan's wasted frame is refusing to hold up. Three more steps, and Caesar lowers Juan back into the chair.
"I don't know, sometimes we have a lot of hope that maybe he could get better, and sometimes we see him and," Caesar pauses, and drops his voice. "sometimes we think maybe not."
Maria comes over and takes Juan's strong hand in hers. She wipes some saliva from the corner of his mouth.
"Siento tanta tristeza." "I am so sad," she says, looking down into her son's dark brown eyes. Juan hears this and begins to cry. Maria comes in close, puts her face on his cheek and he begins to sob, his face a mask of grief. "Cry it out, miho, go ahead, get it out," she tells him as she holds him tightly. He wails like a child in his mother's arms. Caesar wipes Juan's tears, then leans in to hug them both. "Cry, scream, get it out," Caesar says. In no time, the whole family is weeping.
"He is so frustrated," Caesar says, swiping at his own eyes. "He wants to tell his own story. He wants to walk and talk and eat and go back to work."
Juan's co-workers are trying hard to help their friend. They are selling food at work to try to raise money to help meet his medical needs. They want Juan to be able to have nursing services and get physical therapy at home. They want to help pay for the Nutren 2.0, liquid nutrition that is inserted into Juan's feeding tube. A case of 24 one-meal cartons is $43.00 through Amazon, Caesar says. That lasts for four days.
As word of Juan's illness spreads, more people in the close-knit Painesville community step forward. They have donated a hospital bed, a wheelchair and a walker. Others stop by to visit. The choir of St. Mary Catholic Church in Painesville came by to sing and pray.
On Tuesday, nearly 100 people gathered at HOLA headquarters in Painesville. They came to talk about issues important to the community, and to finalize preparations for a fundraiser for Juan.
Dahlberg steps to the front of the room. "Bienvenidos a todos," she says with a smile. "Welcome, everyone!" She tells the group, in Spanish and in English, that she just came from visiting Juan and his family. Everyone listens in silence, then Blanca Mata and Rosario Chavez step to the front to hammer out the details of the upcoming fiesta for Juan. Who will cook the tamales, posole, tostadas, quesadillas and taquitos. Who will bring Mexican chocolate or baked goods. "We also need help for cleanup," Chavez says, her eyes scanning the room. "People will be coming in and out, and we will need people to clean up and handle the trash in between crowds. And we will need cleanup at the end of the night, too."
A young woman offers to make streamers of flowers to hang from the ceiling to add a festive Valentine atmosphere, and a man walks in with an armload of themed baskets for the raffles. Cecilia Mendez stands and asks if it might be possible to start a "Go Fund Me" for Juan. "I think it is admirable that we are together, doing this at a time of so much stress and tension," she says. "If we keep doing good things, in time, we can hope to make a difference. We need to have some courage."
A woman named Nancy, tucked into a corner of the room, agrees. "Do not get carried away thinking all Americans are racist," she says. "As we are seeing here tonight, that is not the case." The crowd, a mixture of colors, looks around the room at one other. A group of students from Hawken School blush and smile.
Mata tells the group to contact her with any more donations for the raffles. "As a community, we want to come together to help them out," she says, hoping to drum up more help. "This time it's for Juan. We have done this for others many times before. And, who knows? Maybe next time..." Her voice trails off, but everyone understands the unspoken words.
The fundraiser will be held Saturday, at the Painesville Knights of Columbus, 987 Mentor Avenue, from 5-10 pm. Admission is free. Tickets for food or raffle are one dollar, or six for five dollars. Dahlberg says that if you prefer to have a festive Valentine Saturday at home, food is available to go. Cash donations can be made through holatoday.org. They are not tax deductible.
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