In November 2015, Luis Gauchun and Karina Valdez were an ordinary young couple, working toward a better life. In their Facebook photos he is handsome and full of youthful, masculine energy; she is gorgeous with long dark hair and a trim, petite figure. They were newly engaged and had their whole lives in front of them. Their favorite thing was to go out dancing.
Karina first made her way to the Twin Cities from Mexico City as an au pair, and then eventually landed a student visa so that she could study early childhood education. She will graduate from college in a year, and hopes to get work as a preschool teacher.
Luis arrived in Minneapolis about 10 years ago from Cuenca, Ecuador, joining family who had already immigrated to the area. He quickly found work, first at Target, then falling into the restaurant industry, as many Ecuadorian immigrants in our cities do. The Ecuadorian and Mexican communities are the silent backbone of our dining scene.
“[Immigrant labor] is what restaurants are based on, and people don’t realize it,” says Patrick Atanalian of Sanctuary restaurant in Minneapolis. He helped get Luis hired at Sapor around 2007. “They come, and say my uncle, my nephew, my cousin needs a job. And then you train them and they become chefs. The work ethic is totally different.”
Luis worked in a number of local kitchens including Mill City Cafe, Lush, and the now closed Sapor, and most recently with a multinational foodservice company called Compass Group that services factories, schools, hospitals, and sports venues.
But only a month after he and Karina were engaged, Luis started feeling strange. His right hand and arm felt weak, and he was having trouble with everyday activities like taking the cap off of a water bottle. The muscles in his hand seemed atrophied. He made a medical appointment, and after running some tests, the doctor returned with devastating news.
Karina laughs nervously when telling the tale, as though she still has a difficult time believing it. “This doctor says, I think you have ALS, and if that’s the case, you will live two to five years.”
When she returned home from school that day, she asked Luis how the appointment had gone.
“He said, ‘I don’t even know if I want to tell you.’ And he was holding his tears, and then I started holding mine.”
They went for a second and then a third opinion, but the awful news was the same. Luis had Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease after the baseball great who was afflicted with the illness. The prognosis was that Luis had two to five years to live.
“I hadn’t even heard of ALS except for the ice bucket challenge,” Karina remembers.
Few of us know more than that. ALS is a degenerative disease of the nervous system, weakening muscles and impacting physical function, eventually spreading to all of the body’s muscles including those that control speech, swallowing, and breathing. The disease is rare, affecting fewer than 20,000 people in the United States at any one time, and its onset is most often a mystery, striking patients with no clear identifying cause. Luis is only 30 years old.
The two were married six months after his diagnosis.
“Some people said, ‘Are you crazy? Why don’t you leave him?’” says Karina. “But we wanted to show how much we love each other.” They did it quickly, in a simple ceremony at the courthouse, with only Luis’ father and the officiating judge in attendance.
“I just got a regular dress from the store,” says Karina. “He didn’t want a lot of people there because he said, ‘How will I hold hands? How will I hug?’”
When I get Luis on the phone, he is heart-wrenchingly gracious and upbeat, laughing throughout much of our interview, though it’s easy to hear the fatigue in his voice. He had to quit his job as a cook in November, because it was becoming too dangerous. He kept falling.
Since then the weakness in his hands has increased, and taking the stairs has become an impossibility. The couple had to move to an apartment with an elevator. Though he can still walk with a walker, it’s difficult, and he feels humiliated if people stare at him, so he chooses to stay home most of the time.
“I used to be able to run,” he tells me. “And now I have to rely on my wife for so much.”
Meanwhile, because she is currently in the U.S. on a student visa, Karina is not allowed to work. She takes babysitting jobs when she can, but none of her work can be contractual or documented. She also has to remain in school full-time, or her visa can be revoked.
Luis was the sole provider for their household. Now their only source of income is from Karina’s retired parents, who still live in Mexico City. It’s a hardship for the family, especially since the peso is currently valued at roughly half of a U.S. dollar.
Complicating matters further is the fact that, without a green card, Luis does not qualify for disability assistance.
While some non-citizens may meet all the eligibility criteria for receiving Social Security benefits, many, like Luis, do not. Because some non-citizen students and other workers are exempt from paying Social Security taxes, they are also disqualified from receiving disability benefits, as they do not meet the basic technical criteria to be eligible for Social Security.
Luis is in the application process for a green card. Stressing his dire medical status, he requested the process be expedited, but it was denied. It could take three to six months, maybe longer, for the residency approval to arrive. If it arrives at all.
“Of course, there is no guarantee,” says Karina. “None at all.”
They say they are also “definitely” concerned about how the incoming administration is going to handle cases like theirs. In the meantime, it is unclear how quickly Luis’ health will deteriorate. But it will deteriorate.
“My disease is progressing,” he assures me. And while he tries to stay positive, it’s difficult. “I see the tears in my mother’s eyes, and in my wife’s eyes.”
As things stand, Karina needs to turn on the faucet for him to take a shower, as he doesn’t have enough strength in his hands for the motion, and to help him dress and undress. He requires a special tool to lift a fork to his mouth. She worries about him falling when she’s at school.
Karina and Luis do have some help from friends and family, but they also have their own lives. Luckily, the couple can get certain equipment on loan from the local ALS Association, such as walkers and wheelchairs, “because they know that eventually you won’t need it anymore,” Karina explains in a small voice.
Luis and Karina don’t like to talk about the facts of the disease much. But they do want to fight it.
Experimental treatments are expensive and many require travel, a near-impossibility for Luis at this point. They tried a holistic doctor that cost them thousands in worthless visits and treatments. Luckily, Luis does receive health insurance from Compass Group, but like most health insurance, it doesn’t cover everything. Not by a long shot.
Luis is currently prescribed Riluzole, an expensive drug (about $10 per tablet) that Luis must take twice daily to hopefully increase his life expectancy by about three months. But the drug can have serious side effects, including liver damage. The doctor visits required to monitor his progress on the medication end up costing them between $500 and $1,000 out of pocket for each visit, so Luis has decided to stop going.
He’s in pain much of the time with severe cramps and muscle spasms. He doesn’t talk about it much, but Karina says she can see it in his face.
Nothing helps with the pain, but medical marijuana helps him sleep. He has a prescription, but that’s fully out-of-pocket too. The supplements required to boost his brain and joint function are hundreds of dollars per month.
Luis’ work disability benefit doesn’t kick in until he has been unable to work for at least six months, several months from now. And even when it does arrive, they’ve estimated that he’ll only receive about $1,000 monthly.
Like too many people in the U.S., Luis and Karina have turned to Go Fund Me as a dubious safety net for their situation. To date, they’ve raised about $3,500. If you wish to donate, you can do so at gofundme.com/helpLuisfightALS.