New America Media, First Person, Lourdes Sevilla as told to Viji Sundaram
My brother, Jesus Eduardo Sevilla, was 56 when he died last year in Fresno, Calif., after battling a degenerative neurological disorder for four years. He was uninsured because of his undocumented status.
Jesus was a father of five, a grandfather of nine and my baby brother. He embraced life. He made everyone laugh, including the doctors and nurses who cared for him at the Fresno Medical Center. They were moved by his attitude, his personality and his compassion. At his funeral, I learned so much from each grandchild about all the things he meant to them.
I am happy to share my pain and frustration over trying to get good health care for my brother.
Jesus came to the United States in 2010 to join his wife who had crossed the border illegally a year earlier to be with their children. He too came without papers. His plan was to return to his homeland after a few months, although his wife wanted to stay here.
Back in Mexico, for almost 15 years, Jesus had helped his brother run his pest control business. Back then, he was strong and healthy and had never felt the need to see a doctor. He loved playing soccer.
In 2012, nearly two years after he came here, we noticed him walking with a limp. His speech slurred and his hands began to shake like someone with Parkinson’s disease. Soon, he couldn’t hold down a job because of his health. We thought at first that he might have had a small stroke. Doctors at the ER in the Fresno Medical Center diagnosed him with diabetes, although his symptoms suggested otherwise.
The next several months were one hospital visit after another. Family members dipped into their savings and paid for lab tests and visits. It was a lot of money. One doctor said he needed an MRI and blood work that cost close to $2,000.
In May 2014, Jesus’ condition worsened and we took him back to Fresno Medical Center, where he stayed for a whole month. He was confused and traumatized. He couldn’t communicate because he barely spoke English. I couldn’t be with him all the time to translate. While he was in hospital, someone told us about the Medically Indigent Services Program, a program for low-income Fresno County residents. We enrolled him in it.
Finally, doctors diagnosed him with MSA (Multiple System Atrophy), a rare degenerative neurological condition. Doctors said it might have been caused by environmental toxins. More than once I had told them that he used to work in a pest control business in Mexico, but they didn’t treat that information as important.
I watched sadly as Jesus became progressively worse. I wanted him to be seen by a neurologist but found out that he would have to wait for 11 months for that to happen. It broke my heart because I couldn’t do anything. But I must say that in the last few months at least some basic care was there for him. We were grateful that a social worker and a nurse came home once a week to check him up.
He died Feb. 28, 2015.
Undocumented people have such a high price to pay. The question always on my mind is: Could I have done more for my brother? I loved him so much. Had he had doctors and specialists to care for him soon after he was diagnosed, maybe the disease could have been managed. In my heart I feel he could have stayed with us longer if he had insurance.
I am very thankful for the people who helped him. But I am resentful about how the system works. We all should have good coverage. Health care is a basic human right.