Sunday Profile: A simple life of stepping beyond obstacles
September 9, 2015
On an August evening in Apple Tree, a collection of photographs lies scattered across the coffee table in the Romero home. Maricela Muñoz, her daughter Soira Ceja and son-in-law Adrian Ceja speak lovingly as they comb through images of Ramon Romero, the family patriarch, from various periods of his life.
"Here is one when he was a boy," Soira Ceja says of a black-and-white photo of children posing with instruments. "He was in a little band with the other kids. Right?" she asks, smiling and looking up at her father.
Romero sits in a wheelchair across the room. His eyes gesture slightly in a sign of confirmation, signaling that her story was correct.
Unable to move or speak, Romero during the recent interview was in the final stage of amyotrophic lateral sclerosis, commonly known as ALS or Lou Gehrig's disease. A rare condition affecting the nervous system, ALS causes the death of motor neurons in the brain that ultimately leads to paralysis in later stages. Additionally, Romero suffered from cerebellar atrophy — degeneration of the cerebellum — a condition that played a role in diminishing his motor function.
Half of all ALS patients do not survive three years after diagnosis; Romero lived with the disease for five. He passed away on the evening of Sept. 1, just days after the interview took place. His wife and children wished to honor his life by sharing his story with the community.
AN EARLY SETBACK
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"He started telling me his story a couple years ago, when he was still able to talk," Soira Ceja recalled. She also translated for her mother, who primarily speaks Spanish.
Born in Agua Caliente, in the Mexican border state of Chihuahua, Romero grew up as one of eight siblings in his family. In 1958, at about 8 months old, Romero's mother, Lolita, took him to the doctor for treatment of bronchitis. Soon after, she noticed that her baby son had strangely lost the ability to move his legs. She rushed him to the doctor again.
"His family — they didn't have a lot of money, so he didn't get vaccinated," Ceja said. "They found out he had polio."
Poliomyelitis is a viral condition that can severely damage the nervous system. The World Health Organization says that the highly infectious disease, eradicated in the United States, primarily strikes young children and causes paralysis in about 0.5 percent of cases. The result of this paralysis frequently leads to lifelong struggles with mobility, muscle weakness and leg deformity.
Romero did not walk until he was 7 years old.
As a young child he relied on the love of his family as he learned to live with his disability. The oldest of his mother's boys, Romero was respected by his younger siblings as the head of the household whenever his father was away working in the United States. At age 7 he received therapy at a clinic in the city of Chihuahua, where he was fitted for the leg braces that would enable him to walk on his own.
Soon Mr. Romero was not only living with his disability, but thriving.
"He was the first student with a disability at the School of Surveying and Drawing in Chihuahua. He graduated at 19 years old with a degree as an engineer topographer," Ceja said, holding a color photograph of Romero with his mother on graduation day in 1977.
LOVE AND MARRIAGE
After receiving his diploma, Romero went on to employ his skills in a job with the government, and later with an oil company called Caasa. At age 24, his life was forever changed when he met his love, Maricela Muñoz.
"He said when he saw her that he was going to marry her. This is their wedding picture," Ceja said, pointing to a photo of the young couple. "She was a beautiful girl from a small ranch, and he fell in love with her. He was always so romantic — telling her she is pretty and bringing her presents."
"Si: flores, chocolates…" Muñoz recalled with a smile. She pulled a stack of love notes from a large folder, all filled with handwritten messages.
"My mom was everything for him — still is," Ceja said.
In 1994, the Romero family came to the Roaring Fork Valley from Mexico. The move brought them closer to relatives already here. The couple wanted a better life for their children, Ceja and her brother, also named Ramon Romero. Muñoz cleaned houses to support the family, but her husband had difficulty finding work due to his disability. He helped his wife whenever possible, and often prepared meals for the family at the end of long work days.
"He also joined the church and became a disciple to teach others about the Bible," Ceja said. "He would hand out fliers and go to the hospital to pray for people."
Looking back on her childhood, Ceja does not remember her father as being disabled.
"He was always doing things everyone else did," she said. "He played with us, taught us how to go fishing. He loved pranking people, and always had a sense of humor. It was just normal for us."
In 2010, as Romero and his wife were enjoying a comfortable life in the mobile home they had purchased and remodeled in Apple Tree, something changed.
"He told us he started feeling dizzy, having vertigo," Ceja recalled. Soon, Romero was diagnosed with cerebellar atrophy. As his condition worsened, his family sought further help from doctors in both Colorado and Mexico. It was not until 2012 that a physician in Grand Junction was officially able to diagnose him with ALS. It is unclear whether his childhood battle with polio had any bearing on his health later in life.
The Romero family watched as he transitioned from crutches to a wheelchair, and from talkative to nonverbal.
Romero was ineligible for assistance programs such as Medicare. Although he was able to get insurance as a result of recent changes in the health care system, he did not qualify for other services due to the fact that he had not been a U.S. citizen for five years. He and his wife became citizens in 2011.
Muñoz works as a full-time housekeeper in Aspen, but is weighted with medical bills.
As the family members supported each other in the winter of Romero's life, their memories of him made clear that he was an inspiration to those around him. Despite facing numerous life-altering diseases and challenges from childhood to late in life, Romero never let circumstances defeat his inner strength.
"He has never complained," Ceja said.
Finding comfort in the faith and memories they hold dear, each family member seemed at peace with what was ahead.
"Right now we are just being together," Ceja said. "We are trying to enjoy every minute we can."
Donations to the family may be given to the Ramon Romero Memorial Fund at Alpine Bank.