BAY RIDGE — Eliseo Ilarraza can’t move or speak, but that isn’t stopping him from moving his life forward.
Ilarraza, who has had symptoms of amyotrophic lateral sclerosis (ALS) for 21 years, has several degrees to his credit, including a Bachelor of Science in human services and a master’s degree in social work. He recently added an MBA from the University of Dayton to his collection of diplomas.
Ilarraza, who lives in Bay Ridge, completed the master’s and MBA after his 2002 ALS diagnosis, by attending classes online. And he’s not done yet. “I intend to keep going and get my Ph.D. in social work,” he said.
All this despite the fact that he is immobilized from the neck down and has to use a computer-generated voice to communicate with the world. He lives in his bed, hooked up to monitors 24 hours a day. A chart on his bedroom wall lists phone numbers of doctors, nurses, family members, and health care aides.
Even voicing his thoughts takes a great deal of effort. He is able to form words by focusing his eyes on letters on a computer keyboard — one letter at a time — and the computer takes it from there, providing sound to his thoughts.
Yet, Ilarraza’s story is not depressing; far from it. His is a tale of patience and perseverance in the face of incredibly long odds. It’s also a story of faith.
“I feel privileged to be alive at this moment and to be living the life of purpose that God has given me,” said Ilarraza, who attended Resurrection Church, a Christian church in Sunset Park before symptoms of ALS started at the age of 34.
Ilarraza‘s academic pursuits have been concentrated on social work for a reason. It is a field he has had an interest in since he was 14 years old. He grew up on the streets of Sunset Park — tough territory in the 1970s and 1980s — and recalled that there was always tension in the air.
“There were gang wars all the time. Someone was needed to intervene. I always wanted to help out,” he explained.
Before ALS (commonly called Lou Gehrig’s Disease) began to show symptoms, Ilarraza’s life was all about movement. He spent many years as a break dancer, performing all over Brooklyn and the Bronx in groups like Dancers Delight and Electric Booty.
But drugs and alcohol were part of his life back then too, he candidly admitted. That ended when he decided to get clean and sober, accepted Jesus Christ as his personal savior, and started attending church services.
He eventually became a counselor in a detox unit at Lutheran Medical Center (now NYU Langone Hospital Brooklyn), where he met Judy Natt, a fellow counselor.
The two became fast friends. Natt visits Ilarraza every day. “He’s such an inspiration to me. He doesn’t let anything stop him,” she said.
When ALS struck, it changed his life forever. When he was diagnosed, “I was very depressed and anxious,” he recalled. “I thought about dying day in and day out.”
He believes that Jesus Christ saved him. “I realized that I am here because I have a purpose. I wish everyone would have a knowledge of Jesus Christ and how He can transform your life,” he said.
He had earned his Bachelor of Science from New York City Technical College in 1999 and, after his ALS diagnosis, he decided to pursue more degrees.
In addition to his studies, Ilarraza enjoys composing music and writing poetry. “I feel it is my God-given gift,” he said. He admires the poetry of William Shakespeare, Emily Dickinson, and Robert Frost and he likes Michael Jackson “for his ability to dance and sing.”
Ilarraza has exhibited remarkable longevity given his disease. Only 5% of ALS patients survive more than 20 years, as he has.
He has made sure his surroundings have touches of joy. A teddy bear hangs on one wall in his bedroom.
“I feel lucky to be alive,” he said.