College student teaches the meaning of drive, determination, and never giving up despite ALS
By Alicia Jacobs, Excelsior Life Staff --
Ron Miller is not your ordinary student. In fact, very little about him is ordinary. He is a very unique individual who, literally, has his eyes on the goal of earning an associate degree. His story illustrates the depths of human determination and the importance of never giving up, despite the odds.
At 45, Miller is like other Excelsior students who want to finish the education they started some time ago. But unlike his classmates who are balancing life’s demands while pursuing their degrees, Miller is balancing life itself. He has ALS, a neuromuscular disease, often referred to as Lou Gehrig’s disease. ALS destroys nerves that control muscles and progressively leaves those with it unable to move, speak, eat, and breathe. While the body loses function, the mind doesn’t. There isn’t a cure and most people with ALS usually pass on within two to five years of being diagnosed. Miller has beaten the odds. It’s been 14 years since he was diagnosed.
Miller has a drive and positive attitude most of us can only imagine. He says his determination comes from his competitive nature to always push himself to be the best he can. He remembers when he was first diagnosed and the neurologist advised him to return home to get his affairs in order because he had, at most, two years to live. That didn’t sit well with Miller. He fully intended to prove the doctor wrong.
“I have been fortunate enough to be one of five percent of people who have lived beyond ten years and I don’t want to squander such a gift. Making a difference is important to me and worth the battle,” Miller said philosophically. Completely paralyzed from the nose down, he uses eye-gaze computer technology to take classes and communicate with his family, friends, and nurses who provide his care. “I can do almost anything with only my eyes,” he adds. The eye-gaze computer Miller uses tracks eye movements with an on-screen keyboard that “clicks” based on the amount of time he spends looking at an intended target.
Despite his ability to make the most from his situation, adjusting to living with ALS can be a long process, just like the disease. In Miller’s case, every physical loss became a reason to find a different way to accomplish a task. He was 31 when his symptoms began, 33 at diagnosis, and is not ready to give in to the disease.
Miller craved something more from life and decided to enroll at Excelsior College to finish the education he started years ago. Living in a long-term, acute-care hospital the only activity he got regularly was from the TV and the Internet. Miller decided that finishing his education would give him the skills to be a better advocate for ALS awareness.
Since his diagnosis, the advances in technology changed considerably and the possibility of a new career was not out of the question. His eye-gaze controlled computer he uses for school challenges Miller’s mind and computer abilities. He enrolled in the Liberal Arts program at Excelsior not knowing if he would be able to complete an associate degree. He is now thinking a bachelor’s degree is a possibility and his excitement is evident.
“Christine Earley-Nadler, the disability services coordinator and Valerie Di Cioccio from the Financial Aid office at Excelsior have both been a great help in getting me in a position to accomplish my personal goals,” he says. “Watching my GPA continue to climb closer to a 4.0 has been very empowering. If fourteen years ago someone had told me that I would be taking Physics and Pre-Calculus, I would have told them they were crazy. Now, the sky is the limit."
One of Miller’s most enjoyable classes was music history. He was in band throughout middle school and high school. The course revived his interest in classical music and he has been able to find something enjoyable, challenging, and enlightening in all his classes.
For someone dealing with adversity, Miller found out early on that embracing technology would make his life much easier and he has learned how to adjust to things beyond his control. Instead of seeing a wheelchair as a failure, he saw it as a tool to make his life easier. He knew he may not be able to change the disease process, but he can control how he reacts to it. The use of technology also equated to better mobility, quality of life, and ability to interact.
Social media has dramatically affected his world, too. “When I was diagnosed the support groups were very limited. Now I am able to share my experiences with hundreds if not thousands of people going through the same battle. Instead of dying from ALS, I am living with it,” he notes. “I have been through many losses in the last 14 years, but I am still grateful for the life I now have. I may have ALS, but ALS does not have me.”