.- Three years ago, Shane FitzMaurice was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. The rare neurological disorder is typically fatal within five years of diagnosis.
FitzMaurice, 54, is now confined to a wheelchair and breathing machine. His physical deterioration has progressed to the point that he now requires 24-hour assistance to do anything requiring voluntary muscular movement.
He has to be physically lifted to go anywhere, fed because he cannot lift his arms and, if he feels an itch while sleeping, he needs someone to relieve the discomfort. More recently, he has had problems swallowing food.
FitzMaurice’s ALS diagnosis seemingly came out of nowhere, which is indicative of 90 percent of those who contract the disease. No one in his family ever had ALS, nor was there anything in his lifestyle that gave any hint that he would suddenly develop it.
"Five years ago, I was healthy as you -- swimming, diving, playing tennis, skiing and bodysurfing," he said. "I was just the average 'Joe,' and if this can happen to me, it can happen to anyone."
Indeed, he was living a happy, productive life until age 49. He was running Royal Blazers, a successful National City school uniform business that services about half of San Diego County’s Catholic schools; raising four children with his wife, Lilyn Djie; and being an active parishioner of St. Brigid Parish in Pacific Beach.
But one day, while playing tennis, FitzMaurice had difficulty raising his arm to serve. He chalked it up to general athletic soreness, but the situation did not improve, and he noticed that his physical limitations were increasing. He began experiencing muscular cramping and twitching and general decreased limb coordination -- all common initial symptoms of ALS.
Initially, the diagnosis felt like a death sentence. "At first, I was in denial,” FitzMaurice said, “feeling all doom and gloom and ‘why me’?"
But then he decided to fight back. Last August, he traveled with his wife to Monterrey, Mexico, to undergo an experimental procedure that implanted his own body’s stem cells into his brain. While FitzMaurice was pleased that he took action by undergoing the procedure, he admits that it has resulted in only limited improvement.
Still, FitzMaurice believes such therapies should be more freely available in the United States. “People with a terminal diagnosis should be able to sign a waiver with FDA to be guinea pigs, because we do not have the time to wait.”
FitzMaurice added that the while "the absolute worst aspect of ALS is my total dependency on others, the disease has also led me to spend more time with my family and particularly my children, whereas before I was busy running my business.”
“I always wanted to be there for my wife and children, to impart positive energy and thoughts, and to help them build their self-esteem, to keep them on the right path, to stay away from drugs and other common pitfalls of youth. I am trying to stay alive to be with my wife and kids. In the end, I hope they noticed that I was always there for them, that I always want them to try their best and succeed, and that I will love them forever.”
FitzMaurice said his condition has also brought him closer to God and given him a new perspective on going out in public.
"People often do not know how to react to my condition, and frequently will not look me in the eye,” he said. “But I notice that homeless people, and others who know what suffering is like, will always make eye contact, acknowledge me and ask how I am doing."
Contemplating the future, FitzMaurice said, "Life on earth is a test. If you stay close to God, you will get to join Him in heaven."
He said he now thinks more about "crossing over" into the afterlife.
"The transition to the next world is the natural order of things, and we should all prepare ourselves,” he said.
"In a weird way,” he added, “I was lucky that my physical demise was laid out before me, because it has given me more time to spend with my wife and children and focus on my spiritual life."
Printed with permission from the Southern Cross, newspaper for the Diocese of San Diego.