One morning when leaving for work, Steve noticed weakness in his arm. “I couldn’t turn the key all the way to get the truck to start,” he says. After rounds of tests, at only 32 years old, he was diagnosed with ALS.
ALS (amyotrophic laterals sclerosis) is a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord. Once a very active man, Steve is now in a wheelchair, relying on a ventilator to breathe and a feeding tube to eat. “People with ALS often experience a rapid digression from a normal and healthy life to one of total paralysis. Because their brain is still intact they become prisoners of their own body,” said Sandra Sullivan of the United Way-supported ALS Association.
In living with this new reality, one thing hasn’t changed; his relationship with his five year-old son, Lucas. “Steve got a feeding tube recently so [Lucas] had a lot of questions about how that worked and why he needed it,” says Lynn, his girlfriend and caretaker. Though immobile, there is light in Steven’s eyes. His resolve to remain optimistic about his life is strong.
With the help of United Way of Greater St. Louis and the ALS Association, Steven has secured a wheelchair, a customized new living space, and accommodations like ramps and bathroom benches to suit his needs.
“You could easily let yourself get down and depressed. But I think trying to focus on positive things about the disease, [like] I’m still able to work; I’m still able to be a father; I’m still able to go to my son’s baseball games,” he says tearfully.
With a warrior spirit he says, “Eventually I just decided that this was something I didn’t choose. It’s not anything I did to make it happen so I’m just going to keep going, doing what I do. Do the best that I can with what I have.”