Oklahoma man battling rare disease inspires others
For many families, COVID-19 has changed the way we celebrate Thanksgiving this year. Still, a young father of four in Elgin, Oklahoma shows others that gratitude can exist even in the face of adversity.
Tyler Fikes is not one in a million, but he is one in about 100,000 people each year who develop a rare condition known as Guillain Barre Syndrome, a disorder in which the body’s own immune system attacks its nerves. The cause of GBS is not clear, but it is preceded by a viral infection in some people. Fikes recalls he had just gotten over a cold when he first noticed symptoms.
“It was Thursday about noon. I’d been working at my computer. It had kind of the same sensation as if your arm or something went to sleep and it was waking up, that little pins and needles feeling. I thought well maybe I’m holding my hands against the side of the desk or something and I didn’t really give it much thought,” he said.
Within days, though, he was in the hospital, paralyzed from the neck down.
“So, from Thursday at noon to early Monday morning, that’s how long it took. I went from being able to do whatever I want to literally not being able to scratch my own nose,” Fikes remarked.
Doctors prepared Fikes and his wife Savannah for the worst. The disease was progressing fast and there was a very real possibility that Fikes would lose the ability to breathe without the help of a ventilator. Still, Fikes did not lose his faith or his determination.
“You do what you do. This is the hand that I was dealt, and God said, ‘Do it.’ and we said, ‘Okay.’ I had a lot of prayers. I actually had people praying for me from the Philippines, India, you know all over the world. By the next morning, they said, ‘it looks like it has stopped progressing. It should be all recovery from here. And here we are two years later still recovering,” he said with a smile.
That was two years ago. Today, at Valir Physical Therapy in Elgin, Fikes continues to do the hard work of recovery. Physical therapist Stephani Chambers has been at his side month after month, witnessing firsthand his true grit in action.
“He doesn’t have that give up factor. He’s like, ‘No, let’s try it again even when he is purely exhausted,” Chambers said. “He would always be like, ‘No, let’s give it one more, come on we can try it again.’ I’m like, ‘OK, let’s try it again.’ You could throw a lot at him and he’s going to give it every ounce of effort he’s got. He’s going to give it everything plus some.”
Steadily, Fikes made progress. He experienced wins. First, getting out of the wheelchair, then the ability to dress and feed himself. The road to recovery was not without setbacks, but those never phased Fikes. For him, it was just part of the process.
“You’re working, you’re making progress, leaps and bounds and then it just stops for a while; and then all of the sudden, it’s like, I haven’t tried that in a while. And you try it, and it just works. It’s like, hey, that’s motivation to get to the next plateau,” he explained. Chambers says Fikes has always had the right combination of commitment and belief.
“I always tell patients therapy is 50 percent what you put into it and 50 percent what you believe about it. He’s got both components. He’s got the mind component and the effort component. So, his process is 100 percent his to gain,” she said.
Fikes has definitely seen gains over the past two years at Valir. He regained not only the ability to walk, but the ability to drive again too. He struggles still to regain full use of his hand; but when his fourth child was born, he cut the cord himself – another meaningful victory for Fikes. His newest goal is to regain the ability to pick up his children.
“Right now, I can kind of cradle them in my arms and use my shoulders and my core to kind of pick them up, but being able to pick them up with my hands and do stuff would be really nice. But we work around what we got,” he said.
Fikes’s never-say-never attitude is inspiring to all who know and meet him.
“To see the different milestones he’s hit each time is really rewarding. We’ve all cried with him when he’s cried and Savannah’s cried, and we all have those happy tears when we hit those other milestones,” Chambers said. Through it all, both the ups and the downs, Fikes and his wife Savannah stay rooted in faith, always looking to the future with optimism. Although it is not the path he would have chosen to take over the past two years, Fikes believes there is always light even in dark times. He explained that were it not for the tests done when he developed GBS, a nodule on his thyroid might have been missed.
“You know, if I hadn’t had this, I would be walking around with potentially deadly cancer and I wouldn’t know it. So, you know, it’s all going to work out and my job is to just keep working,” he said.
And in a year that has pulled the rug out from under many people everywhere due to COVID-19, Fikes shared this perspective:
“You with deal with what life gives you. You keep on going and the sun comes up in the east and sets in the west. That’s what you do.”