Steve Mikita, a man who has spent his life spinning adversity into advantage, has found yet another reason to celebrate as he enters his 67th year.
He can now turn his head from side to side.
It’s not much of a turn, almost undetectable, but fractions of inches make a huge difference for someone who hasn’t been able to do this since he was in his 40s.
“I’m able to hold my head and turn from right to left for the first time in 20 years,” says a beaming Mikita. “My tongue doesn’t fall back in my mouth and I can now be more articulate and enunciate words that were increasingly more challenging. I’m able to swallow better, the pain I was experiencing in my neck and shoulders has vanished, I have greater stamina.”
All this is due to a new prescription drug, Evrysdi, Steve began taking last December.
“I never thought I would ever live long enough to be able to actually take a drug that would help offset or delay the progression (of my disease),” he says. “It’s just miraculous.”
Mikita was born with spinal muscular atrophy, a genetic neurological disease that causes muscles to waste away over time. Rare to begin with — about 1 in 10,000 babies are affected — the club swiftly gets smaller. Seventy percent do not make it to their second birthday. When Steve was diagnosed at 18 months his parents, William and Mildred, were told he had six months to live.
“I think I’ve been bragging about my age ever since,” quips Steve, who, at the age of 66, has the luxury of reflecting back on a life that, despite being in tandem with a steady progression from mobility to immobility, includes a bachelor’s degree from Duke, a law degree from BYU, a 39-year career as an assistant attorney general for the state of Utah (from which he retired a year ago) and a lifetime of service and advocacy for the disabled.
And that’s just so far.
“I’m retired but I’ve never been busier,” says Mikita, who in his “golden years” is serving as a patient advocate on no less than 10 national health committees.
The new miracle drug he’s taking, “has given him the impetus to reach out and do even more for people with disabilities than he was able to do with the AG’s office,” says Mikita’s sister, Carole Mikita, the longtime KSL-TV journalist.
She adds, “His will to live and do something positive with his life is something I’ve never experienced anywhere else” — and this from a woman whose career hallmark is reporting inspirational, faith-promoting, adversity-overcoming stories.
“I’m not sure where the drive comes from, but part of it is just his personality and part of it is from our parents and the encouragement they constantly gave. From the beginning, Steve knew his life wouldn’t be easy; they let him know, and they let him know that was OK.”
* * *
At Mikita’s condominium overlooking a golf course in the Salt Lake Valley, Christian Hamula, one of 20 student aides who rotate attending to him around the clock, helps Mikita position his wheelchair underneath a painting of Franklin D. Roosevelt, the 32nd president of the United States and a man who also used a wheelchair due to the polio he contracted when he was 39.
The painting is a reproduction of a photograph of FDR that ran in a 1960 issue of Look Magazine, a copy of which Steve’s physician father brought home to show his 4-year-old son.
“Look at this guy,” he told him, “look at what he did. You can do great things too, if you just focus on what you can do and not on what you can’t do.”
The painting “is a tribute to really him, to my father,” Mikita says. Without him, “I wouldn’t have known the excitement of growing up different.”
That point of view has made all the difference.
“I feel as though I accepted the opportunity to come to earth with a specific set of both strengths and weaknesses,” says Steve. “And I didn’t understand how significant the weaknesses would be, but I knew they were as purposeful and meaningful as anyone else who has ever come to earth.”
Over the past two years, the man who cannot move has watched the world deal with COVID-19 from a unique perspective.
“People are so stunned by this pandemic as if they never conceived of something challenging happening during their life. But that’s what this life is for — for navigating and loving each other and serving each other notwithstanding what comes our way. If somehow you missed that memo then it’s time you realize this is why we’re here, to serve others through the good times and the bad times.”
This latest new lease on life delivered by the new drug — “it’s not a cure, it’s an intervention, it’s bought me more time” — means more opportunities to live life to the fullest.
“Every year is a gift,” says Mikita, who each day looks forward to all the things he can do — he plays Wordle, he’s in a fantasy football league, he scratches his head over what the Utah Jazz are up to, he reads ebooks on his iPad and he couldn’t wait for the “Game of Thrones” prequel.
And every morning he asks to be led to someone he can help.
“It’s always a prayer I have to make someone better, to give them encouragement or comfort. There’s not very much left that the outside world could say I could do, but as long as I’m able to think and reason and innovate and iterate my vision, I’m able to put myself in a position where I can impact people’s lives. I think that’s kind of the secret sauce of my life.”
