About Utah: Steve Mikita's not surviving — he's living

Published: Friday, April 15 2011 12:35 a.m. MDT

Steve Mikita, 55, is believed to be the oldest living person with spinal muscular atrophy, which he was born with.

Lee Benson, Deseret News

I don't care what you're up against, what your challenges are, climbing Everest, swimming the Channel, fighting the high cost of living, every day facing a new ache and pain.

On the degree of difficulty scale, you will never approach Steve Mikita.

Steve has a degenerative neurological disorder called spinal muscular atrophy, which he was born with. His life has been one long parade of losing things: the ability to use his hands, feed himself, hold his head straight, wipe his nose, move.

Although no one keeps track of such things, at 55 he's believed to be the oldest person ever living with SMA.

Living being the operative word.

Mikita makes Mr. Incredible look like a slacker. Just getting up in the morning takes him two hours — and three aides. They bathe him, shave him, brush his teeth, dress him, feed him, knot his tie, the basic royal treatment. Overall he has a staff of 15 college-age aides who rotate around the clock, doing all the physical things for him that he can't do for himself, which is everything except talk.

"I'm the CEO of my body. I direct the operation but don't do anything," explains Steve with his trademark humor.

He spends his daytime hours in his electric wheelchair, which he can maneuver by nudging a toggle switch. He's rarely alone. If his hand slips off the toggle switch, he's as capable of putting it back as being the next man on the moon. He needs to be constantly positioned in his chair, his head adjusted regularly so he doesn't choke on his own saliva.

He can do three things: drive that chair, work a special computer mouse and speak.

Mikita's reaction: That's plenty.

He doesn't spend his days feeling sorry for himself. He doesn't stay at home, languishing in bed and watching movies all day long. He hires that staff of 15, pays each one of them out of his own pocket (which raises constant flags with the IRS, where they cannot grasp anyone having that many medical expenses), dresses like the cover of GQ in the trendiest fashions and with the latest haircut, and goes to work every day at the state Capitol where he's been an assistant attorney general for 29 straight years.

He's no figurehead, no charity case. Maybe he can't move but he can think. Man, can he. His IQ was once measured at 160, and with all he's used it it's probably higher than that now.

He was made to lawyer. He is a terrific advocate. "The great irony is I'm very forceful, very assertive, very aggressive — and I can't move," muses Mikita, "I'm the most independent dependent person I know."

The secret to his longevity?

After pondering the question, he gives a short answer and a long answer.

The short answer: "The will to live."

The long answer: "Because of the way I was raised."

His earliest cognitive memories are of William and Mildred Mikita telling him that he could be anything he wanted to be, that he wasn't different, he was unique.

He remembers his mother telling him over and over: "You've been given more than you haven't been given" … "God gave you a great mind; you better do something with it" … "As long as you have choices, you have life."

Consequently, "I've never seen myself as different," says the man who cannot move. "I have abilities and disabilities. They might be different than yours, but we're really no different. I choose to concentrate on my strengths."

He repeats the mantra he used to repeat continually to his mother when he was a boy: "I'm like everyone else, I just sit all the time."

As a tribute to his mother, Steve has written a book, "I Sit All Amazed," just released by Deseret Book in time for Mother's Day.

"This book is about understanding how to live rich, meaningful lives — even though our lives can have very difficult and tragic turns," Steve writes in the book's introduction. "All of us experience things that we never predicted could or should happen to us. … It is my hope that this book will help you face, bear, and even overcome the trials and tribulations in your life and your children's lives."

Words to live by from one who talks the talk and walks the walk like no one you've ever seen — without ever taking a single step.

Lee Benson's About Utah column runs Monday and Friday. Email: benson@desnews.com

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