Texas Tech University

Alumna on Muscular Dystrophy: 'It's Just Life; It Doesn't Determine What I Do'

K'Leigh Sims

October 29, 2015

(VIDEO) Kiva Carson, now an elementary school teacher in Lubbock, was diagnosed with the limb-girdle form of muscular dystrophy when she was just 2 years old.

Kiva Carson
Kiva Carson

Walking, running, jumping, climbing – things almost everyone has the ability to do. But when Kiva Carson was in middle school, those things were taken from her due to the progression of muscular dystrophy.

Carson, now 24, never let muscular dystrophy stop her from living a normal life and she doesn't plan on letting it stop her now.

“For me it's just life,” she said. “It's not any great feat. It was just the hand I was dealt and I just deal with it. Muscular dystrophy has always been a constant companion to me in some way. It's been something that determines how I do things but it doesn't determine what I do.”

A native of Olton, Carson was diagnosed with muscular dystrophy when she was only 2 years old. She said her parents saw something wasn't right and decided to get it checked out.

Kiva Carson

“I always joke about how my sister is an over-achiever, always meeting her milestones early,” she said. “and I wasn't necessarily meeting them late, but my parents noticed that something was up.”

When they took her to the doctor, they found out it was muscular dystrophy, a group of diseases that cause progressive weakness and loss of muscle mass allowing them to deteriorate over time. While there are different kinds of muscular dystrophy that can affect a person's ability to breathe or swallow, Carson was diagnosed with the limb-girdle form of muscular dystrophy, a form that affects only her limbs.

Carson said growing up with muscular dystrophy wasn't always “rainbows and butterflies,” but she said her parents never treated her differently than her siblings.

Kiva Carson

“My parents never gave me special treatment to a certain extent," she said. "It was never an ‘Oh, let's feel sorry for Kiva' type of situation. My parents encouraged me to always do what I needed to do to get things done and be successful, and they've always been more than willing to help me.

“My parents have always fought for me and gotten things done to make muscular dystrophy work for me. My dad is a MacGyver and is great at making these contraptions to make things work. Whenever I was younger I wanted to water ski so bad but couldn't pull up, so he'd put me on his back and we'd water ski together. He has always adapted things for me to make things work.”

Kiva Carson

Carson grew up walking and running like every other child up until middle school. She played with her siblings, had chores and grew up with a relatively normal lifestyle despite having muscular dystrophy.

She was a mathlete, student council member, volleyball and basketball manager, cheerleader, senior class president, participated in youth group at her church, 4-H and showed goats.

Once she graduated high school, she attended Texas Tech and earned her bachelor's degree in early childhood education and her master's of education in language and literacy education. She participated in Paradigm, Raiders Sisters for Christ, National Science Teachers Association and was on the homecoming court. Her favorite thing at Texas Tech: the football games. Carson said that within her six years at Texas Tech, she may have missed only two games.

Kiva Carson
Kiva with Caleb Fisher

“My time at Texas Tech was shaped by the people I got to know there,” Carson said. “It's not the experiences that make it worth while but the people you meet. I've been blessed with some of the greatest friends that have carried me up mountains, both figuratively and literally.”

Carson and her friends are constantly going on adventures. They've climbed up mountains, swam with jaguars while on a cruise, gone intertubing, cliff-jumping, parasailing, four-wheeling, snowmobiling and wake-surfing. Like she said, muscular dystrophy may make her change how she does things, but it doesn't change what she does.

“My life is doable because of the people in it,” Carson said. “I wouldn't be where I am today if it weren't for my friends and family.

“I do attribute a lot to my faith in God and knowing that he does things for a purpose. And while I may not know that purpose, I trust in him continually.”

One of her closest friends, Caleb Fisher, external vice president for Student Government Association and videographer/owner of C. Fisher Productions, recently produced a short film that told Carson's story. He believed her story could be an inspiration to people all over the world.

“I met Kiva when I first transferred to Texas Tech my junior year,” Fisher said. “I had never met anyone quite like Kiva. Her uniqueness is not in her disability, but in her passion and desire to make a difference in the world around her. Kiva has a perspective on life that I have never seen before. She cares infinitely more for other people than she does herself and always has a drive to make the most of the life she lives.”

Kiva Carson

Carson said she still has much more to accomplish. Now with two degrees in hand, she is currently a fourth grade reading teacher in the Lubbock Independent School District. She said she hopes to step foot on all seven continents, have a family one day, write children's books, become a reading and writing specialist and ultimately be the best Kiva Carson she can be.

“You can't change what you were given and you've got to do your best to push through it,” she said. “I don't let it stop me from doing what I do. I have high goals for myself and my life and things that I want to accomplish, and I'm not going to let muscular dystrophy or anything else stop me from doing it.

“No, it's not ideal. This isn't something I would've chosen or would wish on my worst enemy, but it's what I have before me and it's up to me to decide if it'll make or break me.

“No one knows what the future holds.”