Miah Konklin is a delightful, articulate, enthusiastic young woman. When she was a child, she loved to read. She’d go to the library, ask the librarian for a suggestion and bury her face in the book. When Miah was in fourth grade, her mother noticed Miah was bringing the book closer and closer to her face. The first doctor prescribed glasses, but when those failed to solve the issue, they pursued other avenues. A visit to another doctor gave no answers. A third. A fourth. One of these doctors, and even some family members, suggested “Miah was lying for attention.” Miah is now 18 years old and you can still hear the frustration in her voice when she recites the story.
Finally, at Children’s Mercy Hospital in Kansas City, Miah was diagnosed with Stargardt’s disease, an inherited disorder of the retina. The disease causes progressive damage of the macula, which is a small area in the center of the retina that is responsible for sharp, straight-ahead vision. Miah has her peripheral vision but her central visual acuity is 20/200. Basically, if you can see a person 200 feet away, Miah needs to be as close as 20 feet to see the same person.
She said receiving the diagnosis as a child was likely beneficial because it made “less of an impact”. Her schools have been supportive and accommodating, her coaches allowed her to participate in planning routines and her friends never faltered in their acceptance. Miah was even named co-captain of the cheerleading squad sophomore, junior and senior years.
“Not Even For the Smallest Stuff”
Miah was lucky to have parents who pushed her towards independence. “I had to grow up faster and I was forced to ask for help. No one likes to have to ask for help.”
When asked how she would advise other parents facing a similar challenge, she said, “Be patient and don’t take away their independence. Don’t allow someone to become dependent — not even on the smallest stuff.”
With the support of her mom and her determination, Miah refused to let Stargardt’s force her to the sidelines and she committed to staying active. Many kids and their families would give up sports as visual acuity continued to decline, but not Miah, not her mother!
When Miah was diagnosed, she was an active cheerleader. As her vision started to decline in fourth grade, she never stopped cheering and never considered giving up. She just finished her senior year of high school as co-captain of her squad. The grant from the Foreseeable Future Foundation allowed her to offset the costs of camp and uniforms.
Miah highly values her participation in sports, noting the friendships she has made. She is also adamant her children will be involved in sports some day.
It’s important to note that cheerleading wasn’t all fun and games.
“Sometimes girls would make fun of other girls. I didn’t understand the concept. I think maybe it’s because I was that girl. I wasn’t bullied but I could hear people whispering behind my back. I knew there were rumors. I don’t like girl drama.”
New Pursuits & New Frustrations
As Miah’s cheerleading career has ended, she’s discovered a new passion to learn how to drive. Outfitted with biopic telescoping lenses, she and her dad take to the streets.
“Not being able to drive – having to depend on my parents to get me places – is very frustrating. I don’t want to be dependent. Or I want to be as independent as possible.”
Part of this independence includes entering the work force. Similar to other teenagers, she is seeking employment in fast food or retail. She has been interviewed, but the job always goes to someone else.
“I don’t want to believe it’s because of my vision, but how can I not? I know legally they have to accommodate me but that doesn’t mean they will.” Miah is confident she can do the job, she just needs someone to give her a chance.
Miah is planning to attend Cowley College in her hometown of Mulvane, but she is currently undecided on her degree program. Cowley has a cheerleading team where her mother cheered years ago. Maybe Miah will pick up the pompoms again.
There Is A Reason
One of the most interesting aspects of my interview with Miah was her matter-of-factness. She was clear and honest, but she was not judgmental or critical.
What I’ve discovered as I’ve talked with people who are visually impaired is their acceptance and their willingness to find the good in their situation. Miah Konklin was, and continues to be, no exception.
“I’ve always believed there was a reason this happened. I may never know the reason, but there is one.” ~ Miah Konklin, age 18