Taylor Mattern doesn’t let cystic fibrosis stop her dreams or slow her down.
If anything, the disease has made her resilient –independent, well spoken, mature.
And yet the 18-year old Brownsburg High School student with curly brown hair doesn’t want to be known as just a person with cystic fibrosis. She wants to be herself, the one who enjoys soccer, works at a soft pretzel store after school and is getting ready for graduation.
“It shaped who I am,” Taylor said about her condition. “But it is not who I am.”
What’s the difference?
“I am so much more than just that.”
Taylor was diagnosed at 6 months old with cystic fibrosis, a genetic condition that affects the lungs and digestive tract. The disease produces thick, sticky mucus that clogs the airways and leads to lung infections. It also affects other organs.
Taylor undergoes daily treatment to manage the disease. Every day, she wears a vest that shakes to loosen up the mucus in her lungs. She does breathing treatments. Her room is full of medical equipment. Every three months, she has to go in for a check-up on her lung function.
It’s a constant reminder to Taylor of her condition.
“You just have to accept that that is part of you,” she said. “That's who you are. Because I've tried to pretend it’s not.”
Yes, there was a rebellious stage. During middle school, her parents wanted to give her more independence in her treatment routine. But Taylor saw that as her opportunity. Soon, she stopped doing the daily treatments.
Maybe it was just a teen’s struggle-against-authority phase, maybe it was denial about the condition. Whatever the reason, the results showed. She did not need to be admitted to the hospital then, but her team at Riley reminded her that treatment was not optional.
It’s a lesson that’s stuck with her.
“CF is not going to go away,” Taylor said. “It's not possible for it to go away. Ignoring it would be more harmful to me. It would be like hiding my past and my experiences which would be kind of pointless. Being in a situation like that it forces you to confront what life is and the point of it all.”
There's no point in lying about something as significant as that.”
When talking about cystic fibrosis and her own journey, Taylor speaks with confidence. Her life experiences have shaped her views on life.
She’s had to wrestle with life’s big questions. She’s had to learn how to stand up for herself.
“Most teens think they are invincible,” she said. “I’ve had to confront the fact that I’m not.”
Taylor is preparing to enroll at IUPUI this fall where she will study political science. After IUPUI, she plans to go to law school to pursue a career in disability advocacy law.
CF has certainly helped shaped some of her career interests – Taylor said she has had to learn how to converse with adults, stand up for herself and express herself. It’s what she wants to help others be able to do.
She’s currently involved with the Riley Teen Leadership Council, a group for teens who have been diagnosed with chronic conditions. The group works on advocacy projects and helps the teens develop leadership skills. Taylor is active elsewhere in the community, often serving as a representative at Make-A-Wish events.
“Even though you're sick, they are still teenagers just like everybody else,” Taylor said about her advocacy efforts. “They are still worthy of friendship and kindness. It’s giving a face and name to this sort of cliché group of people.”
And she’s been surrounded by support. The doctor that diagnosed Taylor when she was 6 months old is still Taylor’s doctor today. There’s a sense of community and support for Taylor that’s lasted since she was young.
“One of the best parts about Riley is the community around it,” Taylor said. “They are so important, everybody gets involved. Being a Riley kid is a community in and of itself. I love being able to say that I am really a Riley kid. It's really a group of people you can identify with.”