I was diagnosed with rhabdomyosarcoma (RMS), a rare cancer, at 3 years old.
From ages 3 to 11, a Manhattan cancer center was my home away from home. I wound up getting 2 ostomies—colostomy and urostomy—for a better quality of life. Can you imagine, at age 3, doctors not thinking you’re going to live?
After age 4, cancer never returned, but I didn’t understand why I had these bags or when to change them. Kids didn’t understand why I was always out of school, and it didn’t take long for teasing to start about the smell. I was taken out of school to get homeschooled, and during that time, my ostomy nurse retrained me on how to care for my bags.
I went back to middle school with low self-esteem. I asked myself, “Is this how my life is going to be?” and “Why me?” It was a secret I had an ostomy. I didn’t want to talk about it… I just wanted to go on with life.
My parents always reminded me I would be okay and do what I wanted in life. When you’re young, you hear what they say, but you don’t quite believe it yet. Playing high school sports helped me believe this, along with maturing and my faith in God.
Mom encouraged me to share my story, so I did. People were inspired, which inspired me to talk about it more. Sharing my story with a purpose turned my life around. That’s when I discovered the ostomy community.
I started sharing bits of my story at church and on social media. People wanted to know who I was—this ostomate who is also a model. I previously told myself, “Modeling with an ostomy bag… that won’t go.” But Mom told me to try it and see.
“I AM MORE THAN MY OSTOMIES. THERE IS MORE TO LIFE THAN THIS.”
Jearlean’s Advice:
Remember that beauty starts inside out. You have to find it, whether it’s through affirmations, scriptures, or prayers. Look at your reminders to help motivate you and put you in a positive place. Get back to your hobbies, and remember—you can do anything with an ostomy. When you can find your “why,” it makes life so much more meaningful.
Jearlean’s Instagram: @msjearleantaylor
