I’ve had necrotizing enterocolitis and a colostomy for the past 18 years, since birth. Almost every single time I tell someone this, I get the same reaction – gaping mouth, eyes wide open, sympathetic looks.
Sometimes I hear this: “Wow, that must be so hard!” or “Wow, you are so strong!”
Other times people look stunned and ask: “What was wrong with you?” or “That’s crazy, how do you do it?”
Then I go into my talk. How I was born with a very rare congenital illness which could’ve killed me. I explain what necrotizing enterocolitis (NEG) is, and next about the ostomy. It’s the same initial shock when people realize that I’m still sick. I always have been, and always will be until there’s a cure. Even with a cure, I’ll still have a colostomy for the rest of my life.
Someone once told me not to think of myself as disabled, but rather “stronger than the average person.” Apparently, I’m not supposed to let my conditions define me. But this disease and ostomy really have defined me – they're part of my everyday life. It’s shaped who I am today and I’m proud and grateful for that, but I never wanted to be defined as a “strong” person.
I didn’t go through 12 surgeries to give people hope… or for people to pity me… or to show others that they can survive anything if I can. Because when you are a teenager taking four honors classes in high school, but you’ve also been in the hospital unable to eat for three weeks… what choice do you really have?
Being strong is extremely hard on days when NEG is getting the best of me, or when I’m tired of wearing a colostomy bag. So I got into the habit of bottling up my emotions and hiding the physical pain so others wouldn’t see it. I felt expected to do things in a way that was "normal" and act invincible. Like I can endure anything and never feel helpless or scared.
Some days in my mind, I am invincible. I can exercise, work a six-hour shift, and write an eight-page essay, all while dealing with a normal level of pain. Other days, I sit alone in my car and just cry about everything. Then later, I feel huge shame because I’m not brave… I’m not courageous. Does that really sound like a strong person?
My strength is different because it comes from a place of survival. I had to be “strong” to get out of that hospital. I had to endure the pain because I didn’t have a choice. I had to tell this disease who’s boss because if I let it win, it would take me down. I just picked myself up again and again. When you refuse to die, what starts to happen is that you become a little tougher each time the illness tries to knock you down.
I know it might sound like I’m ungrateful for all the support I’ve received from some amazing people, but ironically whenever anyone calls me “strong” it upsets me. If I give others hope, or have some sort of dreadful life that makes you feel better about yours, then you’re welcome. I am sincerely happy that my story has benefited anyone in a positive way. I’m really just living my life the best I can with what I’ve been given. I never had the choice, I was born this way. To me, that’s not incredible or inspirational.
While I have a hard time living up to a definition, I know that sharing parts of my life on social media as an 18-year-old with a colostomy brings awareness to necrotizing enterocolitis. I want to help as many young kids as possible who have a rare disease or ostomy. I hope they realize that you don't need to be brave to speak up. My wish is that one day there will be a cure for NEG, so no one will need to be “strong” anymore.