Imagine you are walking by a beautiful garden. The flowers are well kept, the colors are jumping out at you, the aroma is dancing around your senses, and the roses are so romantic you start to feel like you are in a fairy tale. But there's one thing you don't notice -- their thorns. Then you start to wonder, how can roses survive in such a chaotic and dangerous environment? Well that's what having cystic fibrosis is like.
When I was born, my family knew something wasn't right. My mother, a nurse, realized I had been sweating in my sleep and mentioned it to the doctor. After various tests, it was a sudden lightbulb moment and voila! After a sweat test, I received the diagnosis at 6 months old.
In 1994, there was no research, much less hope for children born with CF in a third world country. I am proud to have been born in the breathtaking Andes mountain range in Colombia, South America, but it was very lucky that my stepfather met my mother, and we were blessed with the opportunity to migrate to the United States in search of a cure. My mother packed up the very little we had, as many immigrants do, and we left our entire family -- consisting of twenty plus members -- and journeyed to a world unknown.
My childhood with CF was joyful. I was like any other child -- playing outside, going to gymnastics class, playing soccer -- you name it. My family was aware of the precautions they needed to take with a child with CF, but they never allowed it to hold me back from doing the things I loved to do, but most importantly, attending school.
Life with CF was the only one I knew; therefore, it didn't bother me. I learned through my disease that I wanted to educate others about it for it was still somewhat unknown. I was the only child in my school with CF, which helped me avoid cross-infection, and I would write reports and projects about my disease in elementary and middle school. In high school, I raised money through bake sales, donating to the CF Foundation, and in 2015 I was in the Miss New Jersey Pageant and spoke about CF as my platform. I had found a way to raise awareness which I've continued into adulthood.
Through all these experiences, the quote that I view as a double-edged sword is, “I didn't know you had CF! I wouldn't even be able to tell!” That's the trickery of CF -- it is an invisible disease … until it's not.
I have not mastered CF, for it is a continuous battle that seems impossible to beat. But there are “cheat codes” to this battle, and I want to share them with you:
- Remain positive -- even when it seems downright impossible, you've made it yet another day.
- Exercise -- this will become a tool for success and fewer hospitalizations. I once avoided the hospital for four years. It works, and I gained confidence in the process.
- Once you find your support system made up of your “ride or dies,” keep them close. These are the people who will continue to have your back (or pound on it for chest physical therapy), and it will remind you that good things are to come, to remain positive, and that they genuinely want to see you do better -- even when you think all hope is lost. They accept you, no matter what your FEV1 is.
I always explain to others, “It's like my body is fighting against itself,” and as sad as that may be, it's also quite beautiful that my lungs genuinely want to keep blooming. I strive everyday to represent myself not only as a CF patient but, more like a rose -- growing among the sharp thorns; staying strong but remaining delicate.
