At just three months old, I was diagnosed with neurofibromatosis, which led to more than 30 operations and procedures, one of which left me with a damaged vocal cord and my signature raspy voice. No matter what medical challenges I have faced, or will face, I never allow them to stop my spirit. In fact, they have made me a warrior. I have faced many challenges in my life. While working on stabilizing my health, I dealt with trying to find my place in school and making friends. I could have easily gotten lost along the way, but that was not an option for me.
NF is part of who I am, and I choose to see it as a gift. Without my life’s experiences, I would not be where I am today. NF has taught me many lessons: to be strong, to be a fighter, to push myself harder, and to become a better person. Having NF has allowed me to show compassion toward others and to see that we are all beautiful and special in our own ways.
When The Dalai Lama was asked about the happiest moment of his life he replied, “This moment now.” I also strive to live by this standard. At this moment in my life, I am happy. I believe that if one were able to add up all of the happy moments of now, the total would equal a lifetime of happiness. All the accomplishments I've had, all of the people I have met and all of the places that have inspired me, all continue to lead me to my happiest moment: Now.
I think others with NF should be proud of who they are and what they have gone through. NF is “No Fear,” rather than “Not Fair.”
If given the chance, I’d tell my younger self to be calm and patient; everything unfolds the way it is supposed to. Don’t be afraid of who you are and what you want. Don’t hide it inside. I am living the life I've always dreamed of.
I believe that everything in life defines you; however, how you deal with a situation, day by day, is your drive. I love the place I am now. I feel that I am a compassionate person and able to love life. I truly find the beauty in everything- from being able to taste the salty air from the ocean or feeling the warmth of the sun from behind the clouds.
Bara Colodne, 37-years-old, lives with neurofibromatosis type 1 (NF1). She is a licensed social worker and lives in New York City.