Stories of NF: Charlotte B.

I’m not sure when I learned about my diagnosis. I do remember when they found my first tumor though. It started out with just needing glasses. I still remember going to the doctor and seeing the line that, in a way, sealed my fate. “The light is not as bright in this eye,” is what I told my eye doctor. Not long after that, I had an MRI. They found a tumor on my optic nerve and one in the back of my head. So then I started chemo. It’s been a rocky road ever since. Then a few years later, I had bad MRI results. So I got chemo again. Today, I got bad scans. We are waiting 6 months to see what happens then decide a plan of action.

NF (type 1) is just a thing about me. It’s been there for as long as I can remember, so I have gotten used to it. I want to say that it does not really impact my life, but it does. Because of my NF, I am partially blind. This is really an everyday struggle for me. I have to make accommodations and put in a lot of extra effort. For example, in school, I need all my tests, quizzes, handouts, books, everything bigger. I am almost 15 and I don’t feel comfortable crossing the street alone. It sucks. It affects everything. It’s a lot of emotional baggage. But, I live with it. I don’t know any different.

NF impacts my life a lot, but I don’t let that stop me. I still do things. I am a three-sports athlete, I am an artist and I am loving life. NF impacts a lot of my future plans. I will never get my driver’s license, which is hard for me to accept. I will always have trouble navigating around the world. I will always wonder if there another tumor? Will I need to do the drip chemo again? But, the future is both unknown and full of potential. I have a lot of things I am looking forward to. I am excited to go to camp this summer, I’m excited to travel. There is just too much to look forward to letting my blindness (caused by NF) to get in my way.

It’s an everyday struggle. I used to not think about it. One thing that helps me is humor. I like to make jokes about my blindness. It makes me happy. Kinda crazy though, right? Also, I have found activism through the Children’s Tumor Foundation and I would love to work more with them. I just like how there are other people out there like me and I want to spread awareness. I believe that NF has given me an interesting outlook on life. I believe that it has given me compassion for people. It has shown me how strong I am and how far I can go. To stay motivated, I try and live as much as a normal life as I can. One thing I do is I always like to have something to look forward to. Whether it is a school dance, a sleepover with my friends or a holiday, I like to be able to occupy my mind with the thought of excitement.

Currently, I am a freshman in High School. I run cross-country, track, and swim. I really love to be active. I love art. One of my favorite things to do is to go to art museums and just stay for hours looking at the paintings. Kind of ironic considering it’s hard for me to see them (I find that funny). I love fashion. I like politics. I want to be in Congress when I am older. I like to hang out with my friends. I am a big fan of shopping. I really love to listen to music. I also want to be a writer when I grow up. I really try to not let NF define me or let it get it my way.