Fun fact; Cher is affiliated with this organization, after she stared in the movie “Mask” (A movie about a man who does not have NF, but has a severe facial abnormality) she became the national spokeswoman . Where I got to meet some amazing people, none at the time having NF, but some of the best friends I still have, this organization holds a long weekend retreat every year in different states, that year it was in Dallas, TX and me and a boy I met (mind you we were 6) ran off ahead of our mothers because we thought they were right behind us, I got put on a child leash so I didn’t do it again.
Even though the retreats, weren’t NF related they still helped in my self-esteem, and I got to meet Cher, even though this helped my self-esteem, it was always a constant battle against bullying and me just not understanding why I looked different. When I was in first grade, I remember going outside for recess and having a high schooler smashing my face into the brick of the building, then laughing about it, kids in my classes were also brutal, not only for how I looked but because I had ADHD and occasionally acted out couldn’t focus.
One of my friends from pre-school had moved to another town, but occasionally I would go to her house, like the days I didn’t have school and I would go with her, one of her classmates made a comment about my face “did she get hit in the face with a shovel” her response shut him up since she responded with “Why do you want to find out for yourself” she had always been one of my biggest supports. Due to some of the events I went through with bullies I developed a panic disorder and anxiety disorder from the way I was being treated by others.
I remember being in McDonalds with my cousin (she is a month younger than I am) and some kids were making fun of my face and my cousin walks up to them and asked them if they had a problem and to knock it off. This was also the year of my first surgery. It was discovered that some of my teeth on the left were blocked and didn’t have the ability to grow in, so they had to slice my gums to give them a chance, we also discovered that it was two tumors in my face and neck and not one but they were still connected, I had a few others in between to help them grow in.
If I remember correctly from age 6 to maybe about 12 is when the tumors were at their biggest, so growing up they were noticeable because I was still growing and they appeared to have stopped growing between those ages. Because of how I looked it made it difficult for me to make friends and people seemed to not want to be friends with me, at least I was still attending the retreats and I had finally met someone with NF, whose NF affected him similarly but on the opposite side of his face.
At least this time around I was disproving all of what the doctor told my parents to look out for, except I did have issues with motor skills, and had to participate in adaptive physical education to help develop the skills better, this also made the bullying worse since I was that awkward child who hated sports. All through elementary school, I was forced to do every sport available, on the field I had no focus and would pay more attention to butterflies and flowers than the ball. My peers would get so mad at me because I wasn’t into sports.
I was also traveling at least once a year to MA for MRI. I had an interesting experience with one, it was also the last time I was sedated for them, I kept trying to sit up in the machine so they were putting more anesthesia in me so waking up I had a bad reaction and basically was acting drunk. When I was middle school, I had to get another surgery because the tumors were obstructing the teeth from coming in and it pushed them into my sinus cavity, the oral surgeon I went to ironically have NF2 and understood the issues of NF.
He tried making a joke about being able to eat oatmeal through my nose, I didn’t find it funny, so when we decided on surgery, we also decided to remove all my wisdom teeth as well so it was one less surgery I would need later on. I don’t remember much more of middle school, other than having severe migraines and headaches basically 4-5 times a week, I blocked a lot of it out since it was relatively lonely and it was basically all bullying until 8th grade when I had my first actual friends who didn’t care that I looked different.