By Cristina Kline
“Cyclopes, one-eyed monster, Hunchback of Notre dame!”
These are a few names I would hear throughout my school-age years. Kids can be mean, but being a kid myself at that time I didn’t understand. I played it tough. I pretended it didn’t bother me. I was strong. Those were just words but you know what? Words hurt. I’d cry in secret when nobody was watching. I wouldn’t tell my friends or family what I was going through and how it affected me. I had to be strong for them. I knew if I told my family they would suffer too. So, I kept it to myself. I kept it to myself for many years.
I was diagnosed with Neurofibromatosis Type 1 (NF1) when I was two years old. I am now 31 years old. There was a tumor in my optic nerve which caused the loss of my right eye. Neurofibromatosis causes bumps (fibromas) all over your body and can cause deformity. For me it did both. I have many bumps and a deformity in my face. Hormones made it worse, so, after puberty it got worse and so did the teasing and the stares. As an adult I realized, adults won’t call you names but they still stare. I guess after all these years you get used it. People don’t think you notice when they’re staring at you but believe me, you notice. Childhood was hard. Middle school and high school are not easy as it is but it was twice as hard for me. For those who struggle with any type of disorder you understand what I’m talking about. So, elementary school thru high school had its ups and downs. What got me thru was the love my friends and family showed me. They didn’t know it, but they were my rock.
I graduated college and started a job that I absolutely love. Things seemed to be going ok. By this point in my life I hadn’t really been in a real relationship. Little flings here or there but nothing serious. I had convinced myself that it was because of my NF. No one really wants to get involved with someone like me. I wasn’t pretty enough and it wasn’t that I was ok with it, I just finally accepted it. To say it was easy would be a lie. It felt awful but it was no longer a possibility for me to meet someone who can see passed my NF so it became less important. In my mid 20’s I had a breakdown about having NF. I finally opened up to my family about it. I told them everything I felt. It felt good opening up to them and not having to pretend anymore. I finally decided that my feelings were more important than protecting theirs and for once I did something for me and you know what? I felt stronger. Don’t ever feel like you can’t share what you’re feeling for the sake of protecting others. You’re allowed to be selfish sometimes. That’s what I learned from that experience.
I finally felt really good for the first time in my life. I finally felt like I had NF, it no longer had me. I fell in love. I fell in love with health and fitness. It took a long time and I’m still working on it but I finally started to like my body even with those damn bumps and all. I didn’t feel like I had to cover up anymore. I felt more in control of my body and started to treat it right by eating healthier and going to the gym. The gym was a place where I felt like I could release all the anger, frustration, and stress I carry. It was my happy place. Then when I least expected I fell in love again, but not with the gym, with my boyfriend. I had finally met someone who saw past my NF. He saw me. As a matter of fact for months my NF never came up, which at first I thought was strange, but I went with it, until I finally wanted to talk about it and he was wonderful. I was in a good place. I have a supportive family, I met someone who really took the time to get to know the real me, and I had my happy place.
But then my happy place was taken away from me. After many years of attending the same gym I was pulled into an office and was questioned about my NF. “What was it? Was it contagious? Could I get a doctor’s note?” I was told other members were complaining about me. I was told I had to prove it wasn’t contagious or else I had to stop going to the gym. According to them I was “misusing” the gym. I couldn’t believe this was happening. It felt unreal. It happened again. Neurofibromatosis won. It took something else away from me. I felt defeated. I felt hurt. But right away my support system kicked in. My boyfriend, my family, and my friends stood by me. I realized then NF didn’t win. We did.
I know these moments of feeling defeated will never go away. I will always have the “I hate NF moments” and NF will sometimes get in the way of something I want to do but can’t. Having neurofibromatosis has and will always be a challenge in my life but what it has really taught me is when you can’t change the circumstances you are in, you have to learn to change your attitude towards them. It’s not easy but my one piece of advice to those who struggle with anything in life is talk about it. Once you start talking about it then you’re the one that becomes in control.
You have NF… NF does NOT have you.
