I’ve lived my entire life with the genetic disorder called Neurofibromatosis (NF) – that word alone is a mouth-full.
Other than living with it, the most difficult thing about it is trying to explain what it is. To put it simply it’s a disorder that affects the nervous system, causing tumors to grow on nerve endings. That’s just part of what seems to be a never ending list of symptoms. For the most part these tumors are harmless and usually only cause pain if they’re hit too hard or grow in sensitive areas of the body.
I have always found it difficult to describe what life is like with NF. Despite it being the most common genetic disorder in the United States, about 1 in every 3,000 people, very little is actually known about it. The severity will change from person to person, even within families.
For myself, I must admit, I lived a blessed life compared to the friends and family who also have it. I have seen so many others, with greater severity of it than myself, be just extraordinary. Many of whom are younger than I am. From them, I have learned some amazing life lessons. What follows are some of those stories and lessons.
I met Sam, a young man barley into his teens, in the summer of 2008. It was at a camp for NF. It was his first time there and he spent a lot of the time being sick from his cancer treatments. (Sometimes cancer can happen with NF.) That didn’t stop him from having fun. Any chance he got to join in, no matter how sick he felt. There was never a time he didn’t have a smile on his face. During the dance on the last night, he spent a lot of time laying down on a cot to the side of the dance floor. An up-beat song came on and he told the staff he was with he wanted to get up. They thought he was going to throw-up, so they helped him up. He stood up from the cot and started to dance. The rest of the camp formed a circle around him and danced with him. On the last day, as everyone was leaving, Sam came up to me. He thanked me for a fun week, gave me a hug, and left. That October, Sam lost his battle against cancer and passed away.
Sam taught me two things. First, there’s always a reason to smile and have fun. Even while you’re going through a difficult time in life, it’s still beautiful and any chance you get to dance, you should.
The second, it’s a little hard to put into words and describe. I learned this after Sam passed. While he was going through his own treatments he saw other children in the same situation. He knew how scary, difficult, and lonely being in the hospital can be. Sam began to collect stuffed animals for them. He would give the stuffed animals to other kids so they wouldn’t be alone and would always have a friend. Helping others while you’re down yourself…
Nick was another friend I met at camp. Just like Sam, he too fought against cancer. Every summer at camp Nick loved to tell jokes and pull pranks. Even during his last summer, that’s all he wanted to do. Even if the joke was as silly as “Hey guess what? Chicken butt!” Nick taught me that there’s always a time for jokes and laughter. Life would be boring without them. Nick passed shortly after that summer.
Chef Dave or Chef David; Mr. Dave – depending on who you talk to. Is a friend, mentor, confidant, and a brother from another mother that I’ve known for over fifteen years. The two of us met when I was a young teenager. A teenager full of anger towards the world. Growing up I didn’t have many friends. My school days were filled with being picked on and bullied. I didn’t fit in anywhere. Dave taught me that holding on to the anger from all that isn’t good for you. That as long as you accept you for you then to hell with whatever anyone else thinks. He taught me that life is too beautiful to be angry all the time.
One of the biggest lessons that i’ve learned has come from a man I’ve only met through Facebook. I hope to meet him in person one day.
One of the hardest parts of NF are the tumors that become visible. Most people have never heard of it and even more don’t know about it. Some tumors can grow to be very large or in large groups of small tumors, that take over portions of your body. For those who’s NF has caused this take on the daily and daunting task of going outside and being stared at.
Reggie has a tumor that covers half his face. Because of it he spent years in hiding. One day he decided to stop hiding and step out into the world. He taught me that true beauty is found within yourself and you don’t let the world see it you’re depriving yourself of your own beauty. Reggie taught me that you should love yourself just the way you are. He taught me that true courage is accepting yourself. The world is already hard enough as it is, why make it harder by beating ourselves down?
May is National NF Awareness Month.
This is dedicated to all of my friends and family who have changed my life.
Because without NF and you this piece would be impossible to write.
In Loving Memory of
Sam, Nick, & the many more who have passed from NF Cancer
God Bless and Positive Vibes
To learn more about NF visit: https://www.nfnetwork.org