I found out I had NF1 when I was 14 years old. This happened only because I developed a few strange lumps under my skin on my forehead, one doctor thought it may be fatty tissue, and another doctor thought he would remove them and just to be sure. 16 years, and 6 surgies later I am a semi healthy 32 year. I can’t say the journey was easy, but it was a lot easier then so many other peoples that I guess I feel lucky.
The worst surgery for me was the removal of a 4 inch tumor that was on C1 and C2 of my spine in 2008. I was in the hospital for over a week and a half, and seem to have constant neck and back pain, most self inflicted because I tend to over do it, and enjoy going on the thrill rides that flash warning signs of not riding if you have back or neck injuries. For one thing I do know that bungie jumping is out. I have another one lower down on my spine that may need taken out eventually, but my doctor is afraid that it may effect the use of my hands, so for now we wait and watch.
The hardest chose that I had to make was deciding not to have babies. For so long I hid the fact that anything was wrong with me, I guess I felt ashamed, and maybe I still do a little, because there is only a small number of people that know I even have this condition. But one night when I was about 19 I was bored so I googled NF and started reading about how each case was different, and how 50% of the time you can pass it to your offspring. Then I came across a website that had a few pictures of beautiful children and there struggles with NF. I don’t know why it hit me so hard, but it did. I got my tubes tiied a few months later. I also have a brother that has a disability that is not related to NF and one day when my mother is gone he will be living with me, so that also helped me desided that even though I have lots of love in my heart, and love children that if I ever did really want a child I would adopt one of the many out there that need a kind home, and someone to love because they to have a disability and somehow got left behind in a world where so many people do because they don’t match the perfection the society sometimes expects.
I look at myself in the mirror everyday and my insecurities make me feel bad for the person looking back at me. I get upset over my forever increasing bumps, my constant headaches, and how I feel tired all the time, how a surgery makes one side of my face droop slightly, and how my heads a little larger then most peoples, or how my hair is pretty thin now.
But I try to remind myself I also have a wonderful job working with people that have disabilities, I have a wonderful person that I want to spend the rest of my life with, I have a handful of friends that I love, and see all the time. I also have a great family that is everything to me, so I also am one of the lucky people that have alot of love in my life. I really believe that everyone should be treated as an equal, and you should be as nice as you can to those around you, because you really dont know what they are going through either, and every warm gesture of kindness helps a bit I am sure.
The future is unknown to everyone, and I think that is even more so for us that have NF, everyday we wait to see what new thing we have to over come, what new bumps we get, new symptoms we may have, and maybe just maybe what cures they will come up with.
To everyone that has NF may your future be long, and may you always find joy around every corner.