"I don't need tattoos. I have spots. I love my spots. It's so different and weird. As much as NF worries me about my health, I'm not sure I'd trade it in to be “normal”. It's depressing sometimes and makes me feel like a freak when I get socially awkward, which is all the time. I'm not sure how NF will affect my future. I just know it's going to kill me someday.
I was diagnosed with NF1 when I was about two. Before Kindergarten, I was in Special Ed for a year (I think) before going into mainstream school with extra help, speech therapy classes (which I was stubborn in). I had many, many MRIs in my life, probably a few a year, which has now waned down to one every other year or so. I'm lucky to be this healthy. I'm lucky to have the problems I have with coping. My problems are more psychological and how I look, how I talk, and how social I am. And yet still I struggle. I still feel like a freak.
It's something I never talk about to normal people. A co-worker asked me about it after seeing it on my Facebook page, and I brushed it off, somewhat embarrassed, like a kid with its hand caught in a cookie jar. I don't talk about it to people I don't trust, which is nearly everyone. No one knows about it anyway. To them, I'm just a bit “off.” I'm okay with that. I tell people altered versions of the truth. “I just have bad hands.” I say, instead of “My NF affects my fine motor skills and become clumsy, so it's very hard for me to write, pipe, and crimp neatly.” (I have a Baking and Pastry Degree, so decorating skills are important, and I lack them severely) It's too much to explain and understand. It's best that they don't know. I'm used to the teasing and comments. But Facebook, believe it or not, has made me open up more about my NF than anything else. I've found so many friends, who make me feel so accepted and normal with how I feel and what I go through. It's so comforting to know there are people out there with things you can relate to with MRIs, nerve pain, itchiness and tumors. There's always someone to talk to.
I'm not sure how I feel about NF. I think about it every day. Wondering when it will get me. If my thoughts about only living to 25 will be true. If I do make it past that age, what will my life be? It's going to get me someday. Good health doesn't last forever. You'd think that thoughts like this would challenge me to do all sorts of things: skydive, travel to a distant country and eat bugs, swim in Hawaii, climb mountains, eat cheese in France. But I don't. Not yet. Doing so would seal the deal of my death date. So I'm here. Working twice as hard as everyone else just to prove that I'm normal. A “high functioning freak”. My prognosis when I was two years old was I wouldn't make it past the mental/functioning age of 6. So for me, to have a job, college degrees, a car paid for with my own money, and a guy I'm practically engaged to is sort of a big deal for me. Small wins. Stuff you Normals take for normal is a small win for me. But I try to make something out of my life. I see the positive stuff that is in NF. How hard I try at my job. Being compassionate and friendly to people who are different. Possessing deep empathy. Trying hard to be my own person and make the best out of my situations. And of course, I love my spots. I have the affection for them like one with a tattoo would. The blotches of cafe au lait on my skin. They stick out, like some sort of Freak Alarm. If I didn't have my spots, if one day they were to be gone, and I'd have normal skin, I would feel at a loss. NF is a part of who I am, and while it may kill me someday, I have no idea what I would do without it."
Thanks so much Jenni, for helping to show others that you can have a disorder.....But THAT disorder does NOT have you! BIG HUGS SWEETHEART...you are my THRIVING HERO!