I am almost 30. My NF has been mild. Never really paid attention to it. But I'm almost 30. This is a progressive disorder. I am starting to notice things.
Like how I'm getting a new "pink freckle" (apparently called benign melanocytic lesions, in my case a "classic spitz") One of at least four. Which is worrisome, but normal with NF. But still something to look out for; since it could be just another pink freckle or melanoma.
I can say nothing new than what I've said now. But I still want to empathize how Neurofibromatosis is serious. It's progressive. We've come a very long way over the decades in trying to find treatments. And by that I mean in another decade or two we might actually have something we can use. We can cope. But that's about it.
Please, just allow that to sink in. Just for a moment. You can treat cancer. You can treat diabetes. You cannot treat this. It's going to progress and once it does, it will spread and take over and you cannot stop it.
Anyway. That being said, here's a post I am pretty proud of. Read it if you please. Or don't. It wont make NF go away. But maybe awareness will make a difference.
Sunday, May 1, 2011
Secrets; Neurofibromatosis Awareness Month
What kind of secrets do you hide? An embarrassing story? A difficult past?
Some secrets are fun; like what you're getting your fiance for his birthday. Some can be like burdens.. Thinking about the freedom of giving them all away.
For years and years my secret was my Neurofibromatosis. It was never something people needed to know about me. Classified information. A need-to-know basis.
To doctors, I had a neurological disorder (most of them had no understanding of it anyway). But to everyone else I was just a weird outcast. They didn't know the splotchy spots on my skin were cafe au lait spots, so normal with nf. They didn't get that I had poor fine motor skills, giving me terrible hand writing and even worse knife skills. That my speech impediments and difficulty with speaking is something I hardly can control.
Neurofibromatosis (NF) was my secret. I never felt ready to share it with anyone. The few friends I had didn't know, though I'm sure they knew I was some sort of freak.
But I've gotten to the point in my life where I need to let it stop being a secret. To own it. To be able to explain myself to people. I don't care if people know, but at the same time, I do care. Letting people in can be dangerous. Letting them in on such a big part of you? Should everyone be privy to such information? To trust someone that much with something so personal can only just end up hurting you in the end. So why the hell bother, right?
What would they think of me? A disorder no one has heard of. That not even doctors can understand or even explain. A disorder I can barely begin to explain to people who don't have it.
Those who do have it and families understand. It's a common neurological disorder that has so many variances and so many degrees of mildness and extreme. Some people may never experience the symptoms another faces every day. One person's massive tumor is another person's nerve pain or itching. Someone's learning disability is another person's curvy spine. One person's bumps is another person's vision problems.
It's aggravating and frustrating. My NF community ranges from large tumors, to constant pain to debilitating learning disabilities. Every one of us is entirely different but completely the same.
It's funny. I feel like I belong and don't belong in my NF community. I'm the weird one, even in my own disorder. Ha. I'm the freak in my own community of odd symptoms. Typical.
My case is mild in most ways but normal in others. The pain I feel is fast and infrequent lighting bolts of nerve pain. My blurry vision is triggered by extreme light is more inconvenient than a problem. My curved spine, weird bones and over-active senses. I have small bumps on my head, shoulders and back but aren't something I'm overly worried about. I have dark circles under my eyes; something I've noticed in many of my NF friends. It's funny how such strange things you don't even notice are common with my NF friends. It's a little comforting, knowing you aren't the only weird one.
It's the whole freak part. My issues you can't really see. Not physical. I'm insecure and self-conscience from years of bad motor skills, learning disabilities and A.D.D and failing, failing, failing.Years of bad school experience, both from the class room and from torture from students so bad it kept me up for days of sleepless nights. I went to an entire different school district to escape.
It's made me untrusting of others; wanting to reject them before they reject me. I want so much to be helpful and friendly, empathetic, but never wanting to invest too much into friendship in case I'm rejected. I'd like to have friends, but am so used to not having them I can't identify what it would be like.
You start to feel like people are being nice to humor you. Being nice to the weird one. The stupid one. You become suspicious and defensive. All the time.
My emotions are extreme and uncontrollable and explosive at times. I get frustrated and discouraged so easily. And you want to express all that, but you talk so fast and have so much trouble verbally articulating. Here, I see my words and can tell you exactly how it is. But talk to me to my face, and my verbal skills go down by 70%, and I find myself over explaining. Being unintentionally defensive.All of it stemming from complications that NF has brought into my life. It's a struggle to not let it own me. To break through the insecurities and difficulties NF brings and enjoy a productive and happy life, instead of always having that level of mistrust in the back of my head. "Don't let them know too much about you. It's only going to screw you over in the end". So, for years it's been a hidden aspect.
NF is my secret. It's the reason I am the way I am. It's not something I can cure or even manage. If I'm going to get a tumor, I'm going to get a tumor. If it decides to grow into massive disfigurements, and they are about 75% likely to be un-removable, that's just what's going to happen. No amount of wishing, hoping, exercise or healthy eating is going to change that. Nothing. Can I stress that enough? Nothing. It's a progressive disorder. I'd rather not know when it's going to hit me. Getting pregnant can exasperate the disorder. There's better things to worry about in life than worrying about something that might not even happen.
That's just what we have to deal with. At this moment in time, I say "If it's going to happen I'm going to deal with it when it happens." but if and when it actually does happen, I'm not sure how I'd feel. I have so many friends who either have NF themselves or have children with it. We all kind of feel the same way. Dealing with doctors, MRIs, symptoms. Wanting answers and solutions but
rarely never finding any.
NF is incredible. You can't control it, or treat it, or manage it. You have to mange life with it with pain pills and coping. It can either challenge you to accept it and embrace life, or to deny its existence.While I haven't "denied" it, I've kept quiet about it. If you didn't know about this before this post, don't take it personal.
May is NF Awareness Month. I'm kicking it off with this very personal post. Essentially giving away my secret; albeit it's mentioned on both my blogs. It's something so deeply personal. It has made me into this different person. Different. Not less
I hope those of you who don't know anyone with NF take some time this month to research it. But no amount of research can make the impact that talking to those with it can do. We can tell you of our spots. The tumors. The frustration. The feeling of hope and hopelessness. We're the only ones who can control our future, and our children's future where we may have a shot at finding a way to deal with this progressive, spastic, most common neurological disorder.
We have NF. But NF does not have us.