Monday, December 14, 2015
Connecting NF Style
You know how when you are driving around....And you spot someone on the road driving the same kind of car you are in...? You take that extra time to check the other car out....Maybe even smile and wave to driver...Like you know...you have some sort of connection with them....Even though you are complete strangers. :)
Well...This kid started working at the theater I work at, and I did that..."Hey, something about him is familiar..." I just started noticing that he and I had something in common.
It's weird. When you meet a total stranger, who has the same condition as you. It's a crazy feeling that is hard to explain. It's like you are friends, before you even speak.
This kid, is 18 years old....Has Scoliosis (an obvious curvature), slightly bigger head, deep set eyes...And cafe au laits spots on his arms....Which were what prompted a conversation about Neurofibromatosis.
I feel sad for this boy...He tells me that he has no one to talk to about what he is going through. He is the only one in his family who has NF....And his parents are in denial and refuse to take him to the doctor.
We were on break together...And he had his head on the table. I asked him if he was okay, and he tells me that he gets really bad headaches.
"Is this normal...?" he asks.
My motherly instincts kick in and I slide my chair over to him. I told him about my headaches...and that he needs to communicate to his parents about this.
He has never had an MRI....And he asks me what they are like....And we spend the rest of our break talking about tumors and headaches.
Part of me whats to hunt down his parents, and shake them...and MAKE them care! I understand being scared and not wanting to deal with this. I get the thought of wanting to shove this in the corner and and ignore it.
That's what my parents did.
I get the fear and guilt. But fear and guilt do NOTHING but make things worse. Especially when you are using them as excuses.
The other day this boy and I are passing each other at the time clock...He told me that he told his mom that he met a lady at work who also has NF....He went on to say that him and his mom are going to the doctor next week to talk about his headaches.
I was so happy!
He said THANK YOU to me......"For what...?" I asked.
He said...."For talking about NF and not being afraid....For helping me not be afraid...And maybe...for helping my mom not be afraid...."
This folks, is what it's all about--
THRIVING WITH NEUROFIBROMATOSIS!
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Hi
ReplyDeleteJust found your blog and must say I really like and apprieciate your work. Generally I avoid Googling for this issue as it only makes me sad and quite funny it is when I feel bad and sad that I tend to Google for it. Not very rational. :p
I was born with NF1 without any of my parents having the condition or any known historyn of it in the family, Was lucky enough to have febrile seizures in my childhood and at this one time I ended up at the hospital where they at the same time. Very early, around age 7 or 8 I started chemo.
Due to the treatment I missed a lot in school and was weaker than the other kids and a hard time keeping up in their tempoö. I was given a lot of extra help and even had to go to extra PE. Already there I guess I always knew something was wrong with me, but I am not sure. My parents did not talk a lot about this with me.
At age 13 my port au cait through which I had recieved my chemo was removed and I thought this meant I was "normal" now. My parents continued being very silent about my condition and it was not until after a check-up when I was 15 that I heard the name of disease and when I came home I did some research and found out my condition was a little worse than I thought. Ever since that moment I have had very poor self-esteem especially in the field of "fining a girlfriend".
To some extent I can understand my- and other in the same situation- parents for not talking to me about this when I was little, but I really wish they would have had the talk when I was a little older at least. They just kept quiet as if everything was normal making me think I was 100% healthy.
Anyways, since I was lucky enough to get diagnosed and treat in such early age I have been able to live a normal life. Today I am studying at University and no one has ever suspected I have a medical condition. The only way I am suffering in is that I have distorted vision that cannot be fully fixed even with glasses. Thus I cannot have a drivers license, but today there are a lot of "normal" people with glasses too and "normal! people without a license so.
This far I have not met anyone with NF...Not that I know of at least.