Friday, April 15, 2016
I was emailed a question a couple weeks ago from a woman suffering an extreme form of Neurofibromatosis. Attached was a photo. In the e-mail she asks the question..."Why did God make me ugly?"
How do you define UGLINESS? For me, when I think of that word, it doesn't have anything to do with appearances. Ugliness is an action. Same goes for the word BEAUTIFUL.
When I looked at this woman's photo, I didn't see ugliness. I saw strength. But I definitely connected with how she feels.
She asked me questions about how I feel about having NF...And if my love life has suffered.
"My husband doesn't love me anymore. And I find myself pushing him into an affair....Maybe then he will be happy."
My heart broke for this woman, and I have been struggling with how to respond to her....which probably also can explain my hiatus from blogging.
I tend to run from things that make me uncomfortable...And NF, despite my show of bravery on-line...Does make me uncomfortable to talk about.
It's mostly because people just don't get it. To them, tumors mean cancer....Cancer means sick...Sick means death....And death means sympathy....Sympathy means pity etc etc etc....
NF is not something that can be talked about casually. It's complicated, and goes beyond, 'bumps on the skin'.
The thing is I find myself asking God 'why' a lot. Why do I have to deal with this? Is this a form of punishment? Why do I have to be strong? Why won't God just wiped this disorder away?
My NF 'isn't THAT bad' right now....But what's going to happen in 5 yrs? 10? 20? Will my "THRIVING" turn into frustration, anger and bitterness? Will I be asking if I am still worthy of love?
Honestly I am scared to death of this happening.
But for now...I am trying to build myself up to be strong. Build up the people who are around me to not judge...But instead LEARN.
I hate that the woman who emailed feels ugly...And feels like her husband doesn't love her. My advice is to sit down and talk about this. People fear what they don't understand....And maybe its just that the husband is scared. So he pushes away.
It's easy to run. It's hard to face reality. It's hard to teach. But in all those things that hard...When we face them....We grow. And we can grow to love ourselves....Once we love ourselves....Others can start to love us.