I Didn't Know There Was Anything Wrong With You.

 

I was talking to my manager about my family, specifically why we have all these doctor visits that include MRI's, blood draws, vision checks....

I wasn't asking for time off for these appointments... but he was curious, because I talk a lot about being at the doctors with my kids..."Are they sick?" he asked me.

Well.  Technically NO.  They aren't "sick".  

He is the same manager who found my keynote speech in the office, read it and spend some time googling me and Neurofibromatosis...So he was completely receptive.

But as I explained NF in more detail, he just looked more confused.

He said to me...."I didn't know there was anything wrong with you...."

This rubbed me the wrong way. It didn't make me ANGRY, but it ANNOYED me enough that I took a few moments to responded to him...."Having NF doesn't mean there is anything WRONG with me.  It just makes me different.  I deal with things that you don't have to.....But at the same time...YOU deal with things that I don't have to deal with."

The old saying is 'we all have our crosses to bear'. For some people, the worst thing they deal with from day to day is getting cut off in traffic, or spilling coffee on their blouse. For others, it's a fender bender, or not enough money at the end of the month. For those with NF, our perspective tends to be broadened to include what the world might consider 'tornado-level' results - tumors, chemo, deformations, and more.

But people who don't have NF have their own stuff, and to them it can be just as bad. In some cases, it IS just as bad. In some cases, it's WORSE. Disease and Death touch us all.

It doesn't mean anything is 'wrong' with us. It just means that this is our life.

  Saying something is 'wrong' with us is the world's way to label us, to label anyone too different, really. To compartmentalize us, so they don't have to think about it - they can dismiss us by just saying something is 'wrong' with us.

But they can only succeed in doing that if we allow it - if we shrink into those compartments, instead of living the lives we deserve, and being the people we want to be. 

NF is just PART of my life.  Yes, it intertwines with everything I do, and everything I am...Yet it isn't the thing that defines me.

Don't let it define YOU.

Thrive on.

Why Did God Make Me Ugly?

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.

THRIVE ON-

Am I Making A Difference?

It's hard to believe that 2 weeks have gone by since I was in Canada.  It was such a heartwarming experience...And I find myself longing for more.

While I was at the symposium I had this woman come up to me, shake my hand and tell me how much she liked my talk.  She pointed to her daughter - who was sitting by herself, with her baby.  "Can you go over and talk to her...?"

So I did.  I sat with her.  Told her that her baby was beautiful...That NF wasn't the end of the world...That her baby is looking to HER ..And that to HIM...She was his hero!  

I tried.

But....I don't think any of my words helped.  

To HER....This was the end of the world.  To HER, her baby was 'sick'.  To HER, it was all her fault.

I felt bad for her....Mostly because I know exactly how she feels.

I hate NF with so much passion, that sometimes, I just want to throw my computer against the wall, and give up on all this THRIVING crap.

But...

Then I see my kids.  I see them looking at me.  To MY kids...I am their hero.  The one they look to - and learn from.  I see MY attitude reflecting in them.  And THRIVING has become the most important part in how we cope with this diagnosis.

My words may not have impacted this young woman....But....Maybe they did.  All I can do, is set an example....Share my story and live my life.

And on those days where I get so frustrated that I want to give up.....I DON'T.

THRIVE ON.

Speaking!!!

I am still coming off my high, from the amazing weekend I had!  I just can't get enough of this stuff! Sometimes I wish, I could just clear my schedule, and do this full-time!

WAIT....

Why can't I...?

I get so pumped up when I am able to share my story with people....AND have my story actually have an impact!  It's an amazing feeling when someone comes up to you, after you do something like this, and have THEM QUOTE YOU!

Words matter.  And I am so blessed to have people who want to hear what I have to say.

It's quite humbling!

My journey in THRIVING with NF....Has been a long, hard, sometimes even painful road....But at the same time, it has been triumphant and satisfying!

I wanted to THANK Desire'e and the entire BCNF group for having me out to your symposium.  I am blessed to have been able to speak and humbled by the response!


I am READY for MORE!

THRIVE ON!

Vancouver, I Can't Wait to Meet You

I'm so excited!  In a few days, I will be in Vancouver British Columbia!

I have been invited to share my story about how Neurofibromatosis affects my life, as well as the lives of my children....And how we THRIVE throughout the many UPS and DOWNS of this disorder!

What does THRIVING look like?  I get questions like this all the time.  And my simple answer is this....THRIVING means taking control over your actions.  We all get angry...frustrated....sad...ETC....
But what happens after that...?

Thriving for ME....means I use that energy for something GOOD.  Something POSITIVE.

Try it.

I know it's hard to be positive all the time, when faced with the problems of such a complicated disorder...But, it's not about being positive all the time....It just about changing the way you respond....Changing the way you let things affect you.

This will change the way you are treated...I promise you!

If you act like a victim...You will be treated like a victim.

I don't always have it 'all together'...I have days where I shake my fists at God....But, then...I bounce back and realize my attitude and actions are MY RESPONSIBILITY!

Let's THRIVE together!