Thursday, September 29, 2016

Did You Kiss A Toad?

So, I have stayed relatively quiet here for the last few months.  But today, after hearing about this episode of Scream Queens, it spurred some inspiration.

Overall....I think the episode did what it set out to do.  (I am NOT saying it did a good job)

Aside from the ..."He looks like the inside of a hemorrhoid"....Or the continuous reference to this man as a "monster"...I was impressed with Scream Queens in how they showed the deep emotional struggles of what it's like living with Neurofibromatosis.

The scene in the diner, is what made me get up and open my computer to write this blog post.   I kept screaming at my tv, while watching....

Media...You are one of the most...If not THE MOST powerful tool in educating the public.  And when you blow it...Be prepared for the ultimate backlash.


You referred to the man in this episode as a MONSTER at least 7 times.   This is completely ignorant and mean.  It's no wonder - people with NF don't want to go out in public.  

I am so sick of this bully mentality - People will never change...Especially when we are being shown how to react to people who are different. 


BOILS?  WARTS?   NO!  These are NEUROFIBROMAS.  If you are going to represent a REAL DISORDER....Then REPRESENT REAL FACTS.  Don't mock it or make light of it.

While talking about your patient...You indicated how his life 'must be a mess'....and 'How could he ever find love'....

Seriously.  Well I wasn't a fan of your show anyway....And for SURE won't be tuning into any further shows now.

Let me also say this....At the end, when when our NF1 guy 'almost' gets the kiss....You were right...Looks don't matter...But the damage was already done, as you mocked, ridiculed and ultimately misrepresented THE MOST COMMON GENETIC DISORDER in human beings...

But, hey....You are all about Ratings.  Entertainment.  And MONEY.  What can we expect?

For now...I'm thanking you FOX...for getting me out of my Writers Block.

#thriveon  #Ifoundlove  #amnotamonster

Wednesday, August 3, 2016

Lesson Learned

In 'every day life', my NF stays relatively quiet.  I go about my day just trying to survive the craziness.  I wake up, go to work...come home, spend time with the family...Go to bed, and begin again.

Good days...Bad days....I just take them as they come.

My brother has been dead for a month now...And I still don't know how to accept it.  I'll put on a strong face, but inside I am so sad.  So angry.

I hate that life just continues on, like nothing happened.

Because something DID happen.  The world lost a beautiful person....And it's just not fair!

I know you have probably heard it a ZILLION times....That life is precious and that we should cherish the time we have with the ones we love....And I did.  I cherished Mikey.  He was my best buddy...And I know without a doubt, he knew he was loved by everyone who knew him.....

Which just makes losing him more difficult.

Mike knew he had NF.  He knew he was 90% blind and 50% deaf....He knew he tumors and  a shunt. But he didn't care.  He never let those things be an excuse.

He went out into the world and made people happy.  He wasn't about "stuff" or money.

He just LOVED.  God I wish more people were like him.

Life gives us a fleeting moment to make an impact...And Mikey did that.  I am so proud to have been his sister.  So proud to have learned from him.  So proud to have no regrets when it comes to my relationship with him.


Monday, July 18, 2016

Rest in Peace Mikey

I miss you - Mikey.  Growing up, you and I were inseparable.  I didn't really know much about you, until after mom and dad divorced.

I knew you were sick.  But you always showed strength....To the point, we both forgot about Neurofibromatosis.

You were my buddy.  My best friend.

I will always remember our adventures as 'Bonnie and Clyde'....And the way you took care of me and always made me feel safe.  I hope I did that for you as well. 

You are still in my heart and dance in my mind-
Completely healed and no longer blind.

You courage and strength, Shined so bright-
You earned your wings, and have taken flight.

The tears I have cried,
You've wiped them away-
You hold me close- as you softly say-

"I am free from this world-
My pain is gone-
And if given the choice-
I wouldn't live on."

"This place is awesome-
And you'll be all right-"

"I'll look after you from Heaven's height."

I love you Mikey.

Saturday, June 18, 2016

Thriving Takes Action

As a human being, it's easy to focus on the negative things in life.  I mean let's face it, life is HARD! And sometimes, life is unfair.

I didn't grow up as an overly optimistic person.  In fact, there are times when I think I am hard-wired to be a frustrated- angry woman....Just like my mother.  (There are even times, when I actually think, that way of life would be easier)

I have to work HARD....REALLY HARD sometimes to push out all of the negative - toxic feelings I have.

I got this e-mail from a father, who is having a very difficult time accepting the diagnosis of NF for his 3 yr old son.  He's angry (I understand) And he can't see the good in anything right now.  His words "I feel hopeless".

I feel this way too.  I sink into despair.  The amount of guilt I feel sometimes, when it comes to NF is unbearable.

But then what...What do I do with all those emotions?  Where do they go?

Those emotions - ALL OF THEM - are inside of me.  They are real.

But they transform into the energy I need to push myself forward, instead of allowing them to swallow me into a pit I cannot get out of.

HOW?  It's a very deliberate effort.  I recognize what it feels like....And what it looks like when life's "Stuff" starts to take its toll....And I know that everyone around can feel and see it too.  So...I make a choice.

It's like that saying-
"Whenever you do a thing, act as if all the world were watching". Thomas Jefferson

Positive thinking engages ALL me.  It puts ME in the drivers seat.  Puts ME in control of MY life.  And when other people notice - and recognize my efforts, it just makes the NEXT time I am facing a difficult situation, a little easier.

"THRIVING Takes ACTION-  When you CHOOSE to TAKE ACTION...Instead of letting life act upon YOU....That's when you THRIVE!" - Kristi Hopkins


Wednesday, May 18, 2016

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.