Thursday, November 21, 2013

"Behind The Scenes"~Francesca Battistelli

If you know me, you know I'm a positive person.  I'm happy the majority of the time.  I hate to cry.  I hate to get angry.  Life is too short to be miserable.  I love to goof off, laugh, dance like no one is watching.  I like to make people laugh.  I take life as it comes and keep going.  I don't mind embarrassing myself.  My outer shell is someone completely different than what is fully inside.  I don't show my struggles very often.  I'm an emotional person but only to those really close to me.  I have a good front.  I'm good at faking it all when I have to.
Everyday I'm making strides to fight this MdDS stuff.  It feels good to talk to people about it.  Spread the issue and what it involves.  Teaching those who have never heard of it and what it does to a person and their life. 
I struggle on a daily basis to at least appear "normal."  "Normal" in the sense that I don't want to look crazy walking.  I don't want to be confused with normal tasks.  I don't want to be frustrated, upset, or even lose my hope when it comes to living my new life.  People ask me all the time "How do you cope?" "How do you stay positive?" "How do you live?"  The answers are simple.  I have faith.  I have hope.  I have an inner strength that I never knew I had and I can share that new found strength with those around me.  I have days that I don't cope.  I have days that I'm not positive.  I have days where I feel I'm not living like I want. BUT I've always been a fighter.  I come from women who were/are fighters.  I struggle on a daily basis.  I fight on a daily basis.  But this is my life.  
I have had many struggles that I have had to deal with in life and with those I always had a happy smile on my face. I had to, mainly to protect myself, my family.  I stay in a good mood around everyone.  I don't show my struggles to most people.  I am a great actor to pretend that everything is fine.  So even when I look like I'm positive, I'm not.  Those closest to me can see the difference.  They know when they are looking at a facade.  They can look deeper and see that I hurt.   The old me is no longer and I've had to learn how to live with the new me.  The new me that struggles to find hope, strength, courage to keep moving forward. 
So what goes on behind the scenes?  Every morning I wake up and look around to see what is moving.  I tell myself, today is another day that I must fight.  I get up, get dressed (sometimes this will take awhile), get my kids ready and start my day in the outside world.  I have to watch my steps literally.  Is the ground flat today or is it warped?  The wall is standing straight up and has been in the same place since the building was built.  Remember to turn the faucet more to the cold setting just to make sure you don't burn your hands with hot water.  Check and double check where a cup is compared to the drink I'm pouring.  Hold onto an object until you are certain it is on a desk or shelf.  That person is sitting in front of you, they aren't moving.  I feel a hand on my back from Josh or Jake or mom, that means I'm rocking too much and need to focus on stopping.  There are kids in this room that are moving fast which means I need to move slower so that I don't trip and fall and hurt someone.  Watch for the corners, they cause major bruises on your shoulders so don't hit it.  My hands run down walls or reach out for corners so that I don't hit something I'm not supposed too.  There's tile in this room, don't look at it...so what can I focus on then?  These are just a few things that I have to deal with on a daily basis.  This isn't everything.  It doesn't even tip the iceberg and its a huge iceberg.  
So why put on a front?  I hate pity.  I hate someone being sorry for me.  I don't tell people my story for that reason.  I tell them so they learn what it is.  More awareness is a good thing, right?  I refuse to feel sorry for myself, so why should you feel that way for me? I know its a way for people to show they care, and not to be offensive, but it drives me bonkers! I don't want to feel bad, so I try not to.  That saying "it takes more muscles to frown than to smile,"  well I'm using too many brain muscles with everything else to sit there and get upset and be that way everyday.  Its too exhausting.  I've also found the more positive I am, the better I feel.  I'll keep my behind the scenes moments for me and enjoy the other parts of my life with those around me.  I don't have time to dwell on the misery of it all. It took me a really long time to come to this point.  I'm terrified everyday that I will wake up and be back to square one, but at the same time have hope that I will wake one morning and it will all be gone. 
Although I fight everyday to walk normal, focus on minor details, remind myself that the world isn't moving the way my brain thinks that it is, I don't make it my priority.  There are more important things in my life than letting this take me over.  I won't go back to day one because day one was scary.  I won't go back to week 1, because the frustration was taking over.  I won't go back to month 1 because I let the disorder take over who I was.  I won't go back to year 1 because that day I lost my hope.  I will live for today.  For my life and the strides that I have made.  I will keep putting on my happy face, because again, its easier for me.  "When it’s hard to find hope in the unseen, I have peace in knowing it will find me"

 

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