Sunday, July 22, 2012

From The Inside Out

Sometimes, someone can tell you something a million times and although you agree, you don't fully get it until you realize you never fully got it. 
Got it?
That was probably very confusing, I know. I have been saying for years now, Dystonia does not define who I am. And I am slowly starting to see what that REALLY means. 
It means that God has plans for me, good plans, and wants only my love and devotion to him.
The things He gives to me are things I do not deserve but are beyond my wildest dreams. I am incredibly blessed to love a God that loves me first, despite my shortcomings.
It means that I can meet someone and somehow, through the grace of God, they can see my heart, not the things that complicate my life. Just me. And what I am about. And I suddenly don't feel the need to talk about my Dystonia, there is just an unspoken peace that truly, it's okay. And it's going to be okay. And I'm so glad I did not give up.

I have never directly addressed my faith in this blog, mainly because I understand that everyone has different beliefs, and I want this to be a safe place for Dystonia sufferers' to come and be reassured, you are not alone in your pain. But God is my safe place. People often comment that I have handled this reality very well, and I can honestly say it's the peace I get from knowing that God has my life and loves me, He will not let me fall without helping me back up. 
So when I say Dystonia does not define my life, I finally understand that God does. All it takes is letting go of the fear and the selfishness and the anxieties that this disease causes-will I be crippled? Will I get better? Will I get worse? Will a man ever love me beyond the complications of this disorder? 
No matter what the answers to any of these questions are, the minute I let go and stop all this needless WORRYING, I suddenly realize that I have no control over these things, and that is okay with me! My body will surely fail, just as everyone else's eventually does. But to walk through my life, in this body, with grace and a peace about it all is something I encourage not just Dystonia sufferers' to do, but everyone. I hope I do not offend anybody out there, I respect that we all have different beliefs, this just happens to be mine.
This is where I get the strength to keep going, to keep living my life with the child-like hope that God has some amazing plans in store for me. They are unfolding in a way that I can hardly fathom-and suddenly I realize how much God loves me. He WANTS me to have all the things my heart desires-to be a wife, a mom, have a family, help people, write with an unfailing passion, and most important, live my life through Him. Be an example to people out there who are lost. I've been in some dark places in my life, especially with this disorder. But guess what-there is always a light at the end of every dark place, if only you allow your heart and mind to go to that light-turn away from your worries and your feelings of despair. Find a purpose to the pain. Find that purpose and turn it into something wonderful.

I know us Dystonia-sufferers' out there have good and bad days-some REALLY bad. Like curl up in a ball and cry bad. I know there are people with physical and mental symptoms that have no cure. 
Don't be mistaken-I don't have it all figured out, but I do know this-God is looking out for every single person out there suffering, He loves you and He will always love you. Suffering or no suffering, find a reason to go on and not let this break your spirit. I know it can. But don't believe the lies. You are good enough, you are beautiful, find that beauty in the parts of you that feel broken.
This is my advice, this is the foundation of my life and I am so inspired by some of the things I have felt and experienced this past week. I finally understand-everybody is God's somebody, including me. I am undeserving and I make mistakes but God loves me enough to help me find a purpose to this pain I live with and then bless me with more than I ever prayed for. God is just THAT good. 

For the 20/30 Dystonia Facebook Group members-I read every single person's post and I can almost hear the desperation and pain through the words. I understand all of it. So I encourage all of you to not be discouraged! YOU ARE NOT ALONE. You have something so beautiful looking out for your life, broken or not broken, Dystonia or no Dystonia. You all are so wonderful, you all inspire me to keep writing, to keep being an outlet to this community of wonderful people who just happen to suffer from this strange disorder. 
But I promise you-you are more than the pain. It's the heart that matters. 

As always, if anyone out there needs a friend to talk you, especially my Dystonia friends, I am here! I'll be here; I'm not going anywhere.

"Write as if you were dying. At the same time, assume you write for an audience consisting solely of terminal patients. That is, after all, the case." -Annie Dillard

"I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way than this: where I does not exist, nor you, so close that your hand on my chest is my hand, so close that your eyes close as I fall asleep."
Pablo Neruda

Thursday, July 12, 2012

Sticks and Stones

Another horror dating story and a complete lack of respect for what I go through.
A guy I had been sort of seeing has accused me of "using my Dystonia to get attention" and he also said that he "sees what type of person I am now" and that the pills I have to take for this disorder have "permanently affected my brain so I am now unable to comprehend things."
I talk about Dystonia because first of all, I'm advocating for it. OF COURSE I'M GOING TO BE TALKING ABOUT IT. Second of all, if I'm seeing someone, it's going to come up every once in a while. You know? Like hey, I just got Botox a week ago and can't hold my head up, can you please lift the ice cooler for me, honey?
I talk about Dystonia because I am trying to reach out to those who need to know they are not alone.
I go through what I go through because God decided I was strong enough to do this. To live with this. To suffer every day with this. And I feel like I've been doing an OK job so far at wrapping my head around this reality and living as normal a life as possible.

You know when you're kid and you're programmed to say 'sticks and stones may break my bones but words will never hurt me?' 
How wrong those words are.
It's amazing how significant one insult, one accusation, one ignorant comment, can leave such a scar on the heart. 
Why would I ever use something that tortures me for attention? When people ask about my Dystonia and I tell them, whenever people reply with puppy dog eyes and a "Oh gosh I'm sooo sorry," the first thing I say is PLEASE DON'T BE.

I don't want anyone EVER to feel bad for me. Or to pity me. There is a difference between having compassion and respect for someone else's pain and pitying someone, and I never want anyone to feel bad for me. This has shaped my life in such a powerful way. I will repeat this until I die, God works remarkable good out of unspeakable tragedies. Honestly, I get a little freaked out thinking about who I would be or what I would be like if this hadn't happened to me. I could have turned out to be a raging alcoholic or a complete party animal who gets knocked up too young. I don't care to know that person, and I'm grateful I would never have to.
I know who I am. I know my heart. And being accused of USING this offended me SO much, my jaw dropped. My heart started racing. I yelled at someone for the first time in a while. Like, really yelled. 
I'm trying to take something bad and scary and show people that you CAN overcome your circumstances and see the good in life through the storm. I would never use this to get a leg up or to my advantage somehow. What a horrible accusation. How offensive. My response to him was..
"I wish we could switch bodies for a day and you could physically feel what I go through, and then see how you would feel if someone said they think you use your suffering for attention."
Had no effect on him whatsoever.

What is wrong with people? Our world is so fallen. Obviously, this guy is NOT my prince charming. It did make me question myself though. I really hope that I do not come across in a way that is not reflective of what is in my heart.
I'm here to reach out to people. To inspire. To let other Dystonia sufferers out there know that they are NOT alone. I'm here, I'm young, I'm motivated, and I am not going ANYWHERE anytime soon. As long as I'm breathing I will be fighting against letting this ruin my spirit and my heart. God never gives you more than you can handle. I have been so discouraged lately, I won't lie. But ironically, this guys ignorant and inaccurate perception of me snapped me out of the funk and the writer's block and just affirmed who I really am. 
Come on, Nicole, you're better than that! Surely God wants more for me than that. 

What a crazy journey. When the first guy I mentioned in this blog said that if I was healthy, things would be different, it affected me so much, and I'm ashamed to say I let it. Every person, young or old, sick or healthy, rich or poor, deserves so much more than these comments. Gaining a selfish advantage by using my disorder in some way is not in my heart. It is not in any fiber of my being. I wouldn't trade anything in this world to make things different. This has made me who I am. I have not been feeling good physically lately but the fact that I am able to say I would rather suffer and know my heart than be healthy and not have a damn clue, how is that anything short of God working in me? I just want to be an outlet for people, a safe place to go to, a light in a really dark place.
I have said this in previous blogs, I am not just fighting for myself. I am fighting for thousands of people out there who are hurting. People are suffering, people are scared, people's lives and the quality of those lives are at stake! So shame on the guy that accused me of USING this to get attention. Shame on him. 

Another failed prince charming. He ended up being another frog. A frog I am grateful for though. He thought his words would affect me; sorry bro, you just strengthened my heart and the confidence I have in what I'm doing here. So thanks!

I'll know when my prince charming arrives, but I'm done searching. Dystonia does not define who I am, but it is a PART of who I am. If someone is going to love me, they have to love the Dystonia. I know I do. Otherwise, who knows? I might have married that ignorant frog if I did not have this disorder to show me who he really was. 
Dystonia: 1
Ignorant Frog: 0

You lose. I'm still here. And I'm not stopping. 

"If a train doesn't stop at your station, then it's not your train." -Unknown