Monday, April 15, 2013

Bloom Where Ever You Are Planted

Where do I start? 

I started this blog last year for a couple different reasons. I was mad that Dystonia was not listed as one of the MANY neurological movement disorders being taught in my biological psychology class. I had a guy compare my life, my problems, my Dystonia to the pile of papers on his desk that he just didn't want to deal with. And mostly I was sick of pretending that I am a normal girl, I live a normal 20-something life, and that I was just like everybody else. 
That couldn't be further from the truth though, and I think the greatest disservice anyone can do to themselves is pretend to be something they're not and be ashamed of something they have no control over. It was my "coming out" of the Dystonia closet.
A couple years ago I discovered something called Advocacy Day in Washington, D.C. It is the Dystonia communities' chance to talk to legislature and try to raise awareness and funding on the Federal and State level.
Kind of a big deal.
I didn't know where this blog would take me when I first started. I would have been happy if I reached just one person. As usual though, God has opened doors for me that I didn't even know I wanted open. I received an email from my mom in March, the subject line containing a very simple "DO IT DO IT DO IT!" She was urging me to apply for the Douglas Kramer Young Advocacy Award, which would allow me to attend Advocacy Day in D.C. 
I filled the application out which contained a series of questions; How does Dystonia affect my life, What I have done to continue advocacy, What is my experience with Dystonia, etc. I wrote from the heart and pressed send, not thinking I would actually get picked.
Surprise! God had other plans for me, clearly. I still can't believe it and this is beyond my wildest dreams; a chance to not only advocate but meet people who are fighting the same fight as I am. Such an opportunity! 
I've been going over in my head what I might say. Which has brought me back to what I fear most about my disorder.






This is what I know for sure, these are facts that have been given to me.
Fact: There is no cure for Dystonia.
Fact: It is progressive. Eventually, I will be immune to the Botox treatment I receive.
Fact: Deep Brain Stimulation would be the next step.
Fact: DBS is not a cure.
Fact: In order to get pregnant and carry a child, I have to stop ALL forms of treatment and will be limited to taking only Tylenol. 
Fact: Without treatment, my head contorts (painfully) to the left and I have tremors, leaving me in excruciating, terrifying pain.
Fact: I have talked to mothers who have Dystonia and carried a child and they all warn me it is NOT an easy thing to do.
Fact: My future is uncertain.
Fact: I'm scared.
Fact: WE NEED A CURE AND WE NEED FUNDING FOR RESEARCH AND WE NEED PEOPLE TO UNDERSTAND THIS.





I just want to have a chance at HOPE for a cure. I have faith in God and that has carried me this far, and will continue to carry me. I just want hope that I will have a better future than the factual one laid out for me. I want to represent the young friends I have made who are also suffering with Dystonia. I don't understand what the older Dystonia community goes through, but I know what it is like to be in your prime and have Dystonia; it wears you down, makes you feel SO much older than you actually are. I am representing these young friends and I hope I do it well. 

It started with this blog.
I started connecting with other Dystonia sufferers.
I reached out to the Dystonia Medical Research Foundation.
I got to write an article for the Dystonia Dialogue.
I applied for the Douglas Kramer Young Advocacy Award and got it.
I'm going to D.C. to lay my heart out on the table.
This is my dream.
I am blessed.
It started with a blog.




Don't give up. 
Sometimes the small decisions lead to bigger things.
God is funny that way, isn't he? 



As always, if anyone suffering needs a friend, or if a young Dystonia sufferer wants me to bring something up for Advocacy Day, I am here. I'm not going anywhere. I'm not giving up. You shouldn't either.



There are moments that mark your life,
moments when you realize nothing will ever be the same,
and time is divided into two parts:
before this and after this. 


4 comments:

  1. Hello!!! Kudos to you!!! Dystonia Advocacy is such an important platform. I have General Paroxysmal Dystonia and blog about my journey with Dystonia. I think my blog post about Dystonia and pregnancy can be encouraging to you!! http://questofthenocturnalbaker.blogspot.com/2013/04/pregnant-with-dystonia-birth-story.html

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  2. I recommend you check out the Dystonia Health Advocate at http://www.dystoniahealthadvocate.com.

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  3. I have cervical dystonia too but lately, I have muscle spasms all over my body. Sometimes they are whole body ones and I can't move my arms or legs because I'm in a fetal position. Maybe it's progressing to generalized dystonia? My muscles feel like they are "tearing from the bones". My Rheumo doctors keep telling me that it's fibromyalgia, but the spasms do better with the Ativan than the muscle relaxers. I was wondering if your muscles ever feel like they are "tearing from the bone"?

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  4. Way to go! I have Dopa Responsive Dystiona and am 33. I was misdiagnosed the first 33 years of my life with Spastic Diplegia. I kind of get the sense that we see things similarly. God does have a plan for us and it's our job to follow through with it!

    rainydayfriend.blogspot.com

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