Wednesday, May 9, 2012

My Inspiration/Blessed

The amount of support I have received this week has been amazing. Another example of God's grace and faithfulness.
I think it's time to tell the story of my first Cervical Dystonia support group meeting. 
But let me back up.

As I wrote in a previous blog, I was unable to walk or move around for a good 3 weeks. When I was finally able to, I don't know what changed in me but I was unable to bring myself to watch tv, listen to music, go on the computer, etc.  I read and did homework. Everything else upset me. I think it was because I knew my life would never be the same and I would never be "normal" like the people on tv, like my peers on myspace (ha!) which was big at the time. One of my first mornings back to school my mom started hooting and hollering at me to come into her room as I was getting ready. I walked in there, looked up at the tv, and there sat Rogers Hartmann on the Today Show, talking about her battle with Cervical Dystonia. I was shocked. I did not know who this woman was, I had never heard of her, but here she was, with the Dystonia "tilt" of the head and torso, talking about the exact same thing that I was diagnosed with not even a month before. I was almost in tears. There's such a comfort in knowing that you are not alone in your pain. Sure I had support from family, friends, Taylor at the time-but no one understood, and out of respect for me, they did not pretend to understand what I was going through. 
Rogers Hartmann also appeared on Oprah. Her Cervical Dystonia is much more severe than mine and she is about 20 years older than me but our stories are more or less the same-woke up one day and had it. However, her brother did have Dystonia as well, and from what little we understood, it can be genetic. Luckily, mine is not, so if God ever graces with me children (I'll get to that painful story later) they won't be at risk from getting Dystonia through me. 
Rogers story on Oprah was amazing. They had attached a camera to this headband that she wore across her forehead so that we could see how she views the world with the degree of tilt her head is in. It's incredible that she has enough strength and courage to go out there and continue advocating despite her condition. She is what inspired me to start advocating and will always be someone I look up to.
I wrote her an email shortly after watching that show and was overwhelmed with emotion when she actually replied. It was a very short email but it made me feel powerful in my weakened state. It simply said, "You sound amazing! Where do you live?" Not much, but 4 years later I still remember it, so she had a profound impact on my life!

I encourage EVERYONE who takes the time to read this blog to click on this link or copy and paste it into the url bar and watch this video. This is Dystonia. This is the type that I have. It doesn't discriminate. It's a little disturbing for me to watch it, but this is Roger's reality and she has consciously made the decision to go out there and do something about.

And here is another one I found on YouTube. There is a reason this woman is one of my sources of strength and my dream is to meet her someday. Some of the things she says hits home for me more than I can explain.

"A wave of euphoria came over me once the diagnosis was official. And it was not from the relief of starting medical treatment. My first thought was, 'Why not me?' I'm the perfect person to get an orphan disorder because I will not shut up until the millions who have it are diagnosed, and receive proper treatment. All of my life's fears fell away without effort...Overall, my life's worries went somewhere else, and I have no interest in where they landed. I just know they do not reside within me any longer." -Rogers Hartmann

This is Rogers.

I lived about another year in what I can only describe as solitude. No one knew or understood my pain, despite the support. My mom finally found this AMAZING woman in Vacaville named Carol, who had started a Cervical Dystonia support group meeting inside her home, open to all who suffer from Dystonia.

I was so nervous the first time I went. I didn't know what to expect. I went with my mom, and when we reached the house and Carol opened the door, I saw behind her a small group of people-all of them much, much older than me. I think the youngest woman was in her late 30's. I walked in and they all looked from me to my mom, confused. Who has Dystonia? Me or my mom? When they found out I was the one, I think all of them but Carol (who already knew of my condition and my story) were shocked. They couldn't believe that I was so young and had this horrible disease. But they welcomed me and we all sat down and shared stories and pain and it felt like home. I was trying so hard not to break down but it was so overwhelming dealing with all the stupid ignorant people in high school, and then walking into a house full of people who understood the extent of the pain and agony without me really having to explain. They just knew. 
Of course it bothered me that they were all well over 50 years old-it makes me wonder how much time I have left. More incentive for me to start advocating now while I actually can. 

Carol became aware of this blog and asked my permission to share my blog internet address, as she would like to help get the word out about my story and blog. She said she is hoping that the National Organizations such as DMRF, NSTA, StDystonia, etc, become aware of it so they can refer other young people with Dystonia to check it out. 

I also received a message from the wonderful Kyle Porter who wants to help me start advocating. He said he researched Dystonia and like I have been saying, there is not much information out there on it. He designs and develops websites and makes videos, and he had the idea to make a fund where people can donate, with me being able to choose where the donation money would go. He said he would do it all for free.
It is people like this that are going to make a difference and keep me motivated. I have had a pretty rough week, but God is good and blessed with so many quiet whispers of "keep going." And it has been worth it. I'm hoping to get to work ASAP on creating a place where people can donate and continue on from there. Kyle you're amazing!

If anyone out there has any ideas on other things I can do to help get the word out, please feel free to message me via facebook or email me at

I'm not sure how far or wide this blog will go or who it will reach, but if it happens to reach someone suffering from Dystonia, hear this-you are not alone. You are not alone and I am putting my life, heart, and soul into advocating and raising funds for research. 

Thank you, again, to everyone and anyone who takes the time to read this. Thank you for the messages and encouraging words. I feel very blessed this week. 

1 more week of school and the advocating will take off to a new level-that is my goal. I feel like I finally know what I am meant to do. There is a purpose to my pain and that pain can be used for good. God is incredible if you allow him to be. He has shown me that I don't have to be a victim to my circumstances. I can beat this with faith. And no matter how small the victories, this week has shown me that I can make a difference. That, is absolutely amazing. Marching on...

Whatever you're doing inside of me
It feels like chaos
But somehow there's peace
It's hard to surrender to what I can't see
But I'm giving in to something heavenly

"The will of God will never take you where the grace of God will not protect you"


  1. Hey Nicole,

    Glad to be a part of your blog! I have had Cervical Dystonia for about 14 years, and am improving and coping over time. There is so much to learn and share about Cervical Dystonia, and your mission is a great step towards helping others.
    I'm glad you were were able to find a support group, which to me was what got me through the first tough years. It really is a life changing experience that is hard for people to understand.
    There is pain and suffering, I have learned to live with the pain, and have choosen to ignore the suffering. Don't fight it, be positive, as attitiude is everything. Good luck !


  2. Nicole,

    ich kann Brian nur zustimmen. Lebe mit der Dystonie so gut es geht. Suche Dir eine Selbsthilfegruppe oder gründe eine Selbsthilfegruppe. Es hilft sehr gut.

    I can only agree to Brian. Live with the dystonia so well it goes. Search to you a self-help group or founds a self-help group. It helps very well.

    Dear greetings


  3. Hi Nicole,

    My name is Sumaira and I live in Pakistan. My husband is diagnosed with Axial Dystonia three days ago. He is in a lot of pain and his posture had become very bad. It's devastating to know that he has to deal with it almost all life.
    Your courage shows a ray of hope for many like us.
    Hope you are still out there advocating for it.