Monday, September 15, 2014

Where Feet May Fail

I am...completely overwhelmed. September has been a crazy month for me thus far. I am absolutely determined to get this dang petition signed sealed and delivered...successfully.

I am not trying to be a downer in any way when I say this-but realistically, with where the numbers are at now, we won't make it. September won't be OFFICIALLY recognized by the White House at Dystonia Awareness Month. It is September 15th and we still need 87,288 signatures in about 15 days.

And that is ok. Here's why.

I started my advocating journey 2 years ago with this blog, not knowing where my words would take me. 
They landed me an article in the Dystonia Dialogue, I received the Douglas Kramer Young Advocacy Award in 2013 and was able to go to DC and advocate at Capitol Hill, and most recently CBS 13 did a story on me and Dystonia.  All of these experiences have been amazing but in true Nicole nature, it doesn't feel like enough. I'm not sure anything will feel like enough until a cure is found.

I recorded a video last week being openly candid about my situation for the first time ever, not knowing what would come of it. 530 shares later, my inbox is flooded and I am totally and completely overwhelmed. 

I was not comfortable recording a video and being so candid about my life. So much was going through my head and I almost backed out because as far as I'm concerned, people think I live a relatively normal life. They don't know I have Dystonia, because I don't look like I have Dystonia.
At times I feel like I am the wrong person to be a voice for the Dystonia community because I have what is considered a "mild" case and my physical appearance is not indicative  of what is happening inside my body. I am afraid of judgment. I am afraid that people will think I am exaggerating. I'm afraid people won't listen because I am not contorted, stuck, or obviously disabled. 
Then again, maybe that's why I am the perfect person to advocate-because I CAN. Physically, I am able, while other Dystonia sufferers are not. I don't really know.

But this is my calling, and I can't ignore that. 

Either way, I made a decision 2 years to start advocating for myself because if not me, then who? Only I can tell my story because I am living it. I can't put my life in anyone's hands but my own-and I urge everyone with Dystonia to think about doing the same. I love being a voice and an outlet but I am only one person and can only do so much.

So back to this video; like I said, openly talking about my life on camera is SOO out of my comfort zone-I can't even bring myself to take selfies. But you know what, there comes a point where you have to look at the big picture and just do it. People I went to school with saw it, family members saw it, and complete strangers saw it. And I KNOW God has a sense of humor because 24 hours later I had a local news crew in my living room with a camera in my face, so people saw that as well.

ha ha ha. 
I am so grateful that CBS 13 took the time to speak with me. Despite how uncomfortable I was, it got the word out. The word DYSTONIA was on the news. 


It is so much easier for me to express myself in writing, so I will say what I can't bring myself to say on camera. I will admit, I'm scared.

This past week of living, breathing, and talking about nothing else but Dystonia took it's toll on me and I had to go in for an "emergency" Botox Treatment. 


I'm overwhelmed by how many messages I have received from people with Dystonia. I am overwhelmed by the fact that almost every single individual story has no happy ending. Only "I've gotten worse." What a burden to carry. Honestly, it instills fear in me as much as it inspires to do more to advocate and speak out. 

I advertise doing nothing but keeping a positive attitude, but in a moment of honesty, let me say this to everyone suffering; WE ALL HAVE OUR MOMENTS.
And that's ok. HAVE THEM. Get mad. Get sad. Grieve for the life you could have had if Dystonia had not hit you. Pray, yell, scream, do whatever you have to do and give yourself permission to feel how you feel. 
But don't stay in that place. Since you can't do it physically, do it mentally. Get out and start naming all the things you can do. Be grateful for what you CAN do. I have literally made lists of all the things I can do and I swear it works. You'll be surprised by how long that list is.

I tend to fall into these pits of despair on days where I really feel...bad. Like I'm dying, or like I would rather be dead. For me, these days always pass but I get sucked into these surreal moments where everything is slowed down and all I can see is the hopelessness. I can see the life I could have had or should have had and my head gets stuck in this place of torment and pain and anger. 

I'm watching all my friends and peers get engaged, married, living healthy lives, and being that I am only 23...I will admit it gets to me. This pit I speak of is one of...nothing will change...my life has been put on hold and it won't move forward in the natural order of things...marriage..babies..sharing life with someone in sickness and in health...
When this "order" and all the expectations I had for my life is disrupted, it's life-changing, earth-shattering, absolutely devastating. 
Or amazing...my daughter is proof of that. Not the ideal situation, but I live and breathe for this little girl who didn't come in the natural order I envisioned for myself. I am blessed beyond belief by this girl and she makes me want to have a million more. (Don't worry, mom, I'll wait until there's a ring on it.)




My mom always makes comments to me about "When you have your next baby..." And I always make this sound in return, I'm ashamed to say it's not a positive sound, it's like a "HA. YEA right." And then I usually go into another room and cry. In the interest of being real and honest, this conversation was last night and my response to my mom was, "There are so many other women out there who A.) Don't have a baby and B.) Don't have Dystonia. That doesn't make me the most eligible bachelorette in town." 
OH MAN did I piss my mom off. 

And that is where the pit of despair STOPS. Why can't I get married? Have more kids? Travel? Enjoy my job and do it well? Am I really going to let Dystonia win?
Nope.
Not even a little bit.
When I'm having one of these "moments" I can only see the darkest parts of my life and it's such a narrow view I can't see anything else. I can't see myself through my mom's eyes. I can only pray someone will see me the way my family sees me and maybe even love me FOR the person Dystonia has made me, not DESPITE the Dystonia. 





For me, the most beautiful people in the world that I have met and spoken to are those who are living with adversity and trials and they find a way to overcome that and move forward. And I mean really move forward.
My friend Allison has a devastating disease and spends more time in the hospital than anyone I've met. She's also in the middle of planning her wedding and has the most AMAZING spirit. Talking to her is never a downer, despite how hard her life can be. And her fiance LOVES her so dang much it fills me with joy that she is so loved in the midst of all her trials.

My friends Chelsi, Catie, they both live with Dystonia but handle it with such grace, absolutely beautiful girls, I could go blind.
Melissa Phelps who is an amazing advocate for her two daughters who have Dystonia-I can't imagine what it must be like to watch your babies go through all that, but she advocates and pushes forward and lives with SUCH an amazing attitude...another beautiful soul.

The list goes on. When I see these people I don't see "damaged" or "broken" or "unlovable." All I see is remarkable strength that I admire and I can't think of a single reason these girls would be deemed unlovable. 

I've said this before and I will say it again: If something as devastating as this disorder can touch my life, why can't something AMAZING touch it as well? It doesn't have to be one or the other. I have found so much good in living with Dystonia and I am PROUD to be apart of the Dystonia community. You all are so incredibly strong, brave, and your capacity for human kindness is overwhelming. There is a special place in Heaven for all of my Dystonia friends, I'm sure of it.
This is so cliche but it's so true...let this make you better, not bitter. Easier said than done. I'm still working on that part but I know this has made me a better person, kinder, slower, more appreciative of the good in my life.






This petition...I am still praying by some miracle we hit our 100,000 mark. But if we don't this is why it's ok..
The 12,000 people that have signed are 12,000 people who have heard us. It means people are LISTENING. Even if it is on a small scale, it's something. 
To take that a step further, I know all it takes is one person going through what you're going through telling you YOU'RE NOT ALONE, to have a major impact on your life. Had I not seen Rogers Hartmann on my TV screen six years ago on Oprah talking about her life with Dystonia, I don't know where I would be. That is all it took for me to be impacted in a huge way, in a good way. So if this petition doesn't reach it's goal, I hope I've reached a handful of people. That fulfills my heart in a way nothing else can. 


I don't want this disorder to define me. I don't want pity. I don't want people to see me as broken, or damaged. I want them to see me and see ME. (And sign the damn petition.)

We still have a month to do this thing. It might take a miracle but I'm doing all I can to make it happen. 
Thank you to EVERYONE who has sent me messages, emails, support, love, kind words, the list goes on and on. I'm so incredibly appreciative that so many of you stopped and took a moment to listen. I love you all. I'm grateful for you all. Let's do this petition thing, ya?

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz







As always, I'm here if anyone needs to talk, or vent, or needs advice. Nicoledean2@gmail.com

7 comments:

  1. This comment has been removed by a blog administrator.

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  2. I would love to connect with you and your advocacy efforts. Although I am on disability because my symptoms are so bad, I really want to educate people about what cervical dystonia is. I tried by contacting major hospitals, Michael J. Fox's Foundation, and even doctor tv shows. I didn't hear back from any of them. I really think it will take star power to get the word out there, and since Michael has dystonia as a symptom of Parkinson's, he seems to be the obvious one who could help. I'd love for you to check out my blog at chronichopes.wordpress.com and send it to anyone else you know with CD. I don't know anyone else with dystonia and am looking for the support I need so I don't feel so alone.

    It sounds like you are doing a lot of great work!

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  3. Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

    ReplyDelete
  4. Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

    ReplyDelete
  5. Since September is Dystonia Awareness Month I want to make everyone aware of the program I have been successfully utilizing for over 4 years to help hundreds of dystonia sufferers, all over of the world, improve the quality of their lives. To read their inspiring stories go to www.dystoniahealthadvocate.com. I would greatly appreciate you sharing this valuable information during Dystonia Awareness Month.

    ReplyDelete
  6. As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

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  7. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

    ReplyDelete