Tuesday, February 11, 2014

We Can't Stop

Ahhh, we meet again. I can honestly say I have been at a complete loss for words for almost a year now. I recently checked back into this blog for the first time in months and was shocked to find that it is still getting thousands of views. I have also continued receiving an influx of emails from people all across the country, some even from different countries, sharing their stories and encouraging me to keep blogging.

Welp, definitely failed in that "keep at it" aspect. I have also received many congratulations on meeting a wonderful man who supports me and all the complicated faucets of living with this disorder...well you all can please stop because I snapped out of my temporary state of insanity and broke up with him. I don't need to go into details because I don't want to bash the father of my child (yes, I have a CHILD...I still don't believe it).
Anyways, to sum up a very long, painful story, my wedding was paid for, dress fitted, found out we were pregnant in April, realized I was about to marry someone I was absolutely not in love with and who was a pretty awful person around June, broke off my engagement and made the decision to be a single mom, and went into a full-blown remission from Dystonia due to the pregnancy. Doctors don't know why this happens but it's almost like the body and the brain recognize that the body has a precious life to protect and nurture and gives the brain a break from the horrors of Dystonia.

It was an amazing 9 months of being Dystonia free but also a very lonely, confusing, and long pregnancy due to the OH MY GOD IM GOING TO BE A SINGLE MOM factor.
I can't even put into words what it's like living with Dystonia for 5 years, fighting every single day for my life and then all of a sudden...POOF. Gone. Symptoms gone. Contorting gone. Pain gone. I haven't received Botox treatment since last March. Absolutely incredible feeling. I was warned by my neurologist though, eventually the Dystonia WILL come back. We won't know when, we won't know how it will manifest itself, but it WILL come back BECAUSE THERE IS NO CURE.

I gave birth to a beautiful, healthy, happy baby girl I named Everleigh New Year's Eve and have enjoyed every exhausting, wonderful, precious moment with her these past 6 weeks Dystonia free...but as predicted, symptoms are starting to come back and I'm going in for treatment next week for the first time in almost a year.

I feel like I'm 17 and I'm being diagnosed for the first time all over again...going through all the emotions, depression, terror, frustration, succumbed to absolute and total despair last night and cried until it hurt, bitch slapped myself back to reality and got over it, and now I'm here, feeling awful that I abandoned this blog and my fellow Dystonia community just because I was in a temporary remission. My main concern is being able to take care of my baby girl, as I am essentially raising her alone and I am not allowed to have bad days where I feel like shit and just want to lay in bed and not feel the tremors rocking through my body. My life is not about me anymore-it is about Everleigh and making sure she is happy.

I don't even remember what it's like living with Dystonia because it has been so long since I've felt the symptoms. I have to re-learn how to live and adjust accordingly to make my life manageable and be the best mom (and dad) I can be. Plot twist...dun dun dun...

Last May I had the honor of winning the Douglas Kramer Young Advocacy Award and was flown to D.C. to advocate in front of Congress. It was an awesome experience but it is also left me feeling...confused...for lack of a better word. Some Congress members were awesome and listened to our stories and our pain and were genuinely interested, others not so gracious and empathetic. That's ok. I've experienced both types of people in my every day life. But making it to D.C. was THE dream. You can't go any further in advocating than directly to our government and I left feeling like nothing would be done. Hopeless, I guess you could say. Shortly after my trip is when I went into remission and I haven't had to worry about the ugliness of Dystonia until now.

I'm not quite sure what direction I want to steer this blog in...I got a message from an old friend with a completely unrelated health issue who read my blog and told me how much it helped her and how my words matter. I remember when I started this blog I was so nervous to be so vulnerable and open about the most difficult part of my life, but a friend told me that if I help just ONE person and make them feel comforted and not alone in some way, I've won. I'm hoping this is still true.

So now, what do I do with my life? Nothing went as planned, largely due to my own mistakes and shortcomings and I've chalked a lot of that up to a simple fact: I haven't fallen in love with myself. I have relied on a man throughout this whole journey to sustain me and make me feel not so...alone, as Dystonia can do. It WANTS to make you feel isolated, broken, unworthy, like it is something to be ashamed of and that you are nothing but a person with a lot of baggage no one will want to carry. That CANNOT be true though. I feel that way about myself so often...the question of 'who would want to love ME through all this craziness?' crosses my mind more often than it should, and what I'm realizing is I have been asking myself the wrong question. What really matters is do I love MYSELF despite my circumstances? Do I BELIEVE that I am worthy of love? Hmm...so now I'm single for the first time in my life, I'm a mother, I'm living with Dystonia, and I'm trying to figure out what that all means.


When I started this blog, it was a journey of advocacy, awareness, and it unintentionally became a log of my love life. So I guess the journey now is loving myself, broken and humbled and living with my eyes wide open for the first time in a long time. I want to be able to say that I got through this without relying on another person. I want to make my daughter proud to be my daughter and I want to teach her what real strength is. I also want to teach her it's never okay to allow people to treat her the way I have been treated. We teach people how to treat us and I'm finally starting to understand that...

I'm writing again with the hope that someone reads these words and is comforted by the fact that we are all suffering in some way but that we don't have to suffer alone. It is possible to find the purpose for our suffering. I don't know why I had to get pregnant for me to realize I was making a huge mistake, but I'm glad I did because now I have my daughter. I'm not sure why my heart has to keep breaking in a million different ways for me to see the light of day. I'm not sure why I keep LETTING people point out my shortcomings; being ill, having Dystonia, having a baby...I understand it doesn't make me the most eligible bachelorette in the city but I want to get to a place where I can accept these things about myself and BELIEVE that they're not baggage-they're a part of who I am and these things are beautiful and terrifying and they make me who I am. I want to get to a place where I can say I am fucking awesome and anyone who tries to tell me differently can eat it. I'm 23, I'm still coming to terms with my disorder, and I don't have all my shit together. And I'm ok with that.

It's hard being this vulnerable after all I have been through this last year but I started this blog swearing I would be nothing but an open book. My book has been shut and closed off for so long, I'm ready to start writing new chapters and being honest and open and passionate like I was when I started this journey. I hope it helps people. I'm sad Dystonia is invading my life again but excited for where it will take me this time. 

As Miley says...we can't stop....
Yes, I just did that. Slightly disgusted with myself for naming Miley, but whatever, it works.

As usual, I'm all ears and eyes and willing to listen, don't be afraid to send me an email or message me. And for all you fellow Dystonia survivors out there, keep twitching and spazzing and contorting on and look fabulous doing it. You're not alone.

                               "My primary relationship is with myself-all others are mirrors of it. As I learn to love myself, I automatically receive the love and appreciation that I desire from others. If I am committed to myself and to living my truth, I will attract others with equal commitment. My willingness to be intimate with my own deep feelings creates the space for intimacy with another. As I learn to love myself, I receive the love I desire from others." ---Shakti Gawain 


  1. Do you know Pamela Solate? She also has a Dystonia blog. You both do amazing work

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  4. Nicole, you are incredibly good.
    Because I have a not so heavy CD I for 17 years and am in Germany a leader of a big self-help group for dystonia, I can understand your thoughts. For me you are a charming person who earns big respect. It are in my eyes for many people with dystonia a model.

    You will be of course a good mother for your small, thus sweet daughter that I can fancy very well. For it and for your other life I wish you big strength.
    And you should find your luck again.

    Lots of love

    Franz Krämer

    Nicole, Du bist unglaublich gut.
    Da ich ich seit 17 Jahren eine nicht so schwere CD habe und in Deutschland ein Leiter einer großen Selbsthilfegruppe für Dystonie bin, kann ich Deine Gedanken verstehen. Für mich bist Du eine liebenswerte Person, die große Hochachtung verdient. Du bist in meinen Augen für viele Menschen mit Dystonie ein Vorbild.

    Du wirst natürlich eine gute Mutter für Deine kleine, so süße Tochter sein, dass kann ich mir sehr gut vorstellen. Dafür und für Deinen weiteren Lebensweg wünsche ich Dir große Stärke.
    Und Du sollst wieder Dein Glück finden.

    Liebe Grüße

    Franz Krämer

  5. I believe I have this disorder. I have tremors of the head , arms, hands , and legs.i believe this disease makes the spine pop out of alignment because weak muscles and tight muscles. My tremors stop completely when I'm in. When the neck and upper body is out cause tremors in my head ,arms and hands. When the lower back is out it causes tremors in legs. Pain comes from being out imflumation develops.