Friday, March 11, 2016

The Remarkable Good in Unspeakable Tragedies

I'm back!! Okay, technically I didn't really go anywhere but I have taken a huge step back from advocating for my own self-preservation. Working full time and raising my now 2 year old as a single mom has been a juggling act. Honesty, I'm tired.
I write this from a car packed full of dogs and family somewhere in the middle of Arizona. The coffee is flowing and my brain won't shut up so why not write it out? I have received a ton of emails lately and I have been unable to follow my true passion and respond in an undivided attention sort of way. My attention has been elsewhere-I am balancing a very fine line between suffering with a progressing brain disorder and my desperate attempt to pretend my brain isn't sick and wanting to live like a normal 25 year old. 
I've been failing. And that's ok I think. Focusing on things outside of my illness has been crucial to my success as a mother and work, not that everything is perfect on both fronts but my God, I'm trying. I think I can I think I can....
Until I can't. 

The biggest battle in facing with dystonia right now is of all things, love. Something my heart so craves, something my daughter deserves from a real father figure, something I don't believe I will ever find. I spend so much time telling people God has a beautiful plan for their life, that He's  writing their love story, and yet I am unable to believe the same will happen for me. Why? Why? Why? 
I am embarrassed by my disorder and the complexities it brings. This "invisible" disorder has left me so exhausted. The idea of explaining to a new person how my life works is exhausting. The idea of going out and socializing after a week of work and being 100% devoted to my daughter is unbearable. Night after night after night I stay in, so craving a best friend and partner to just BE with me, be with me through the pain and the tears and the frustrations and loving me despite all of it.  

So what do you do when you're a 25 single mother with a progressive brain disorder but desire a husband and a family and love and travel like any other young woman my age? Does anyone have an answer to this question? I spent most of this last week crying watching my sister and her now fiancĂ© (yay!) just BE. The attentiveness, the respect, the playful banter, seeing them both be able to be themselves...oh my. It was something to watch. Something special and something I have only experienced once and it was magical. It was home. It had to end but watching my sisters love reminds me that it's out there. 

Does this exist for everyone? Am I not meant to go down that path? Will I ever meet my best friend to share this crazy life with? Someone who will love my daughter and want to be apart of our lives?

My heart is so heavy it's hard to breathe. I have no idea what I'm doing with my career, navigating the messy blunders and highs and lows of single motherhood, trying to maintain my health to the best of my ability...I think a quarter life crisis is a normal part of life but it's brutal when the unknown is all around me. I spend most of the time being absolutely terrified of my life. How stupid is that? 

These feelings will pass and I know other young women suffering with dystonia feel the same way I do but oh man, my heart hurts. I take so much comfort in my dystonia community, knowing I am not alone in my feelings, and I thank this community for that. 

Finding a purpose for my very complicated life is a daunting task but I have to do it to keep going until I can't go anymore. Because the truth is I could be immune to my treatments tomorrow, or next week, or 15 years from now...only God knows.

If any other young women or men with dystonia feel the same way I do, take solace in the fact that we can all feel alone together. My all time favorite reminder:

Just because God works remarkable good out of unspeakable tragedies doesn't mean He orchestrated the tragedy. 

I am trying to find the remarkable good, on his terms and not mine. My purpose may be bigger than my dream of getting married and having more kids. For the first time in a long time I have no answers and no clear direction. Can we all be lost together? Find the good in our broken bodies? Is that a remarkable good? I would like to think so. 

If anyone out there needs help, reach out to me. I'm always here. A little broken, a little confused, but here. Still fighting for my life-not in a life or death sense-but for my quality of life. I urge every sufferer to keep fighting. 

C.S. Lewis said, "It's not the load that breaks you down. It's the way you carry it."

Carry it with as much grace as possible. Let yourself have bad days and good days and broken days and cry and laugh and be frustrated but don't dwell in it. Don't let it define you. I'm not there yet but I'm a work in progress. I love this community. Don't hesitate to reach out. I'm here.


  1. Hi Nicole,

    I'm Carmen I'm currently stationed in California and have been experiencing dystonic movements for almost a year. I just want to extend a smile to you. I am interested in joining the group so I can get more insight into this disorder because I have yet to be diagnosed with a type of dystonia or similar neurological disorder.

    I pray the best for you and your daughter.

  2. Hi Nicole! I am writing because I want to share with you that my sister has found incredible relief from cervical dystonia in terms of pain and movement. Her journey began in 2014 and became very severe in several months time. I prayed desperately for relief for her and it came. Please, let me share it with you. It is not surgery and anyone can try it. You would know in 6 days that it was working. Minimal cost too. Please, contact me at 620 453 1629. I am a wife and a mother of 4 and I live in Hugoton, Kansas. Just so you know a little about me.

  3. Hello my name is Angie I was diagnosed in 2014...altho I had it long before then. My mother has cervical dystonia. I had had some symptoms as a child. The tremors in my hands we're as long as I can remember. Everyone use to ask my response was always idk my mom does.. Anyway initially I was diagnosed with cervical dystonia. As of now they told me to just call dystonia. Currently I have Hemi dystonia but who knows what next year will bring. Recently I woke up to go the restroom I couldn't move my legs. Going to the hospital no one knew anything about anything in the area that I'm in. They transferred me out to a bigger Hospital. Sadly I'm happy to report I'm on a walker at 40 years old. I currently have at home nurses and Physicians coming in my house. I just wanted to make you aware that you can get disability for dystonia of any type. It may take a couple tries but it does fall under disability

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    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so 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 for advice and for his product.

  6. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And live with my boyfriend in Belgium, but I am UK. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through, I don't have a baby though. I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; for advice and for his product.


  7. Thanks to Dr Williams I am so mush happy today, I have been suffering from cervical dystonia for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to become dystonia free , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after I took his medication as instructed, i am now completely free from dystonia within one month of usage, i am so much happy, thanks to Dr Williams for helping me get my life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have dystonia you can always go through his website on for more information ..

    1. Thanks for your good recommendation to Dr Williams,am now also free from cervical dystonia after one month of using his medicine.

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