Friday, February 21, 2014

Dating: The Sequel

I want to...no, NEED to...address this topic as I received a very interesting email from a very kind woman seeking my advice. I know that I have talked about dating in some of my previous posts and even have a post called Dating. I just went back and re-read my "Dating" post from almost 2 years ago and it made me cringe a little bit...I said in that post that hopefully in the future I would gain more insight into the dating with Dystonia world and revise, so here is my revision. But first, what brought this on? A very nice and confused woman from Malaysia of all places!

I received an email this week from a woman who just started dating a guy with Cervical Dystonia. She asked me two questions that I found to be very interesting. The first: How will Cervical Dystonia affect our relationship in the long run?" The second: "Am I making a huge mistake by committing myself to him?" 

I found these questions fascinating because it gave me insight into what men might potentially question about me before considering dating me or committing themselves to me. It stung a little but they are legitimate questions and concerns and I wanted to address them and give my perspective in case another confused man or woman questioning their relationship stumbles across my blog.




To answer this question I had to put myself in her shoes and think hard about whether or not I would be able to date someone with Dystonia or any other illness. If I was the healthy one and I met someone with Dystonia, would I be wasting my time by dating or committing myself to them? Could I be strong enough to accept someone for who they are, Dystonia included if I loved them? Why would the illness even be a factor? My thoughts: If you love someone, you love every piece of them. Wedding vows are "in sickness and in health" for a reason and should not be taken lightly. (And yes I'm aware of the irony of this considering I almost walked down the aisle.)

Because the truth is, if I met a good, kind man and I legitimately liked him and saw a future, what in the world would keep me away?? I can't imagine looking someone in the face and saying, "I'm sorry, you're a wonderful person and I could really see a future, but because you have Dystonia, I'm going to have to pass." It's just like the last idiot I tried to date more or less telling me that because I had a child I wasn't worth his time. If you really want to make it work with someone, nothing, and I mean NOTHING should keep you away. 


I understand that the fact is, not everyone has the strength to date someone with a little bit of adversity in their lives. It's just how it is. Not everyone is a good match even if the chemistry is there. My life is filled with good days and bad days, Botox appointments every 3 months and days filled with pain afterwards. Does it make me any less worthy of love? Does it define who I am and what I have to offer? It has made my life more difficult but it has also made me more compassionate. It has made me accept that health doesn't last forever and it is something to truly cherish. I have met some amazing people and have been inspired to tears. It has forced me to be strong when I want to give up. It has made me appreciate the good days and find a way to laugh through the bad ones. I have found a powerful desire to keep on keepin' on when things seem impossible, and if that is something to be found undesirable, then there's not much I can do about that. You just have to hope someday someone will appreciate everything you have to offer. 




I have experienced someone I was dating tell me that if I was perfectly healthy things would be different right before we broke up. And it BROKE me. Validated every insecurity I had about my situation and rubbed it in my face. But you know what I took away from that ignorant and pig-headed statement? IT'S NOT ME THAT IS THE PROBLEM IN THIS SITUATION. It is absolutely, 100% his problem and should not be a reflection of my worth. I hope everyone with Dystonia or any other unfavorable circumstance realizes this. 
Because don't we all have something in our lives that is less than perfect, less than favorable?  



This was part of my response to my new friend in Malaysia.

This guy might try to push you away or continue to question why you would commit yourself to him. But I believe what he needs more than anything, if your heart is willing, is reassurance. It takes a strong person to accept someone despite the hard circumstances. I have come to learn that what I personally need more than anything in a partner is someone who loves me so much they are willing to go through all the ups and downs with me. I would hope someone wouldn't give up on me because I have Dystonia.

I think in a way, everyone has a Dystonia. That ONE thing in their life that makes them question why ANYONE would choose them, pick them, love them. 

Let's be honest, we all want that love and I believe we all deserve that love. I appreciate this woman taking the time to evaluate her relationship. I hope she gives this man a chance and doesn't go running and screaming in the opposite direction. 

Dating for me is a whole new game now; I not only have Dystonia but I now have a beautiful baby girl. I have already experienced someone making me feel...bad? unworthy? about having a child. Like she's baggage or something undesirable. It stung. and honestly made me feel like shit. And I cried. A lot. And those old questions of who the hell would want to date me? came crawling back like a bad infection. It took me a couple weeks to snap out of it and realize that his inability to accept every faucet of my life is his problem and not mine. And that's okay. A portion of that quote from He's Just Not That Into You came flooding into my head..


"...looked into your beautiful face, took full stock of you and all your qualities, and told you he was no longer in need of your company."

No one should take stock of all your amazing and flawed qualities and make you feel like you're not good enough. 

So my take on dating with Dystonia, whether you suffer from it or are dating someone with it, it doesn't define who you are. It hasn't defined how nice of a person I am, it hasn't affected my ability to love and laugh and travel and enjoy life and desire and crave love and make something of myself. It is part of my journey and I fully believe that someday, someone WILL take full stock of me and all my qualities and be like yes, you are enough. I hope everyone experiences this someday. I came so close to settling for less than what I now know I deserve. We all deserve magic. Life is too short for vanilla love.




Wait for it...


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 

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. (My fiance and I REALLY want kids.)
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: I am tying my life to an amazing man, and if my future is uncertain, so is his.
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. 


Monday, February 11, 2013

The Great Unknown

Another annoying period of writer's block. My emotions and my body have been all over the place lately. I went in for Botox on December 20th and in an attempt to avoid as much head weakness as possible, she did not do injections in the back of my neck. She also said that if I was not doing better the next time I came in she would have to increase the amount the Botox she is using. My translation:
I'm getting worse.
My anxiety has been off the charts for these past few months. Especially with my wedding and future plans coming together so quickly, the reality of my situation has been hitting pretty hard. 
Can I have babies? Where will we live? Will I ever find a high-paying job or will we have to struggle?

My mind keeps going back to what my biopsych professor said last year. We were learning about movement disorders (Dystonia was not one of them, which is actually what inspired this blog.) This professor was not aware that I suffer from a movement disorder, had he known I doubt he would have said what he said one day in class. As we are learning about these disorders, some of which were very similar in symptoms to Dystonia, he made the comment that if he suffered from a movement disorder, the last thing he would be doing with his life would be wasting it inside of a classroom. 
.......uhhhh.



I work 5 days a week and I do pretty well physically; working in a spa has its advantages. I am only taking one class this semester and it is already almost unbearable for me to sit there for 3 hours once a week. I don't know what is going on with my body. It feels like all the tension builds from my lower back up and explodes into my head. The pressure is UNBELIEVABLE. I am so uncomfortable I can't even focus on what I'm supposed to be learning. Not only that, but I am SURE this makes my Dystonia worse. 
So what the hell am I doing?


It's so frustrating for me because I was always the girl in my family that exceeded in school. Dystonia changed all of that and I feel like all the potential I was gifted with has been robbed from me. I don't want to disappoint my family or feel bad about myself or feel like I'm giving up. But realistically, struggling and suffering my way through Lord knows how many more years of school and then not be able to do anything with that degree IS a waste. I would rather work and learn as I go. I love my job, I love the people at my job, I just want to be able to support my future hubby to be the way he supports me. I don't want to be rendered useless. I want to have a baby! My fiance is too amazing of a person to not pas on offspring into this world. We need more people like him in this world.
I have been so cranky and mean and bitchy and whiny and SO utterly exhausted and I can't even find the words or reasons to explain to him why and he STILL doesn't break. He holds true to his faith and love for me and takes it with a grain of salt. 
I had the chance to sit down with his mom and she brought up my situation. Her eyes got all watery and she told me that even if I end up in a wheelchair or completely handicapped in the future, Jeremy is perfect in the sense that it won't waver him or his love for me and he will stick by me no matter what. She told me this on Christmas. I am marrying into the most AMAZING family. 





Everyone with Dystonia deserves what I have been blessed with. It takes a special person to do what Jeremy does and to face what we are facing, I cannot wait to stand up there and say our vows and someday bring a child into this world. I know what I am getting myself into, getting off all treatment to carry a baby. But I guess we will cross that bridge when we get there. 

I guess I'm just feeling a bit lost. I don't know what God wants me to do next. School is just not in my heart. It's not something I would have chosen to give up but if my body is telling me it's making things worse, I can't ignore that. 

What now? I do not know. I know what I have, I know what I am blessed with, I'm just scared at this point. I don't want to get worse. I have to wait until March to find out what my Nuero says. If anyone has any advice or input, I'm all years.

Oh, and Chelsi Christmas, God has created a wonderful human being in you, I love you for always being a text away from an encouraging word and a reminder that God has not forgotten me. You are pretty rad and I love you!

Until I get out of this funk, all I can do is wait for God and whatever He has planned for my life, no matter what that looks like. 

ps...I'm getting married in 215 days. EEEEEEEEEEEEEEEEEEEEE!!!!


Monday, November 5, 2012

I'm Still Here

I can't believe I have failed to write a blog since July! I could blame it on all the crazy and exciting and stressful things that have happened in my life since then, but at the end of the day I have no excuse. I've been getting subtle signs and nudges from people I care about to start writing again; I have received 2 emails this week alone from random strangers from different parts of the country letting me know how happy they were to have stumbled across my blog. I got a text from a much loved friend who shares this strange disorder saying she missed my blogs and how much they helped her. 
Not only that, but I have been extremely stressed out, and writing is a perfect cure for stress. 

The first thing I would like to mention is I have to laugh reading all my blogs about dating. I am marrying the most wonderful, patient, and kind-hearted man I have ever met; he is more than I could have asked for and has willingly dove headfirst without hesitation into my scary and unpredictable life in living with this disorder. I have learned so much about myself and how living with this affects my mood, behavior, and how I treat people. Moving in with someone who is just getting acquainted with Dystonia is not an easy thing-there is a lot to explain and living in such close quarters with someone when I am in the middle of a dystonic storm can be quite the challenge. I'll admit it, there are days where the pain and agony is so severe and frustrating that it unfortunately comes out on my fiance, Jeremy. I would expect any guy to either lash right back at me, get mad, confront me, kick me in the face for being a butthead, etc etc. 
Never did I expect such patience and love. God knew exactly what I needed and was faithful to bless me with such a guy, and boy did God do a good job because this is a good one!

I have learned that I need to find a way to channel my frustration when I am in pain. I'm not quite sure how to do that. I just tell Jeremy I'm having one of those "Dystonia days" and I don't feel like talking at all. The last thing I feel like doing is talking. I try to focus on other things besides the pain. It's hard. When I lived at home I didn't have to explain much; my family was there from the beginning when this first hit and saw the transformation and learned that I have days I need to be left alone. I have never had to explain it before but I'm grateful I have a guy who understands and is more patient with me than I deserve. Can't wait to say I Do and marry him next September. I don't deserve someone as kind-hearted as him but that's the beauty of God. Just another blessing He has poured out into my life. What happens to me happens to Jeremy, and what happens to Jeremy happens to me. For any girls out there, young, old, somewhere in between, I know dating with Dystonia can be rough. It's confusing and frustrating. But there ARE good men out there, I promise! Wait for the one that will embrace every faucet of your life, good and bad, without hesitation. It's worth the wait, pain, and bumps along the road you may face.



On a different note, the stress that my job has put on me has resulted in me dropping the only class I was taking this semester. I live about an hour away from my job and not much closer to my college and I have learned after 4 years that pushing myself is not worth the toll it has on my body. Unfortunately, I still have no idea what I want to do with my life. I have to be realistic and factor this disorder into the equation when thinking of a career path. I love writing; I love advocating. It seems to be the one thing I am passionate about. School, not at all. Life is too short! I'm too unhealthy at my age to waste my time sitting in a class being uncomfortable as hell learning math equations I will never use outside the classroom. That's how I feel right now, at least.
I'm not discouraging anyone with Dystonia from going to school; it's just one of the things I haven't quite figured out how to handle yet. My heart is simply just not in it. So for now, it's work. I know that won't last forever though. Eventually I am going to have to figure out what it is I want to do. 
Having kids is next on the list of complications. Jeremy and I very much want our own children, but I don't know how someone with Dystonia can do that. It terrifies me to think it might not happen. Not something a 21 wife to-be should be stressing about. Praying it's all in the plan! If anyone out there has experience, knowledge, advice, anything about living with Dystonia and pregnancy, please please please reach out to me!

I guess the whole point of this particular blog is to let my regular readers know I'm still here! I'm still here, I'm still fighting, suffering, crying, enjoying the days that are pain-free, dealing with the ones that aren't, and trying to support anyone in pain in any way I can. There are a few people in particular I can think of that I know rely on this as a source of comfort and commonality, and I'm so sorry I've been MIA! I'm not going anywhere!! I'm here for support, comfort, venting sessions, dating advice, or even if you just need a friend. I'm not going anywhere! I'm going to keep myself in check and be more diligent about writing regularly.

On an exciting note, to those who get the Dystonia Dialogue, look for my face :) They published an article I wrote about living with Dystonia and being so young. If I accomplish nothing else but reach out or touch at least 1 person, I will be satisfied. Love all my fellow Dystonia friends out there, as well as the real life family and friends who have pushed me to get back out there and continue writing. I appreciate all of you :)

I'll be back, I promise.


Sunday, July 22, 2012

From The Inside Out

Sometimes, someone can tell you something a million times and although you agree, you don't fully get it until you realize you never fully got it. 
Got it?
That was probably very confusing, I know. I have been saying for years now, Dystonia does not define who I am. And I am slowly starting to see what that REALLY means. 
It means that God has plans for me, good plans, and wants only my love and devotion to him.
The things He gives to me are things I do not deserve but are beyond my wildest dreams. I am incredibly blessed to love a God that loves me first, despite my shortcomings.
It means that I can meet someone and somehow, through the grace of God, they can see my heart, not the things that complicate my life. Just me. And what I am about. And I suddenly don't feel the need to talk about my Dystonia, there is just an unspoken peace that truly, it's okay. And it's going to be okay. And I'm so glad I did not give up.







I have never directly addressed my faith in this blog, mainly because I understand that everyone has different beliefs, and I want this to be a safe place for Dystonia sufferers' to come and be reassured, you are not alone in your pain. But God is my safe place. People often comment that I have handled this reality very well, and I can honestly say it's the peace I get from knowing that God has my life and loves me, He will not let me fall without helping me back up. 
So when I say Dystonia does not define my life, I finally understand that God does. All it takes is letting go of the fear and the selfishness and the anxieties that this disease causes-will I be crippled? Will I get better? Will I get worse? Will a man ever love me beyond the complications of this disorder? 
No matter what the answers to any of these questions are, the minute I let go and stop all this needless WORRYING, I suddenly realize that I have no control over these things, and that is okay with me! My body will surely fail, just as everyone else's eventually does. But to walk through my life, in this body, with grace and a peace about it all is something I encourage not just Dystonia sufferers' to do, but everyone. I hope I do not offend anybody out there, I respect that we all have different beliefs, this just happens to be mine.
This is where I get the strength to keep going, to keep living my life with the child-like hope that God has some amazing plans in store for me. They are unfolding in a way that I can hardly fathom-and suddenly I realize how much God loves me. He WANTS me to have all the things my heart desires-to be a wife, a mom, have a family, help people, write with an unfailing passion, and most important, live my life through Him. Be an example to people out there who are lost. I've been in some dark places in my life, especially with this disorder. But guess what-there is always a light at the end of every dark place, if only you allow your heart and mind to go to that light-turn away from your worries and your feelings of despair. Find a purpose to the pain. Find that purpose and turn it into something wonderful.






I know us Dystonia-sufferers' out there have good and bad days-some REALLY bad. Like curl up in a ball and cry bad. I know there are people with physical and mental symptoms that have no cure. 
Don't be mistaken-I don't have it all figured out, but I do know this-God is looking out for every single person out there suffering, He loves you and He will always love you. Suffering or no suffering, find a reason to go on and not let this break your spirit. I know it can. But don't believe the lies. You are good enough, you are beautiful, find that beauty in the parts of you that feel broken.
This is my advice, this is the foundation of my life and I am so inspired by some of the things I have felt and experienced this past week. I finally understand-everybody is God's somebody, including me. I am undeserving and I make mistakes but God loves me enough to help me find a purpose to this pain I live with and then bless me with more than I ever prayed for. God is just THAT good. 


For the 20/30 Dystonia Facebook Group members-I read every single person's post and I can almost hear the desperation and pain through the words. I understand all of it. So I encourage all of you to not be discouraged! YOU ARE NOT ALONE. You have something so beautiful looking out for your life, broken or not broken, Dystonia or no Dystonia. You all are so wonderful, you all inspire me to keep writing, to keep being an outlet to this community of wonderful people who just happen to suffer from this strange disorder. 
But I promise you-you are more than the pain. It's the heart that matters. 


As always, if anyone out there needs a friend to talk you, especially my Dystonia friends, I am here! I'll be here; I'm not going anywhere.




"Write as if you were dying. At the same time, assume you write for an audience consisting solely of terminal patients. That is, after all, the case." -Annie Dillard


"I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way than this: where I does not exist, nor you, so close that your hand on my chest is my hand, so close that your eyes close as I fall asleep."
SONNET XVII
Pablo Neruda


Thursday, July 12, 2012

Sticks and Stones

Another horror dating story and a complete lack of respect for what I go through.
A guy I had been sort of seeing has accused me of "using my Dystonia to get attention" and he also said that he "sees what type of person I am now" and that the pills I have to take for this disorder have "permanently affected my brain so I am now unable to comprehend things."
I talk about Dystonia because first of all, I'm advocating for it. OF COURSE I'M GOING TO BE TALKING ABOUT IT. Second of all, if I'm seeing someone, it's going to come up every once in a while. You know? Like hey, I just got Botox a week ago and can't hold my head up, can you please lift the ice cooler for me, honey?
I talk about Dystonia because I am trying to reach out to those who need to know they are not alone.
I go through what I go through because God decided I was strong enough to do this. To live with this. To suffer every day with this. And I feel like I've been doing an OK job so far at wrapping my head around this reality and living as normal a life as possible.


You know when you're kid and you're programmed to say 'sticks and stones may break my bones but words will never hurt me?' 
How wrong those words are.
It's amazing how significant one insult, one accusation, one ignorant comment, can leave such a scar on the heart. 
Why would I ever use something that tortures me for attention? When people ask about my Dystonia and I tell them, whenever people reply with puppy dog eyes and a "Oh gosh I'm sooo sorry," the first thing I say is PLEASE DON'T BE.


I don't want anyone EVER to feel bad for me. Or to pity me. There is a difference between having compassion and respect for someone else's pain and pitying someone, and I never want anyone to feel bad for me. This has shaped my life in such a powerful way. I will repeat this until I die, God works remarkable good out of unspeakable tragedies. Honestly, I get a little freaked out thinking about who I would be or what I would be like if this hadn't happened to me. I could have turned out to be a raging alcoholic or a complete party animal who gets knocked up too young. I don't care to know that person, and I'm grateful I would never have to.
I know who I am. I know my heart. And being accused of USING this offended me SO much, my jaw dropped. My heart started racing. I yelled at someone for the first time in a while. Like, really yelled. 
I'm trying to take something bad and scary and show people that you CAN overcome your circumstances and see the good in life through the storm. I would never use this to get a leg up or to my advantage somehow. What a horrible accusation. How offensive. My response to him was..
"I wish we could switch bodies for a day and you could physically feel what I go through, and then see how you would feel if someone said they think you use your suffering for attention."
Had no effect on him whatsoever.










What is wrong with people? Our world is so fallen. Obviously, this guy is NOT my prince charming. It did make me question myself though. I really hope that I do not come across in a way that is not reflective of what is in my heart.
I'm here to reach out to people. To inspire. To let other Dystonia sufferers out there know that they are NOT alone. I'm here, I'm young, I'm motivated, and I am not going ANYWHERE anytime soon. As long as I'm breathing I will be fighting against letting this ruin my spirit and my heart. God never gives you more than you can handle. I have been so discouraged lately, I won't lie. But ironically, this guys ignorant and inaccurate perception of me snapped me out of the funk and the writer's block and just affirmed who I really am. 
Come on, Nicole, you're better than that! Surely God wants more for me than that. 


What a crazy journey. When the first guy I mentioned in this blog said that if I was healthy, things would be different, it affected me so much, and I'm ashamed to say I let it. Every person, young or old, sick or healthy, rich or poor, deserves so much more than these comments. Gaining a selfish advantage by using my disorder in some way is not in my heart. It is not in any fiber of my being. I wouldn't trade anything in this world to make things different. This has made me who I am. I have not been feeling good physically lately but the fact that I am able to say I would rather suffer and know my heart than be healthy and not have a damn clue, how is that anything short of God working in me? I just want to be an outlet for people, a safe place to go to, a light in a really dark place.
I have said this in previous blogs, I am not just fighting for myself. I am fighting for thousands of people out there who are hurting. People are suffering, people are scared, people's lives and the quality of those lives are at stake! So shame on the guy that accused me of USING this to get attention. Shame on him. 






Another failed prince charming. He ended up being another frog. A frog I am grateful for though. He thought his words would affect me; sorry bro, you just strengthened my heart and the confidence I have in what I'm doing here. So thanks!


I'll know when my prince charming arrives, but I'm done searching. Dystonia does not define who I am, but it is a PART of who I am. If someone is going to love me, they have to love the Dystonia. I know I do. Otherwise, who knows? I might have married that ignorant frog if I did not have this disorder to show me who he really was. 
Dystonia: 1
Ignorant Frog: 0


You lose. I'm still here. And I'm not stopping. 







"If a train doesn't stop at your station, then it's not your train." -Unknown