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

Wednesday, September 3, 2014

In Memory Of

When you're 23 years old, you shouldn't be thinking about your own mortality.
You shouldn't feel like getting out of bed every day is a struggle.
You shouldn't perfect that fake smile and laugh when you're really writhing in pain.
You shouldn't be wishing that your quality of life could be better.
You shouldn't be terrified of the future and wonder how in the world you will survive another day of your life.

September is Dystonia Awareness Month. 

I made this blog to uplift, provide information, support, share personal struggles, triumphs, and offer a tiny beacon of hope to those suffering. All I've ever wanted was to inform those who want to be informed and be a safe harbor where other people suffering from this horrible disorder can go.

I try so hard not to complain. I try so hard not to despair and truly live in the moment.
I have tried to count my blessings and focus on how incredibly blessed I am and focus on all the good in my life.

Don't be fooled.
I live in a constant war zone-it's just not a visible war.
I am good at deceiving people. I am good at playing the part of a normal 23 year old woman with a great job and an amazing baby girl. 

But it's awareness month, and I have to tell the truth. The honest, ugly truth. My symptoms are not visible because my Dystonia is reasonably controlled to the extent that I can hide it. But it's there. Its. ALWAYS. THERE. It is my demon and my burden and my dark cloud and I can't escape it.

The truth is, I'm tired. I'm tired every single day when I wake up and assess how my body is feeling. I'm tired when I go to bed every day and I feel the spasms cascading down the back of my head and all around my neck.

The truth is, without treatment, my head and neck bob up and down, side to side, contract without release with such force I swear my neck will break. I swear it almost happened once; before I was diagnosed; the first ER trip I had to make 6 years ago.

My heart breaks when I pick up my daughter and she is so heavy that it starts to affect my neck and I can't hold her anymore.
I'm scared when I think about what will happen to me when I become immune to one of the only forms of treatment available out there-botox injections, about 10-20 needle pokes directly into my neck muscles.
What will happen to me?
Will I need deep brain stimulation? 
Will I qualify?
Will it spread?
Will the pain I'm in get worse as time goes on?
Will I start to give up and resign myself to the fact that my body is broken and I am disabled?
Will I be able to work? 
Will I be able to travel?
Will I be bed bound?
Will I want to die?

Because that is the truth. I am disabled.

I try to ignore the war going on inside my brain and body; it is absolute chaos inside myself and I feel completely betrayed by my own body. The pressure is unbelievable. I feel so much weight and pressure from the shoulders up I can barely see straight some days. Some days I'm so dizzy from forcing my head to be straight when it really just wants to contort to the left that I feel nauseous and dizzy and cranky and mad and bitter and it changes who I am.

This wasn't supposed to happen,
This wasn't supposed to happen,
This wasn't supposed to happen.

I was only 17.

I have what my doctor considers a "mild case," which is absolutely insane to me because of how horrible I feel.

How do I describe what Cervical Dystonia feels like? It changes every day.

Right now, I feel like my muscles from the shoulders up the top of my head are dancing, but not in a friendly way. If I completely relax my body, my head is contorted to the left, sometimes right, and sometimes I lose it completely and have a random tremor and my muscles tighten and my neck takes off in whatever direction it feels like going. And it hurts. 

The pressure on my head is unbelievable. This sounds weird, but I can FEEL my brain misfiring. I can feel it. I felt it 6 years ago when my symptoms first started and I straight up told my parents, "It's my brain. I can feel it. It's my brain." 

Every time I take a deep breath in my jaw locks up and it's hard to breathe. 
 I am constantly fidgeting, adjusting, touching my face, ears, hair, using any sensory trick I can to try to feel in control.

A good attitude and a positive outlook helps; but it doesn't cure. It doesn't take away from the suffering. 

These words are not exactly inspirational, but it is awareness month, and this is what is happening. My goal for this month is to be raw and honest and not sugarcoat anything.

This is a terrible disorder. And I'm angry. No, I'm fucking pissed. 

 I'm sure a lot of people are now familiar with ALS because of the amazing advocacy done through the ice bucket challenge. 

To me, Dystonia feels like the opposite of ALS. The muscles contort, twist, tighten, and move with no mercy and without permission. More people have Dystonia than ALS. 
 300,000 people in the US and Canada are known to have Dystonia. That's only a fraction of the real number. And that doesn't include the thousands that are misdiagnosed because doctors don't know what Dystonia is and that doesn't include all the kind souls from across the globe who I know are suffering. 


Where is our ice bucket challenge? Where is our knowledge and awareness and research? Why am I not screaming from the rooftops that something has to be done??

I'm sick of having to explain to DOCTORS what Dystonia is.

To be honest, I cannot imagine living another 10 years like this.
And that is the honest truth.
I am not suicidal by any means, but I cannot wait for the day where I enter those pearly gates with a healed body and know no more pain.
I can't wait for all of this to some day make sense.


I don't let Dystonia stop me from living my life but the facts are what they are.

There is no cure.
And it is progressive.

How do I wrap my head around that?
Is that even possible?
God, where are you?


I hurt. 
Dystonia doesn't discriminate. Babies are born with it. Children develop it way too young. It effects teenagers like it did me, and it effects the elderly and the middle-aged. 

We need help. We need research. We need awareness. We need funding. And we need to tell the truth.

We are in the process of trying to petition to the White House to OFFICIALLY make September Dystonia Awarenes Month.

Anyone who reads this-could you do one thing for me?
Click on the link. Sign the petition. It takes 5 minutes.

https://www.facebook.com/makeseptemberdystoniaawarenessmonth




I will be posting more of my truths throughout this month, as every day is different and that is the terrifying part of Dystonia. Maybe next week I'll feel great. Maybe I won't. 
And that my friends, is the problem: WE DON'T KNOW.

I wish I could remember what I was like when I was 16, before all of this happened. A part of me died when Dystonia came to life and I feel like I have a commitment to the girl I was before this happened to make the best of the hand I was dealt. I think I smiled a lot. I had a lot of all-nighters with my best girl friends. I was happy. Rebellious. Always on the go. In love. I had a dream to go to college down South but instead I spent the better part of my senior year of high school bed bound, stuck in a contorted position with my head being pulled to the left with indescribable pressure. I had around the clock care; I couldn't walk and I couldn't get my own food and I was completely dependent on my family and my then-boyfriend. 
I lost 25 pounds in 3 weeks and got down to 92 pounds.
I was on so many medications I couldn't tell you my name.
I cried all the time. All.the.time.



And that is no way to live. That IS NOT a quality life. 


And that is what I am realistically facing if a cure is not found. 

Dystonia, you're a mean, cold-hearted bitch, but I will continue to learn to make friends with you and not let you win.
What's the fun in going down without a fight??

That is but a fraction of my truth. I'm suffering but I'm pushing on. Giving up would be so much easier but that is simply not an option.

In case you are a newbie and don't know what Dystonia is :

Dystonia causes involuntary repetitive twisting and sustained muscle contractions. These result in abnormal movements and postures. The symptoms usually begin in one body region, such as the neck, face, vocal cords, an arm or a leg, and then may spread to other parts of the body. When dystonia affects children, it often starts in a leg before spreading to other limbs and trunk. In adults, dystonia tends to remain localized to a body region and frequently affects first the upper body.

Dystonia usually occurs or worsens during voluntary movement. It may also happen with movement of other unaffected body regions or when the affected body part is at rest. Dystonia may lead to sustained fixed postures potentially causing permanent contractures. The symptoms of dystonia typically increase during stress, emotional upset or fatigue, and decrease during rest and sleep. Many people living with dystonia can temporarily suppress their symptoms by using “sensory tricks”. These are a unique feature of dystonia, consistent of touching the affected or an adjacent body part to decrease the pulling or posturing.


I have heard stories of people that have committed suicide because they could not take the pain of Dystonia.
That shouldn't be a reality anyone has to live or die with. 
But it's terrifying, and I understand it.

When I start spiraling into my pit of despair and pain and fear and I start to ask "Why Me?" I then ask myself..."Why not me?" I got this.
I think.

 I keep moving because God blessed me with the perfect reason to keep moving. He works in strange ways. 









Keep smiling, friends. Or try. 







Tuesday, July 22, 2014

Dear Cameron and Heather

Hi friends. Life is busy. And good. 

Althought this has been a Dystonia-related blog and my personal journey with all that comes along with that, you never know who you might reach. I have underestimated the power of social media and who this blog and my words might touch. 
I have heard from people from a total of 6 different countries now who have stumbled across my blog. I don't know how it happens but it does and it's mind blowing.

I am a big believer in paying it forward, having compassion, and being a kind person in general. Life is too short to be a selfish asshole.
Personally, I am doing great. Dystonia is there but I'm living. It is SO EASY to get caught up in my own stuff. When I'm doing bad, it's easy to get caught up in how shitty I feel. When I'm doing good, it's easy to get caught up in how awesome life is and how truly blessed I am.

BUT...
just because I am thriving, not everyone out there is. This blog is not for me. The fact of the matter is, we are ALL terminal. None of us will make it out alive. My personal belief is that when that day comes, my bags are packed for paradise. I know not everyone holds this belief and that's okay-all I can do is speak my truth and that is what keeps me going. People ask how I deal, and there it is. Absolute faith.

But let's be honest. Life is hard enough for everyone..throw an incurable disorder in the mix, a painful disease, a deadly cancer, and life can just seem downright cruel.
Don't believe that lie. There is SO MUCH GOOD. In the midst of all the SHIT there is SO MUCH GOOD. Repeat that with me. There.Is.Good. People can be good and if there is something I can do to help restore someone's faith in humanity or even just a single kind being, I'm game. So let me tell you about Cameron and Heather...

Cameron and Heather are married. Heather was diagnosed with Mesothelioma 3 months after giving birth to her daughter. She was given 15 months to live. That was 8 years ago.
Heather had a life-saving surgery and had her left lung removed. Heather was lucky to live but others are not so fortunate. Much like Dystonia, there is a lack of education and awareness and Cameron has asked for my help in putting some information in my blog in hopes it will spread outward and onward. It is a preventable cancer and they are hoping to save lives by spreading awareness. Heather lived and instead of counting her lucky stars and moving on with her life, she and her hubby are choosing to make resources available in hopes of saving a life, which in my opinion makes them pretty damn cool.Here is a bit of education and information for ya'll:

The Mesothelioma Cancer Alliance has dedicated a significant amount of time in making mesothelioma.com the best resource for patients, families, and individuals wanting to learn more about the disease. The hope is that with a successful campaign, we can educate more people about this devastating disease and raise more awareness than ever!
Let me repeat that: mesothelioma.com


I have been absolutely stunned by how many people my blog has reached, who have found refuge and solace in the fact that we are not alone in this crazy disorder. Again...we are all terminal. Dystonia or no Dystonia, mesothelioma or not. If there is something you can do to make someone's journey a little better, a little smoother, filled with just a little more joy,  just do it. It's really not that hard. Be a nice person. Get your head out of your ass and pay it forward. I love you all. Thank you thank you thank you for the support and emails and kind words. You are all angels. 

If you love hard, don't apologize for your superpower. 
"this is for you...
this is for the no becoming yes
for scars becoming breath
for saying i love you to people who will never say it to us
for scraping away the rust and remembering how to shine
for the dime you gave away when you didn't have a penny
for the many beautiful things we do
for every song we've ever sung
for refusing to believe in miracles
because miracles are the impossible coming true
and everything is possible"
       -Andrea Gibson, "Say Yes"



       You were singing in the dark
whispering your promise
   even when I could not hear
I was held in your arms
   carried for a thousand miles to show
not for a moment did you forsake me 
Meredith Andrews

Wednesday, May 28, 2014

Hold Nothing Back

First and foremost, I have to acknowledge how inconsistent I can be with these posts. I have been absolutely horrible at answering the numerous emails I have received and I SUCK at texting back. So to all the kind souls out there who have reached out to me and haven't heard back-I'm getting there. I have a very demanding and happy 5 month old and she has to be first, but I'm still here and I'm still all ears and eyes and a whole lotta' love...just distracted.




So it's time to get focused. First of all, here is the update on my own personal health & journey. As I said before, I went into a pregnancy-induced remission and unfortunately symptoms started up again when I was 6 weeks post-partum. I have had one round of Botox treatment since; that was in February and it was a very small amount injected. I still have good days and bad days but I am training my brain to find different ways of coping. I had an appointment for injections last week but I cancelled the appointment because I feel ok. Not perfect. But why inject myself with something if I'm not truly truly suffering? The suffering is there but I am managing. It is a day by day process for me and focusing on the here and now has worked wonders. It sounds cliche and I'm annoyed of myself for saying it but never underestimate the power of right here and right now. Right now I am in bed with my pup and I can feel the Dystonia but I'm alright. I'm breathing. I'm moving. I'm feeling. 

I have received so many emails and I'm still delighted every time it turns out to be someone from a different country, or state, or continent. I post the link to my blog on my facebook and people have found me on google and I couldn't be more grateful for how far this blog has come and how many people it has reached. 

I've noticed that unless someone or something has truly, truly, inspired me, I don't have the best advice and I think that is a part of why I don't feel inclined to answer some emails until I'm ready to answer with an open heart and with honest advice and wisdom. 

A floodgate of openness and love and hope has opened up in my life and I'm not sure where it will take me, but I am grateful regardless because I feel that burning passion and purpose and determination to make my words be heard and seen and I just want to HELP those suffering souls out there. Based off all the emails and messages I've received, there seems to be a theme and one singular question I am getting asked; 
How do you HANDLE it? How do you ACCEPT it?




Such a simple question and such a complex answer. There is no simple answer, no trick or magic cure to living a "normal life." To put it simply, I just DO. Quitting is not an option. Laying down and letting it run over me like a truck is not an option. Throwing a pity party is not an option (okay maybe the occasional pity party is necessary but DO NOT MAKE IT A HABIT.) I'm picking up on a theme...and it scares the living daylights out of me but inspires me to the core-in all the emails I receive, every single person sounds so incredibly lost. So lost. So confused. Wandering around aimlessly with no direction; just angry and confused and hurting and afraid.

The good news is this: being lost gives you room to adapt, to change, to grab hold of an opportunity and live a life no one else has lived. It gives you a chance to think differently about your life and the people in it and for me personally, appreciate those who love me and stand by me. And I think that is the point...

This blog has unintentionally become a log of my (sometimes disastrous) love life. I can't help it. I started this with the intentions of being an open book-totally candid, completely transparent, and brutally honest even if it's embarrassing or unpleasant...what is the point of speaking my truth if I'm not going to share all? That is what connects me to this community I have grown to love and know. Speaking the truth is what has kept me going and honest about my truth and my relationship with myself.
So how do I deal? How do I accept this fate?




I believe in these simple truths:

1.) Going through something like this changes you. I don't see how it can't. It can be a bad thing. But it can also be a good thing. If it makes you a better person, a more compassionate, loving, and honest individual, find a way to have a relationship with your disorder. Embrace it. Nurture it. Adapt with it. But don't let it defeat your mind. Sometimes I feel myself slipping and spiraling down the rabbit hole into a pit of despair and feelings of inadequacy...STOP DOING THIS TO YOURSELF. There is absolutely NO point and it will stop your life right where you're standing. Keep moving. And if you can't move physically because of your disorder, never forget that you still have your mind. You can still be you and speak your mind and have opinions about things and desire things and you absolutely 100% deserve nothing but love and acceptance. Which leads me to truth #2...

It is no secret that I have a very deep and personal relationship with God. I have pushed and resisted that relationship this past year through all the bullshit I have had to go through but once again, God is bigger than my stubbornness and broke through that icy cold bitch wall I had built around my heart. For me personally, hearing over and over how I am not good enough has really invaded my mind in the worst way possible. I completely shut down and I am just now waking up from this temporary tantrum of "fuck everybody" but let's be honest here...
It is a cowardly way to live. It is fear based. And it is dishonest to what my heart wants. Don't build a wall around yourself because you are afraid of rejection and getting hurt. So many young women tell me over and over that they feel like no one will ever love them and accept them. My advice to them is simple...Always be an open book. Be gut wrenchingly honest about yourself, your situation, and what you are all about. Don't hold anything back. Holding back will get you nowhere...maybe a one way ticket to lonelyville and that is NOT somewhere you want to be. So my final truth...and I'm just starting to grasp this one...

Love doesn't discriminate. What is meant for you will find you and love you and pursue you and not let you get away. I think it really is THAT simple. Or at least it should be. 
I hope we all find someone who sees our scars and wounds and imperfections and disabilities and embraces them. This life is short and crazy and messy and scary but damn, there is so much to be grateful for. So much to look forward to. So much love to be had.

SO...this is how I cope. With pure and childish hope and by moving forward with the belief that everything will into place like a puzzle and someone will find me and see me and love the imperfections and never let me go. I am an incurable optimist.  This is SO much bigger than me and I know it gets easy to focus on how awful things are now...how lonely you are now...how bad things are now...but that's just now.

Please, friends, keep your heart open. I know so many of your are suffering but don't let it destroy your kindness. Don't let it close you off to love. Don't let it destroy YOU. 

So there it is. I have no medical secrets, no magic pill or tricks that enable me to cope. I cope by loving. And by hoping. I know things don't always work out the way we hope but my God, what if it does? If something as devastating as Dystonia can touch my life then why can't something absolutely amazing and unexpected touch it as well? That's all for now.

As always, I'm here. Please don't be shy or afraid to reach out. 







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. 
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: 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.