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 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 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?
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?

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

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.

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.