Saturday, June 25, 2016


Anddddd...I'm back. For how long? I don't know. But I have so much bottled up my brain has reached it's maximum capacity so let's work through these things bouncing around in my crazy Dystonia head through my sanctuary-this blog. That I have severely neglected (again) on account of huge life changes.

I have received emails from a lot of woman my age who are...stuck? for lack of a better word. And I am the definition of feeling stuck and confused and overwhelmed so let's strap on our big girl boots and get right to the real-life stuff people with disorders don't want to talk about (me).

I am officially a single mom living on her own. How am I doing this with Dystonia? I HAVE NO IDEA. The grace of God is my only reasonable explanation. I never thought the day would come when I would be able to support (barely) myself and my daughter and take care of her on my own. But I did it. And it's been great! I take pride in my small apartment and I am SO BLESSED with the most incredible toddler out there but wow...what a lonely experience.

Dystonia, by nature, is an isolating disorder. It is so hard to build new relationships when you literally have a messed up brain and can't explain in words that exist in any human language that describe the invisible agony we experience on a day to day basis. How do you explain something you can't see? And if your Dystonia is bipolar like mine, I may feel great one week and the next week I'm forcing a smile at work and answering every "how are you?" with "I'm great!"
Such a lie. But I mean, what else do you say? "Well, I feel like my brain is being squeezed from the inside out and my neck hurts so bad I want to die, how are you?"
Noooooooooo. That doesn't work. So I lie. 

I'm not ok. And it's ok to not be ok. There is something so liberating about talking about ISSUES. Life issues. Single mom issues. Dating issues. Health Issues. Why? Everyone has SOMETHING so on some level we are all connected through out brokenness, yours just may look a little different than mine and I am willing to put mine out there for the world with the hope I may receive just one single email from someone else hurting who needs a friend.

People with Dystonia know how much stress can destroy you. I HAVE to take it easy. It doesn't mean I won't work hard, but I have to be careful. AND I DON'T WANT TO BE CAREFUL. I can't explain in words what it feels like to watch these incredible people do incredible things (real estate) and wish that was you. The grind, the crazy hours put in, the stress and fires to put out...I'm so jealous. I don't know how to get past wondering what and who I could have been and what I could have done with my life had I not gotten sick at the age of 17. It's so hard to deal. I'm pissed some days and other days I'm just grateful I can do what I can do. Feeling like you will never get to be the best version of yourself is a heartbreaking experience. I feel betrayed by my body and brain. My mind wants so badly to go out there and just absolutely destroy a career and be successful but if I go full steam ahead I get sick quicker.
So I'm balancing on a very thin line. My desires and my dream and my reality. "Stay healthy for your daughter. Stay healthy so you can pay the bills. Don't go out tonight and rest instead so you don't pay for it later."
How do you be 25 years old when you can't fully BE 25 years old?

How do you cope? 
Still working on that.

Personal life....has anyone ever accepted someone with a progressive, incurable neurological disorder? What if that sick person happens to be a single mom as well? Oh the negative feedback I get..knife right to the heart. I don't know what else to say about this one. 8 years later and I'm finally ready to meet someone and it's not happening, not for a lack of trying. If they don't accept the health situation, that's a dead end. If me being a single mom is undesirable, it's a dead end. I love me a good love story, so if you have Dystonia and have an amazing spouse who loves you, email me at Give me hope when I really need it. I like hearing people can be flawed but loved. Complicated but cherished. Feeling unlovable is excruciating, so please, share with me your joy and we can celebrate that together. 

So I find myself literally on the curb on the side of the road bawling my eyes out one day over something I have no control over, and I'm thinking, how did I get here? Why me? Why? 
And I sit on my couch and my sweet daughter is sleeping in her bed and I sit here alone in quiet agony sobbing for someone to be sitting by my side. Not talking. Not pretending to understand. Just being there. And letting it be down that it's ok to be weak sometimes. IT'S OK.  

I am a complicated person and I think a lot of people with Dystonia don't feel understood and probably feel complicated as well. So isolation is easier than the rejection and pain (physical pain or otherwise).

All I can think is, now what? Where do I go from here? What's next for me?

Only God knows, and I take great comfort in that. My pain is for a reason. I was put on this earth to share and be myself and contribute what I can-so here I am, contributing. Acknowledging that pain is a part of life and my mission is to find purpose behind that pain. 

Dystonia heart breaks for the hundreds of thousands of people out there hurting. Desperate. Lost. Over it. At your wits end. I feel you, I acknowledge you, and you are not alone. Ever.

We deserved to be loved in all our forms. So if you're reading this and you feel lost and undesirable and broken and so horribly human and flawed it hurts, you are loved by a God who is so much greater than our brokenness. Keep praying. Keep connecting. Keep the emails coming-we are in a very exclusive club and support and love is the only way to get through it. 

If you feel how I feel it...damaged goods...immediately get that out of your head when it happens to pop up. Like, ASAP. Just stop. Because you are worthy, always.

Email me if you need a friend. 
I'm here.
Keep fighting and don't let your broken brain destroy your mind. 
Find purpose behind your pain, let it make you a more compassionate person instead of an angry one. I'll work on that one too.
That's all for now.
I'm always here.

You are worthy, always. 

Friday, March 11, 2016

The Remarkable Good in Unspeakable Tragedies

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

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

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

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

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

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

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

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

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

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

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

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

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

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. 

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.

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 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:

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 lonely you are 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, 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...