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.