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?
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 :
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 keep moving because God blessed me with the perfect reason to keep moving. He works in strange ways.
Keep smiling, friends. Or try.