You’re Tough Sometimes, Dystonia, But Here’s Why You Won’t Win

Dear Dystonia,

You have challenged me so much throughout my life. Honestly, you still do today. I am so angry with you because I don’t understand why I have you and why you won’t leave my body alone. You make me feel so alone. You turn my world upside down sometimes. It’s hard going day to day not knowing how I will feel or what will happen with you.

I didn’t officially learn I had you until I was a junior in high school, but thanks to you, I endured endless tests and doctors appointments. I’ve also missed out on school events throughout my entire life.

All my life, people have said to me, “Chelsi, God has plans for you!” I believe this is the true, but there are days when I question, “What plans? Tell me what those plans are!” Because sometimes, it feels frustrating, confusing, and downright hard.

Dating seems impossible with you. At 23, I’m seeing all my friends dating, having boyfriends and getting married. Why can’t I date or have a boyfriend who truly sees past you? I can’t help but wonder if I ever will. Will someone truly love me despite you and all the frustrating days ahead you may bring? Will they love you, Dystonia, or hate you? Will they see strong when they see you in me, or will they see broken, lost and confused?

There are so many questions I have for you. Why do you have to make my job so hard? Why do you not only frustrate me but others around me who love me? People haven’t always been nice to you, you know. “Do you have Parkinson’s?” “What’s wrong with you?” “Look at her! She is shaking!” “Why does she do that?” You have hurt my feelings to the moon and back, but still I go on.

As many times as I have cried over you, gotten mad, got frustrated, spilled my drinks or food all over myself, one thing I haven’t done is let you take control of my life. Let’s be honest with each other — there have been times I have wanted to just let you have the win. But every single time there is someone pushing me. “No! You keep on going.” I once had a math teacher in high school who would tell me every single day, “You know, Chels, one day you will see that dystonia is only going to make you stronger in life.” How true that has proven to be.

Screen Shot 2015-03-27 at 5.29.35 PM As much as I hate you, Dystonia, without you I wouldn’t have been in a career I love, Early Childcare. You have brought so many wonderful children into my life who truly see past you. They are my inspiration each and every day. They see past you and love past you. They fight with me every single day. You have also brought me some amazing, long-lasting friendships I may never have experienced without you.

So bring it on, Dystonia. You can take me to the lowest of times, but I won’t let you win. I just won’t! It’s not in my blood. I have come too far and fought with you too hard to give up the hard fight now.

One day, we will find a cure. But until we do, we must keep on keeping on!


The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Find this story helpful? Share it with someone you care about.

Related to Dystonia

To the Mean Stranger Who Judged My Parenting Abilities, Thank You

We were exhausted — tired and emotionally raw. Our little boy was finally stable and home from the hospital. He was in so much pain; I was actually surprised and relieved he’d finally fallen asleep. He was almost 2 years old and had given us quite the scare. His feet seemed to stop working, and [...]

Woman With Dystonia Writes Perfect Response to Disrespectful Restaurant Employee

Brittany Adler could have been angry when she was seemingly ignored at a restaurant in Miami, Fla. She could have caused a scene when an employee behind the register gave her a funny look and walked away from the counter instead of making an effort to understand her while she was placing her order. She [...]

This Was the Perfect Way to Say Goodbye to High School

With one month until graduation, 20-year-old Dane Porter made his drumming debut. And it was percussion perfection. The senior, who has Down syndrome, was invited to play with the Waxahachie High School band at a pep rally in April for a Special Olympics meet. Watch that performance below to witness some serious joy. “Dane has taught me [...]
the author's daughter Pip

A 5-Year-Old Made Me Cry

Today I had a big one – one of those ugly cries where what happened is worth crying about, but it’s almost like you’ve bottled up months’ worth, and this one thing sets ‘er all off. Today a 5-year-old made me cry. Keep in mind Pip, my younger daughter, had her eye patch on, and I [...]