Dystonia is Making My Brain Crazy

My brain is CRAZY!

At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain!

So, what’s that? Well, I have early onset cervical dystonia, a painful, chronic neurological disorder that wreaks havoc on my shoulders and neck and leaves me exhausted both physically and mentally. Then you take the mental exhaustion and mix in some memory fog, a side effect of one of my meds, Valium, and voilà! Dystonia brain.

I say the wrong words all the time. And I mean ALL the time. Especially nouns. I also forget the names of things all the time. “Bring me the ________________.” I can picture it in my mind and I stare, and I stare, and I wait, and I wait, but I can’t think of the word.

It has been a busy week for my dystonia brain. Here’s a peek into what’s been going on.

A few recent sentences:

“Go bring me the umbrella from upstairs.” (laundry)

“Do we want to go to the parade?” (zoo)

“Please go wipe out the car.” (bathroom sink)

And a conversation with my oldest daughter last week:

Me: “Bring me the television.”

Daughter: “What?”

Me: “Bring me the… the… white thing… clothes… dirty.”

Daughter: “Laundry basket?”

Me: “Bingo.”

Have you ever played the game Taboo? In this game people try to guess the noun and you give them word clues to help them figure it out. Imagine being eternally trapped in a game of Taboo. That’s my family’s reality and I am standing front and center.

My husband, God bless him, is a kind and patient man. Our conversations consist of him waiting as the words float around in my brain, just beyond my grasp. He understands how my dystonia brain works, and can figure out exactly what I am trying to convey. He is also quick to move out of the way when I need to throw something because I’ve reached my frustration limit.

My dystonia brain is normal for my children because it’s the only way they have ever known me.

They take it in stride and just correct me. When I am out in public, I tend to speak slowly, and carefully think before I form sentences. I try to not appear drunk, but I am pretty sure I do some of the time.

For the first time this week, my dystonia brain managed it make its way into my dreams. I am an elementary school teacher, so naturally, I always have candy. While trying to ask another teacher for candy I kept asking for a unicorn. I remember the other teachers laughing at what they thought was a joke. When I woke up, the recollection of this dream was not nightmarish. It did not leave me frustrated. Oddly enough, my reaction was quite the opposite. I had to laugh.

I thought to myself, “Well dystonia brain, I was waiting for you to show up in my dreams but I would appreciate it if you didn’t make regular appearances!”

Living with a neurological disorder where I am not always in control of my body has taught me humility. While I still cry when this disorder has me at my wits end, I am also learning to laugh. Sometimes, the best thing you can do is laugh at yourself. I hope my shoe made you laugh a little too. Shoe? Anecdote, I meant anecdote. I hope my anecdote made you laugh a little too.

amber PW contributor About the Author:

Amber is a 39-year-old wife, a mother of two girls, a full-time elementary school teacher, an advocate, and a fighter. Living with celiac disease, vestibular neuritis, and cervical dystonia, Amber lives every day managing pain mixed with episodes of chronic dizziness. All 3 of these diagnoses occurred within the last 10 years. Amber says, “My life has become an insane, often times agonizing, yet amazing journey with blessing too numerous to count. And I love it!”

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