My Dystonia Fashion Statement

What do you never leave home without?

Is it a purse? Your wallet? Keys? Yeah, I have all of those things too. But September through May, and dozens of other days outside of those months, I always have something else. I never, ever leave home without a heated neck wrap.

While women collect purses, I collect neck wraps. Currently, I have six. Five live at home and I have an emergency one that lives at work. Like purses, mine range in colors, sizes, shapes and have different contents inside. But the similarities end there. My neck wraps are not as fun as my purses. They are a necessity for me because I have cervical dystonia.

Cervical dystonia is a neurological disorder that causes my shoulder muscles to stay in a semi-permanent shrug position. This shoots pain up my neck and limits my ability to turn my head. So, my wrap serves two purposes: to provide heat to my neck and shoulders and provides weight to help me keep my shoulders down. Per my neurologist: “If it is less than 70 degrees outside go nowhere without one on, no matter what!” And I do. Always. One even gets packed when I head to the beach in the middle of summer, just in case.

Wearing one consistently for five years, I sometimes get asked questions and that’s great. I always encourage people to ask questions because it is a way to raise awareness.

Some regular questions:

What do you call that thing around your neck?

A: It’s my tube.

How often do you heat it?

A: When I am teaching: right before I leave my house for work, during my special (10:30), at lunch (12:00), after school (3:30) and then countless times in the evening. Pretty much as soon as it cools off, back in the microwave it goes.

Why do you have so many?

A: Because I have a dystonia brain which means my memory sucks. I can’t keep track of anything. Anything. My life would be so much easier if I could have five phones too!

How long do they last?

A: Until I burn it in the microwave. That scenario plays out like this: “What is that burning smell? It’s horrible, I can’t escape it.  Oh wait, it’s me.” This usually occurs around 6 months. And the smell is SO much worse than burning popcorn!

What is inside?

A: Dried rice works best for me. It molds well to my neck. I do have one that has dried corn in it.

Do you ever freeze it instead of heating it?

A: NO, NO, NO! Cold is the worst possible thing for my dystonia. The mere thought of a cold tube around my neck makes me shudder.

Do they ever break?

A: Only at the worst possible times. Like when you are out grocery shopping and a pile of dried rice falls to the floor in the baking aisle. Try explaining that one to an employee. Truthfully, they rarely break and I am hard on them.

The most common question asked:

Your wrap is so cute and feels so soft. I bet this feels really good when it is all warm like that?

A:I know its original purpose was to provide soothing heat for someone (who doesn’t have chronic pain) after a rough day. For me, it is a necessity to maintain a full-time job as a teacher and a mother. It is also cumbersome and often uncomfortable. It’s not something I would say I enjoy lugging around my neck hour after hour. But it is a necessity.

And the one question that I ask my family at least five times a day (often yelling so everyone in the house can hear me), “Does anyone know where my tube is? I can’t find it! Again.”

amber PW contributorAbout 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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