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Life as a marionette: Dystonia controls Heather Russell's body

Heather Russell reads to toddlers at the Pleasant Hill Library Tuesday morning. She volunteers as a reader at the library every week. The 25-year-old Hastings woman lives with dystonia. A benefit is planned to raise money to fight the disease. It is Feb. 12.

Heather Russell of Hastings spends her life in a battle against her body.

She wants it to do one thing.

It wants to do another.

And every day, her body wins.

Whether she wants to open a can of pop, or tie her shoelaces, she needs help. Try as she might, her fingers don't listen to her anymore. They ball themselves up into a fist. Minutes later, one will pop free and she'll have control. The muscles in her neck do to the same thing, contracting on their own schedule.

This is 25-year-old Heather Russell's life with dystonia.

"I call it 'the beast,'" she said. "For me, the way I explain it to people is that it's not your body anymore. You are a marionette. The puppet master is making you move and do things your body doesn't want to do."

As she finishes that sentence, a finger pops up out of her first. Suddenly, she has control of it.

"What is this? Seriously!" she said.

While she occasionally has the use of some of her fingers, there's no strength left in them. That makes the easiest of tasks, like opening that can of pop, an impossibility. She calls upon her parents, Renae and Chuck, to help.

"It's degrading, but I keep going," she said. "It's not going to stop me. No way in hell am I going to let it stop me."

The first 20 years of Russell's life were spent as relatively healthy years. She had troubles here and there, especially with nausea, and she had what she calls a minor case of cerebral palsy. But there was nothing serious happening.

Eventually, she ended up in the emergency room because of the nausea, and that's when doctors put her on anti-nausea medication.

Just a few minutes later, all hell broke loose.

"I thought I was in 'The Exorcist,'" Russell said. "My neck was arching. My back. Legs."

"It was hard watching her," Chuck said. "It was painful just watching."

Essentially, the medication brought her dystonia to life. It had sat dormant in her body (for the most part) until she received that dose of medication.

Suddenly, Russell had little to no control over parts of her body. Her hands, neck and right foot seemed to have minds of their own.

To this day, they still operate independently.

"It is very, very mysterious. I get real mad. Real angry. It's very frustrating."

The library

Russell graduated from Hastings High School in 2002. She attended Rasmussen College and earned an AAS degree in early childhood education. Without the use of her hands, though, teaching seems like an impossibility.

So, to keep herself busy and to still have the opportunity to work with area children, Russell volunteers her time at the Pleasant Hill Library where she reads books to children during story time. She also assists during various children's events.

"It's gotten hard for me to continue on with that," she said. "I can't use my fingers to turn the pages anymore, but I need those kids. That's what is keeping me going.

"I'm angry with (dystonia). There are things I want to do. If I could teach, I would. As long as I can work with kids in some capacity, that's fine with me."

Dystonia benefit is Feb. 12

Heather Russell is helping another Hastings resident, Wayne Erickson, organize a dystonia fundraiser in February. Erickson lives with dystonia as well.

The fundraiser is planned to begin at 5 p.m. Friday, Feb. 12, at Gopher Hills Golf Course just south of Miesville.

There are sleigh rides that run from 5 p.m. to 7:15 p.m.

Dinner starts at 6:30 p.m.

A concert by the Midlife Chryslers begins at 7:30 p.m.

The cost is $25 for a single person and $35 for couples.

All proceeds will benefit the dystonia medical research foundation.

Call Erickson at 651-235-3108 or go to http:// to register.