Staying patient and positive helps Laura Hemesath cope with cerebral palsy

By Ann Passey

April 7, 2005 | Laura Hemesath wishes she could trade bodies with you for just one day.

Hemesath has spastic cerebral palsy, or CP. She has little control over her muscles, which causes them to be very stiff. CP is caused by damage to the brain during fetal development, birth, or shortly after birth. There is no cure.

The symptoms never get worse; they never get better. Things may change, but they will never improve.

If you think your life is hard, perhaps you are just jaded by how easy it has been.

Hemesath needs help with nearly everything she does, everything you take for granted.

She has an assistant with her 24 hours a day. There are 10 women who rotate shifts to provide care around the clock. In the morning certified nursing assistants come to her apartment to help her get ready for the day. In the shower she cannot stand, instead she is supported by a bench. After her shower the CNA helps her dry off, blow dry her hair, brush her teeth, and move back into her wheelchair.

This is where she will spend the rest of her day. Hemesath cannot raise her arms to feed herself. Every meal is fed to her by an aide, starting with breakfast. Drinking can be difficult, and a straw is always mandatory, said Hemesath.

With everything it seems Hemesath cannot do, take a look at what she can.

She moved out of her parents' home at 19. She is now 30, and loves being independent.

"I would never go back," she said. "I love living on my own, it's awesome!"

Her wheelchair grants her mobility. At an even 5 feet tall and 120 pounds, Hemesath is dwarfed by her wheelchair. It rises above her as she sits in it to support her back and head. She has arm and leg rests to keep her limbs comfortable. When you look it her, it's almost as if she sits in a great black throne. She has complete control of her wheelchair and often calls it her "car."

With her hand tight in a fist she is able to grasp the joystick-like steering wand. She steers with accuracy and speed around her apartment, across streets and through stores. She can turn corners and maneuver through doors. She can even take on ice and snow, although she prefers not to.

Rarely is there a day she stays at her apartment. Among her favorite activities are bowling, shopping and skiing.

Skiing, she says, is quite the adventure. She goes with the local group, Common Ground, at Powder Mountain. She sits in a chair with supports all around her that is attached to two skis. She holds tight to a rope, while the person on skis in front of her pulls her down the mountain. The person pulling has almost total control, and Hemesath must trust them entirely.

"It is so much fun," said Hemesath. "It was little bit scary the first time, but I love it."

Same with work. Since the day she moved out of her parents' home she has had a job. Her first was at McKay Dee Hospital in Ogden.

"If doctors or patients needed something, I would take it to them," said Hemesath. "They would put things on my lap, and I would get on the elevator and take it to them."

She then worked at a nursing home.

"I talked to the people. I read them stories and played games. Sometimes I just said hello. They didn't have families that would come in to visit. They were old and very sick, and I gave them someone to talk to. They would talk to me about their families and how many grandkids they had. I kept them company and gave them something to look forward to."

For the past two years Hemesath has worked at Cache Employment Training Center in Logan. Cache is a center for people with disabilities. The range of people that work there is broad; some people have physical disabilities and are confined to wheelchairs, like Hemesath. Some people have mental handicaps.

The program is designed to give people with disabilities a place to spend their day. Some of them, if they are able and want to, can work doing jobs like washing windows and helping with recycling projects. Those that choose not to, or are unable to, can go on field trips around Cache Valley to learn more about their community or work on craft projects. Hemesath typically falls into the latter category, although twice a week she helps with recycling.

"I love going to work," said Hemesath. "I go every day. I love that I have something to do, and it's something I like doing. I don't like staying home, and this gives me a different activity to do everyday."

The hardest part about having CP for Hemesath, is how people react.

"People make fun of me; they think I'm a dodo bird because I'm in a wheelchair. They think I'm not capable of things that I am. People won't talk to me, or make eye contact with me. When they do talk to me, they think I don't understand them, or that I'm only 12 years old."

Despite such frequent ignorance, Hemesath's patience always prevails.

"I have never heard her complain," one of her aides, Melissa Dent, said. "She is so sweet, and kind to everyone. She says thank you for everything, even when you don't realize you've done something for her."

Hemesath says she has to be patient. The CP makes it difficult for her to talk, and very difficult for people to understand her. Often times she has to repeat things three or four times, and that's for people who are accustomed to listening to her.

As she talked to a visitor, she would often cock her head back and laugh as she repeated things several times for her.

CP can also be very painful.

"There is always constant pain," she said, "but most of the time it's not too bad. When I get tired, it hurts worse."

Asked to compare the constant pain to something, with a straight face she said, "It's like getting hit by a car. That's how bad it hurts."

And that's the pain that's not too bad. Hemesath takes 13 pills every day. She attends physical therapy weekly and doctor visits every month. But some days she's not sure it's all worth it.

"Some days I wish I could die tomorrow, and then it would be over," said Hemesath. "Then I would be perfect, with no pain. But I know that won't happen, so I have to be as positive as I can while I'm here.

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