|07-07-2002, 04:52 PM||#1|
Join Date: Jul 2001
Winner never says 'Why me?'
July 7, 2002
Winner never says 'Why me?'
Mooresville man's positive attitude despite crippling disease earns him state recognition
By Amy Hillenburg,
Rhonda Hulka asked her future husband, Dean Egler, why he was so accepting of the spinal muscular atrophy that was crippling him when she met him in college.
"Don't you ever ask, 'Why me?' Don't you get angry that you have to struggle so hard to do what others do so easily?"
His reply shocked her. "Why not me? You can always find someone worse off than yourself."
Was she afraid to marry this man who had become her best friend?
"I wanted to know what to expect, if he was going to die and how he would end up. I decided to learn everything about his disease. Dean doesn't live in a handicapped world, so he doesn't dwell on his weaknesses," Rhonda Egler said. "I probably know more about his condition than he does."
The Mooresville couple have been married for 19 years, and their three healthy children are a testament to the young man who decided to "live a normal life."
He was honored recently with the state Muscular Dystrophy Association's 2002 Indiana Personal Achievement Award. Egler said when they called to tell him about it, they asked, "Aren't you excited?" Of course he was flattered, but the 39-year-old engineer said he doesn't understand why someone would want to honor his life. He feels that anyone in a physically challenging situation "just deals with it."
But indeed, his life is special, according to his wife. "There aren't many muscular dystrophy victims who marry, work at a regular job, have children and do community service," she said.
Egler said he understood why some people with disabilities go to support groups, but he doesn't attend them.
"It depresses me to hear other victims talk about their physical problems and their trips to the hospital. There are too many frustrations with this disease as it is," he said.
Rhonda Egler said that after they were married, Dean was struck by the fact that she prayed for personal things and had regular devotions. He soon claimed Christ as his own and has leaned on his faith many times. The couple attends Mount
"God doesn't make mistakes," Dean Egler said. "You can't ask him the reason why he made you a certain way - He's the potter, and I guess I'm what you'd call the 'miry clay.'"
Started on his feet
There are actually 44 different muscular/neural conditions under the muscular dystrophy umbrella.
Dean's brother Vince has a more severe form of the disease and is worse off physically. His two younger brothers are not affected.
The diseases are transmitted by two parents having the same recessive gene, and in Dean's case, it can't be easily pinpointed in the family.
When the Eglers married and considered having children, there were no conclusive tests to determine if Rhonda also had the gene. They decided to plan for kids despite the odds and accept the consequences. Doctors told the couple that Dean Egler would probably live a normal life span, even with his limitations.
When Dean Egler was a child, he could walk and ride a bike on flat territory, but when he reached junior high school, his legs were so weak that he decided a wheelchair was less trouble than trying to walk.
"It was hard for me to tell my parents that I couldn't walk anymore. I didn't want them to think I was giving up. It was also difficult trying to fit in as a freshman - you're so sensitive at that age to how other people look at you. But after a while, my friends became used to the wheelchair so things were easier," Egler said.
Rhonda Egler said the disease moves upward in the body, so her husband is now struggling to maintain strength in his arms. Calmly, he explained that his death would probably come from respiratory complications.
"He couldn't lift the kids when they were babies," Rhonda said. "He can't mow grass, and he drives a specially designed van. It takes him so long to get ready in the morning. Dean doesn't 'just change clothes' - he gets dressed and he's in that outfit the rest of the day."
She said vacations are also difficult, although their van is customized for passengers in the back.
Egler said not being able to participate in physical challenges doesn't rob him of his joy as a father. He is content to watch the children playing, riding bikes or helping him maneuver his radio-controlled cars. He takes them to soccer practice, attends school functions and taught his son to play golf.
In college, Rhonda Egler fell in love with his sense of humor and positive attitude, but often, she says, those two characteristics are severely tested in everyday life.
At church, Dean Egler found another person with disabilities, who talks to him, and Rhonda said the congregation is supportive of his situation. He is an active church member and does tasks that fit his abilities.
Egler is an electrical engineer with degrees from Vincennes University and IUPUI. He's worked 16 years for AES Interconnects on the west side of Indianapolis and said the company recently installed a remote-controlled door for him.
"My co-workers are understanding about my condition, and people do help you out. But I always have to deal with change because the disease is progressive. It takes years for things to happen."
Cold temperatures bother Egler, and he often props his feet up to keep them from swelling. Some environmental barriers are unavoidable.
"Every house has steps or the door isn't wide enough. If you have to take a bathroom break, you might not find a restroom with a big enough entrance," Egler said. "There is also job discrimination for handicapped people. Small companies aren't able to insure you, and the big companies are reluctant to hire you. I'm an engineer, so I have the ability and the knowledge - it just takes someone who will give you the chance."
Rhonda Egler said there are extra costs for such things as vehicle customizing and health insurance, which runs about $800 a month for major medical. The price of a new, motorized wheelchair has risen to about $10,000. Her husband was lucky enough to find a used one.
These day-to-day frustrations are annoying, but Dean Egler said he is thankful for his life, his job and his family.
Rhonda Egler smiled at her husband and gave him her highest praise: "Dean is just a normal guy who happens to be sitting down."