ROANOKE TIMES
Copyright (c) 1996, Roanoke Times
DATE: Sunday, March 17, 1996 TAG: 9603150094
SECTION: EXTRA PAGE: 1 EDITION: METRO
DATELINE: LEXINGTON
SOURCE: SANDRA BROWN KELLY STAFF WRITER
Even before their youngest son, Steve, went to school, Cyrus and Edna Mae McCormick feared something was not quite right with him.
"It was the way he pushed his body up from a chair," his mother recalls.
Still, when Steve was diagnosed with Duchenne muscular dystrophy at age 6, it was ``a crushing thing,'' she said.
The McCormicks had taken Steve to a doctor in Lynchburg for evaluation. They remember paying the doctor, buying Steve some vitamins and stopping to get him a drink.
"And for the next three hours we don't know where we were ... just driving," Edna McCormick said.
Duchenne muscular dystrophy can be inherited or can occur because of a new mutation of a gene. It can't be cured. It causes the body's muscles to waste away until movement becomes impossible. It generally attacks the pelvic and back muscles first; that was Steve's problem when his parents first noticed his difficulty.
His legs continued to weaken. By the time he was in the third grade, his mother was picking him up and carrying him to his desk inside the school so he wouldn't have to walk the stairs.
Then his legs shut down.
Edna McCormick still chokes up when she talks about that day. Steve speaks of it matter-of-factly.
"I was coming back from the restroom, and my legs gave way. Two boys got me to the cafeteria," he remembers.
About half of the weakness Steve experienced that day was due to the flu, which is especially hard on a person with muscular dystrophy. From the third grade on, though, Steve couldn't walk; through high school and two years of study at Virginia Western Community College, he was tutored at home.
Steve turned 37 on March 8; he's lived almost twice as long as expected for a person with his condition.
For the past eight years, it's been a life lived mostly in an iron lung.
The converted den in the McCormicks' house has become Steve's world. The room is barely large enough for someone to move around the machine that forces air pressure against Steve's chest and causes his lungs to breathe.
Each night, Cyrus McCormick cushions his son's ankles and knees and hands with pieces of eggcrate-shaped foam padding so that Steve won't get bedsores. He also wraps Steve's hands with foam so they won't curl inward as atrophied muscles try to do.
Father and son are almost inseparable, especially since McCormick retired from Burlington Industries last March. McCormick prepares his son's breakfast. He trains the home-health nurses who tend to Steve six days a week. He rigged the motor that tilts Steve's iron lung just enough so that he doesn't have to eat lying flat. He revamped the holder for the angled mirror so that Steve can see the television or look around the room.
To his father, Steve is like a beautiful butterfly still trapped in a cocoon - the yellow and chrome iron lung that makes it possible for him to breathe.
"People don't come in to see him because they're afraid of what they'll see," McCormick said. "If they'd just go back and talk with him, they'd change their minds."
Steve McCormick is a quick-witted man with sparkling eyes who has expanded his limited physical world through his thirst for information.
When he could still sit in a chair and turn the pages of a book himself, he spent hours each day reading, mainly about the Civil War. He liked to relate the references to a battle in one book to a map or another book.
These days, Steve must depend on others to read to him or on books on tape that he began getting free from the Library of Congress this month. Now, he's listening to "The Years of Crisis," a book by Michael Beschloss about the early 1960s through the Cuban missile crisis.
Steve likes all periods of history, but particularly the Civil War.
If he could have been part of it he would have wanted to be a division commander like Patrick Cleberne, who was nicknamed the "Stonewall Jackson of the West." Cleberne was an immigrant who moved to Tennessee. He died in the Battle of Franklin (Tennessee).
If Steve's not being read to, he's likely tuned to C-SPAN, the news and government television channel that has taken him through the Republican presidential primaries. He now concedes his initial observation that Steve Forbes "is a nut" might have been too harsh.
Sliding glass doors, installed so that the iron lung could be brought into the house, also give Steve a large window to the outdoors, where birds feed and children play. It's an outdoors he had not visited in almost a decade until Shelby Ford came to care for him.
It had been almost as long, too, since he'd been in the living room of his own home.
Ford, 29, is one of three nurses from Guardian Angel Nursing Care of Fairfield who feed, bathe and read to Steve from 8:30 a.m. to 4:30 p.m. six days a week. She was scared of the iron lung when she first came to work - "I'd never seen one except in a storage room at the hospital" - but she and Steve are now such good companions that in their heart-to-heart talks it's hard to tell who is taking care of whom.
He forgives her for almost turning over the iron lung one day; she doesn't mind that he laughs at her efforts to pronounce names like Nebuchadnezzar when she reads the Bible to him.
Ford, Steve says fondly, is a "pushy broad" who tries to run his life.
Soon after she came to work last May, Ford suggested a picnic outdoors. Steve's parents were scared of the idea, but Steve wanted to try.
One day last August, Steve's father carried him out to the back yard, placed him in a recliner-chair borrowed from a hospital and hooked him to portable oxygen so he could breathe.
Steve and Shelby Ford sat and talked for more than three hours. They plan another outing this summer.
Being outdoors was a nice treat, Steve said, but not something he had yearned for as much as a person who is able to walk might expect.
"You can't miss what you've never had," he said.
When he could still get around in a wheelchair, a favorite Sunday outing was an afternoon of searching for Civil War tombstones at the historic Stonewall Jackson Cemetery in Lexington.
He did attend his high school commencement ceremony, where he graduated with honors.
But the last time he went out to a movie was to a drive-in theater to see "Coal Miner's Daughter," the biography of country music star Loretta Lynn. Steve also has a passion for country music, especially the songs of Alan Jackson.
Because his illness progressed gradually, Steve said, he had time to adjust better than someone suddenly paralyzed from a car wreck or, as in the case of actor Christopher Reeve, in a fall from a horse.
"He's got pretty good spirit, too," Steve said of Reeve, whom he has seen in television interviews. "That's what it takes. You can make it. Nothing is impossible.
"It sounds like bragging...but you can't live depressed," Steve said.
Faith helps, too.
Steve "was led to the Lord" after watching a movie about the persecution of Jews in Hitler's Germany, his mother said. Right after that, he got pneumonia and couldn't sleep for six days and nights.
"Steve began worrying he wasn't saved," she said.
Psalm 116, in which a man saved from death praises God, "helps tell who I am," Steve said.
Steve has been an inspiration, his mother says. He's also a miracle, according to his father.
"We was going to lose him at 16. We was going to lose him at 20," Cyrus McCormick said.
Despite his disease, Steve was never in the hospital until he was 23, when he almost died because mucus had clogged his lungs. He spent 26 days at the University of Virginia Medical Center and came home with the iron lung to aid his breathing. He is one of about 300 people in the country using the device.
The iron lung makes breathing more comfortable than other forms of ventilation, but it is not very popular because it is confining.
The illness has taken a toll on Steve's body. His spine is severely curved, and his torso is as slight as a young boy's.
Twenty years ago, he decided to grow a mustache "so I wouldn't look 10 years old," he said.
Family members and friends joke that he has no trouble appearing older, however. He's a political conservative with his head in a history book.
"They call me an old grandfather," Steve said.
He does like a routine.
Breakfast of eggs or oatmeal is at 8:30 each morning. Lunch, at 12:30, consists of mashed potatoes, applesauce with bran and pureed carrots, eaten two spoonsful out of one dish, then the next, and then the next.
"He always eats them in order," Ford said.
When he drinks water, he counts the sips, she said. "It's always four sips."
Dinner of fish or chicken and maybe broccoli, all pureed, is eaten in the same controlled way.
If Steve chokes on a food, he never eats it again. Green beans are off his list.
The swallowing movement is one of the few Steve's body has left.
Morning hours, after breakfast, are spent reading - always the Bible - brushing his teeth and shaving. After lunch, Steve's dad carries him into his old bedroom and puts him on the bed for a bath.
The period of transport - about one minute - is always tense because Steve has no way to breathe from the time he leaves the iron lung until he is hooked up to the ventilator in the bedroom. He is again without oxygen for the time it takes to move him from bedroom to the living room.
"When you watch someone who isn't breathing, you don't breathe," Ford said. "I almost passed out the first time he was moved."
Until Ford arrived, Steve hadn't been in the living room in this decade because there was no place where he could partially recline. Ford initially used the same hospital reclining chair that Steve used on the jaunt outdoors. But in addition to being borrowed, it was ugly, Ford said. She began to search for a way to get Steve a recliner that would look appropriate in the family living room.
Judy Shine, then manager of the Holiday Inn in Salem where Ford's mother worked, got her company, American General Hospitality of Dallas, to donate $500.
With that and a $50 discount from Schewel Furniture, Ford bought the beige recliner Steve now uses for several hours each afternoon.
Not just Steve's life has been changed by Ford. From the time Steve was confined to the iron lung until election night last November, the McCormicks had not been out together. One always remained home with Steve.
Ford stayed the night of the election, and the McCormicks went to a gathering for a relative who was a candidate. Ford also stayed so they could go to another son's house on Christmas Eve.
The McCormicks haven't asked for the additional freedom; it's been orchestrated by Steve and his nurses.
Cyrus and Edna Mae McCormick don't ask for things, and they have always paid their own way. But they don't have much extra money.
As retirees - she worked at the cafeteria at Lexington High School - they live on a fixed income. A chunk of their income, $391 a month, is spent on health insurance that also covers Steve. Steve is eligible for help from Medicare and Medicaid, but they don't always cover everything, Cyrus McCormick said.
Steve's regular expenses include $1,700 a week for nurses, $1,600 a month for the iron lung and $500 a month for the portable oxygen.
Cyrus McCormick has become an expert in filing insurance claims, learning as he did it, the way the couple said they have had to do about everything connected to Steve's care.
"We learnt from day to day," Edna McCormick said. "I figure the Lord gave him to us; He'll give us the knowledge to take care of him."
LENGTH: Long : 223 lines ILLUSTRATION: PHOTO: STEPHANIE KLEIN-DAVIS/Staff. ``You can't liveby CNBdepressed," says Steve McCormick, pictured in the reflection of the
mirror above the iron lung he's lived in since 1988. 2. The iron
lung (above) forces air pressure against Steve's chest and causes
his lungs to breathe. 3. Steve's father and mother (far right photo)
call their 37-year-old son both an inspiration and a miracle. 4.
Nurse Shelby Ford (right) is one of three nurses who bathe, feed and
read to Steve six days a week. Here she is brushing his teeth. 5.
With the help of a donation and a furniture store's discount,
Steve's nurse Shelby Ford was able to buy a recliner for the
McCormick family living room (above). The recliner allows Steve,
while hooked up to portable oxygen, to venture out of the iron lung
in his bedroom for several hours each day. 6. The iron lung takes up
the better part of the space in Steve's bedroom (left). 7. Civil War
history was and is one of Steve's passions. When he was still
ambulatory, he spent time with a group of Civil War re-enactors
(below) and enjoyed searching for Civil War tombstones at the
historic Stonewall Jackson Cemetery in Lexington. color.