By Paul Dunn The Daily Reflector
Greenville, NC
Sunday, September 04, 2005

Jill Hollis' hand was wasting away.

A 2003 Christmas picture of her showed it clearly, a well between her thumb and index finger where muscle used to be. A glance at the flesh on her hand confirmed the photograph's image; it helped explain the trouble she'd been having opening jar lids.

It was early 2004.

After initial medical tests and consultations with doctors proved inconclusive, Hollis began doing her own research to figure out what was going on. Her acquired knowledge stunned her.

She verbalized as much during an April 2004 visit to a local neurologist.

"I remember saying to the doctor: 'Do you know what my greatest fear is? It's ALS,'" said Hollis, 44, a Greenville resident since 1989.

After consulting with a neurologist at Duke University Medical Center in May, Hollis was forced to admit the unthinkable: She had Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig's disease.

At first, she resisted what her intellect told her was true. She continued to see doctors with the faint hope that she'd eventually awaken from a bad dream. Then one day in the East Carolina University Brody School of Medicine parking lot, reality burst the dam that had held back her tears.

"I couldn't find any change to put into the parking meters," she said. "That was the straw that broke the camel's back."

She called her husband Cliff Hollis to come meet her, and together they sobbed inside the parked car.

There is no cure for ALS.

According to several Web sites, nerve cells that control muscle cells are gradually lost in ALS victims. In most cases, the cause is unknown. As the "motor neurons are lost, the muscles they control weaken and then fail to function completely, leaving the victim paralyzed." Death usually occurs from respiratory complications within 3-5 years.

For Jill, Cliff, and their two children, Megan Bostic, 19, and Joel Bostic, 17, the past year has been a roller coaster of emotions. On her relatively infrequent bad days – when she dwells on the future – Hollis spirals downward into depression that she said takes days to overcome.

"For me, as simplistic as this sounds, I try to take one day at a time," she said. "It took me a long time to be able to focus on today, and I've come to realize that if I look too far ahead, I'll miss today."

A bit more than a year after her diagnosis, Hollis is often tired, walks with braces on both legs and her hand coordination continues to deteriorate. But the disease has progressed more slowly than she'd anticipated, and for that she thanks God and her soul mates at Greenville Christian Church.

"I thought by this time, I would be in a wheelchair," she said. "The weird thing is that it's so different in everybody."

Hollis' travails have brought her closer to others in the area with similar conditions. She periodically e-mails former ECU head baseball coach Keith LeClair, who was diagnosed with ALS in 2001, and she's met others who similarly inspire her to keep the faith.

Harold Hill is among them.

The 45-year-old La Grange resident has lived with ALS since 1983, far outdistancing the typical 3-5-year life span of many ALS patients.

"Yep, I think I've set the world record," he said with a laugh. "Now, I'm hoping to be around for another record – a cure."

Hill, who has been confined to a wheelchair since 1990, moved back in with his parents 18 months ago after attempting to live on his own. The strain became too great, he said.

"It was a struggle living by myself," he said. "Between having enough money and finding someone good to take care of me, it was just too hard."

Twenty-two years ago, Hill was working as an electrician in a nuclear power plant in Apex when his coordination began failing him. His co-workers began noticing Hill's unsteady gait and periodic tripping, though no objects were in his path.

Then, one day an incident at the plant got his attention like none before: He dropped a wrench while working on a plant transformer and couldn't pick it up. For the next three minutes, Hill's hands were numb. He could feel nothing.

So he went to see his family doctor. It was August 1983.

After a series of tests for other maladies proved negative, a neurosurgeon finally diagnosed ALS. Hill had 3-5 years to live, a Duke Medical Center doctor told him.

But in an unusual twist of fate, that mis-prognosis would help shape the next 15 years of Hill's life. Though his day-to-day existence was about to change dramatically, the then 23-year-old and his fiance, Anita, decided to wed.

But not before Hill offered her a way out.

"We loved each other a lot, and I gave her the chance to get out of the relationship if she wanted," Hill said.

Anita remained with Hill for 15 years, but left when it became obvious that her husband's condition would continue to worsen, and that she'd be unable to care for him.

"I think, in the beginning, she believed that after 3-5 years, she'd be a young widow," said Faye Carraway, Hill's sister and caretaker for 17 years.

Hill laughs at the irony.

"She didn't know I'd be around that long," he said.

Though Hill's clarity of speech has suffered in the past few years, he remains remarkably upbeat, a disjointed, quirky laugh frequently punctuating his sentences. Like Hollis, Hill relies on his faith to pull him through.

"My main thing is that I have faith in God, and God is my main doctor," he said. "Why dwell on things that happened that I can't control?"

In the meantime, Hill will continue to see a Raleigh neurologist once a year, a family physician every six months and a pulmonary doctor every four months. Carraway, 49, who's married and lives in Grifton, will be by his side the whole way. There's no other place she'd rather be.

"Harold has taught me to go the distance in life, no matter what," she explained. "If you can do it, do it. You can do anything you put your mind to."

Hollis embraces a similar philosophy. A 10-day mission trip to the Ukraine in October helped her devise a plan for the rest of her life. During the trip, she and others helped a hearing aid company fit hearing devices to children in orphanages for the deaf.

Though she saw poverty and deprivation the likes of which she may not encounter in Pitt County, Hollis, nevertheless, feels she can make a difference without traveling around the world to do it, she said.

"The trip was an amazing experience, but there are opportunities to make a difference in people's lives right here in front of me," said Hollis, a Pitt County District Court paralegal before her diagnosis. "I want to help people get closer to God. That's the legacy I want to leave."