Overcoming hepatitis C: Couple forges ahead

Hepatitis C can lie dormant in the body for years before showing range of symptoms

By Libby March

NORTH MUSKEGON, Mich. (AP) — When he was diagnosed, Steve Neading told his wife to leave him.

It wasn’t because he didn’t love her. It was because he did and he didn’t want her to suffer.

Steve and his wife Carla Rae Neading had learned that he has hepatitis C and he didn’t want her to live around it.

Carla Rae said divorce was not an option.

“I said, ‘That ain’t happening,’” she recalled. “I married you under the vows, with God, and it was forever. Forever and ever and ever no matter what.”

Steve and Carla Rae’s “forever” isn’t easy.

At first glance, the North Muskegon couple could be any hardworking middle-class couple. Steve is thin, his hair and mustache dotted with gray, usually clad in a pair of blue jeans with a weathered Harley-Davidson jacket. Carla Rae is pretty with a wide smile and kind eyes, her face framed by tumbling dark hair.

It’s when you look a little closer that you notice the difference. It’s the way Steve’s shirt hangs a little too loosely and the pain in his eyes, sharpened by years of battling chronic
exhaustion. It’s the brilliance of Carla Rae’s smile, which fills the room with its warmth, sometimes a little too brightly.

And at night, after he goes to bed, her eyes mirror Steve’s in sharpness.

Sometimes Steve sleeps all day. He needs extra painkillers, which Carla Rae can’t usually give him, and they argue. Money’s tight. Sometimes Carla Rae cries in the shower, where Steve can’t see.

“I took a lot of showers. I cried a lot at first,” Carla Rae said. “But now I just deal with it. We relish the good days, we deal with the bad days, we shut the world out. We just deal with it.”

When the Neadings got married in 1999, they had big plans. Steve was a workaholic, tirelessly laboring at Stop-N-Look, their used car business. He and Carla dreamed of a big house, a working couple’s paradise, tucked in the woods across a little bridge behind the car lot.

If you cross the bridge now, you’ll see the remnants of yellow tape canvassing the spot where the house would have been.

“I don’t think about nothing the same way anymore,” Steve said. “Everything’s different. Everything.”

He can’t work anymore. In 2007 they lost the car lot. Last year, Carla Rae lost her job.

But Carla is the sort of woman who moves mountains, and she has moved them. She’s a mother, a grandmother, worker and a volunteer.

When it comes to Steve, she’s a lion. For the past six years, she’s lived for both of them.

Carla organizes an annual blood drive to support Steve’s need for blood and that of those like him. She handles his medication and manages a special diet that walks the line fending off his diabetes as well as the hepatitis.

She keeps meticulous track of his medical history and carefully lays out his pills for the week, cocktails of prescriptions taken several times each day. She pays the bills and keeps up the house. She’s always got an eye and an ear on Steve, ready to crack a joke just when he needs it most.

She works part-time cleaning houses, alert for the ring of her cell.

In the past, she’s gotten calls that sent her flying to the hospital, ready to stand vigil at Steve’s side and battle anyone she thinks may be misled about the best way to treat him.
Steve’s internal medicine doctor, Dr. V.K. Das, said Carla Rae has saved Steve’s life. Multiple times.

Steve has been stable for a few months, but sometimes the daily struggles are the hardest.

On one November afternoon, strife came like a whisper. Wringing his hands, Steve paced their home for two hours, his face drawn tight under the brim of a battered baseball cap.
Standing next to him, Carla Rae urged him to take a break, her face serene against the tide of Steve’s frustration. He had lost his keys.

They turned the house upside down, combing through cars, closets, drawers and coat pockets. When they finally gave up, Steve slumped into a kitchen chair, his face blank. Carla Rae gave him a Xanax, one of his many prescribed medications, but he continued to worry about the keys, rising in the middle of the night to check one more spot.

“Makes you feel stupid,” he said as he searched. “Stupid, stupid, stupid.”

The Neadings have lived with the slow erosion of Steve’s body for 12 years. In 2000, his vision clouded with acute multifocal placoid pigment epitheliopathy. In 2006, they found out he had liver failure.

It seems a small thing — a hitch in everyday life — to misplace a possession. But for Steve, it’s evidence of the disease that attacks not only his liver, but also his mind.

Since the liver no longer regulates them, certain neurotoxins slip into his brain. The worst is ammonia. It whittles down the attention span and causes short-term memory loss.

Before the hepatitis, he was not a forgetful person. But now Steve often loses things and forgets little details.

They live day to day, babysitting their grandson Ronnie and taking time with him and Carla’s daughter Jenni. On good days, Steve twirls Ronnie around to Little Ritchie records and tinkers with cars. Carla Rae teases Jenni, mixes up cakes to keep weight on Steve and talks blithely on the phone with loved ones near and far.

She is the glue holding everyone together and it is her love for God and Steve that keeps her strong.

When things look especially bleak, they go to God. The sanctuary at St. Paul’s Episcopal Church in Muskegon, which Carla Rae attends every Sunday, is their haven. At any time of the day or night, they slip away to its grand arches, sitting under its brilliantly stained windows in the dense silence.

“Praying is the biggest thing,” Carla Rae said. “One of the hardest parts of this whole thing for me is to know I don’t have no control — and I like to have control. I couldn’t make peace with it, so I gave it to God and God has it.”

Hepatitis C can lie dormant in the body for years before showing symptoms. When Steve was first diagnosed, Carla Rae was angry, especially since they are not sure how or when he contracted it. It is transmitted intravenously or sexually, but neither of those are possible causes in Steve’s case. They suspect it may have happened in blood-to-blood contact from fights he had while running with the Hell’s Angels in California back in his 20s. But they don’t really know.

Steve was so sick she had little time to think about it, so her anger passed. She wanted to try anything and everything to support him.

The annual blood drive Carla runs is an attempt at just that. Donations at the blood drive are mostly distributed locally. The night before, Carla will work deep into the night making homemade soup for the drive. She’ll be up before daybreak the day of the drive to prepare, setting up chairs and coffee and food.

Steve’s prognosis is up and down. During his last visit with Dr. Das in early November, they learned he does not qualify for a new liver. Organ transplants are determined by the medical state of the distressed organ, and though Steve experiences chronic pain, fatigue, and memory loss, his liver is not sick “enough.” There is a possibility that someday his liver will recover, but what he has lost mentally will never return.

So now it’s about finding normalcy. Carla Rae keeps Steve as healthy as possible and they live day to day, fighting the bad days and embracing the good ones.

“From here we just go forward,” Carla says simply. “You know, we’re like the trees in the backyard, we’ve got to bend in the wind.”