Vigil of Hope

 Angela Sanoski froze behind her white veil. She'd repeated all the words, promising to have and hold Neal Verge from this day forward, for better or for worse, for richer or for poorer, in sickness and in health and to love and to cherish him. To be his wife.

But behind the flickering glass of a home movie, the rhythm of the ceremony missed a beat and a few long seconds passed. Angela turned to the white-haired minister but said nothing.

"'Til death do us part," he repeated.

The authority returned to her voice.

"'Til death do us part," she said.

What could be perceived as wedding day jitters was something more tragic and devastating, a prelude to a troubled marriage for Neal and Angela, trouble that has nothing to do with their love for each other. A few years into their marriage; even when she watched the video and the date, Oct.23, 2003, stared back at her; Angela couldn't remember saying her vows or kissing her new husband. But watching made Angela happy, said Diane Sanoski, her mother.

"Do you remember your wedding?" Diane would ask Angela, video in hand.

Angela shook her head, "no." Every day.

Before the marriage, Jim and Diane Sanoski sat their daughter and her fiancé down to voice concerns. They wanted to make sure getting married was wise, given Angela's growing medical problem. At first, she became absent-minded and uncoordinated, forgetting appointments and locking her keys in her car. It happened so often it became a joke. Then when she drove her car off the road and didn't know why, she started riding her bike to avoid another accident. Diane and Jim suggested to Neal and Angela that they delay the wedding until they learned why these things were happening. But with the same hope Neal brings to Winship Green Nursing Center in Bath to visit his almost comatose wife, the young couple set forth on a life together.

"I never had cold feet," said Neal of his commitment to Angela. "At that time, I never thought it would be a life-or-death problem, but it wouldn't have made a difference."

After a year of daily viewing, the video began to upset Angela, said Diane. She doesn't watch it anymore. But if Angela forces only one smile a day in her silent, motionless existence a feat that on most days is impossible she saves it for Neal, who maintains her art studio in his Edgecomb home for when she gets better. On the weekends, he carries her from the nursing center to whatever vehicle he's driving; his car or a handicapped accessible van he bought especially for her; and brings her to their house, which she's never been able to walk into herself.

"I have no idea what she remembers now or what she's thinking," he said.

"But I don't have any regrets. I'm happy knowing she was happy on our wedding day. On that day, at that time, it was the happiest day of her life."

What once was Melissa Jones, Angela's sister, remembers her as an energetic and mischievous girl, an adventure seeker right up until she mysteriously lost the ability to talk. The sister Melissa describes played basketball until she couldn't walk anymore. Then her legs, despite the medical world's inability to explain it, became too stiff to move. Then the coordination to feed herself was slowly ripped away before finally, Angela stopped moving and talking. Now Angela Verge, 29, can scan a room with her eyes. Family members see emotions in her facial expressions, but that's it.

"Trouble," said Melissa, sitting with Angela in a lounge area at Winship Green. "She was into everything. We always laughed about the time she ripped the head off one of my dolls. At one and a half, she was sleeping in the bottom of a bunk bed, because we couldn't keep her from climbing out of the crib."

Angela is four years younger than Melissa and decades younger than most of the other inhabitants of Winship Green. Much has changed about Angela since her days escaping her crib, winning free-throw competitions and reaching the state cheerleading championship while a senior at Wiscasset High School. These days, she spends a lot of time in a reclined wheelchair, sitting as still as the night. Her condition has baffled doctors, and aside from infrequent checkups, they've given up trying to diagnose the affliction. According to top medical minds from across the country, there's nothing left that can be done.

In the Winship Green lounge, though, there is plenty of hope. Melissa, a teacher at Bath Middle School, visits almost every Wednesday afternoon and sometimes Saturday mornings. She takes her place in a circle of people who rarely leave Angela to battle her devastating ailment alone. If Angela is trying to break out of the prison her body has become, there's almost always somebody there holding her hand in case it happens. Melissa hopes that someday her daughters, 3-year-old Lindsey and 5-year-old Kelsey, will know the Angela she remembers.

"Lindsey was born when Angie was at (Massachusetts General Hospital), when we didn't know if she was going to make it or not," said Melissa. "You kind of lose that sister bond, having her play with my kids and stuff like that. This is all they know of her, outside of home movies and pictures."

One of those home videos shows a woman with curly, black hair and a mint green suit flipping through the pages of a graphic arts portfolio part of Angela's senior art exhibit at Pensacola Christian College. The video provides a glimpse of the life Angela had in mind for herself, the life her family and caregivers are convinced she's fighting to regain.

"She does great work," whispers a black-haired woman before noticing a man taping her with a video camera. She leans toward the lens. "Angie, you do great work."

Jim Sanoski's hand reaches into the frame and points to a photograph in a black binder.

"We went to Mount McKinley in Alaska," he says. "That's where she took that picture."

Against a soundtrack of mingling artists, the camera pans across Angela's creations: a painting of a tree frog, a picture of the sun setting over the Japanese coast, fine stationery, Christmas cards and advertisements. It's the work of a creative, disciplined mind. The camera returns to Angela, a polished, poised woman. She mingles with guests, wearing a black suit, perfect makeup and neat blond hair. Her eyes are purposeful. The date at the bottom left corner of the screen reads Nov. 18, 2001. One by one, Angela introduces classmates and instructors to her father, thanking many of them for helping her through four years of college. After a while the procession slows, then ends.

"It's over," she told the camera with a sigh. "It's over."

More than six years later, the steady hands that created those paintings and photographs are clenched so tightly they're prone to ingrownfingernails and blisters. To prevent injuries, Angela wears braces and has small plush balls forced into her hands to protect them. Answers about what's gone wrong have eluded doctors and specialists, despite a years-long search that's ongoing.

"I don't believe God would have her go through college just to have her sit here like this," said Diane, Angela's mother. "I believe God will cure her. I think that's what we're down to for options."

Diane Sanoski has become an expert on all kinds of unpronounceable medical conditions: Hashimoto's encephalopathy and non-pressure hydrocephalitis. Lyme disease. Batten disease. Parkinson's disease. Angela has none of those, nor any of a long list of others. Her affliction is so mysterious that one doctor told Diane that the ailment crippling her daughter will one day be called "Angela's disease."

Diane has memorized the number for Scarborough neurologist Dr. Edward Drasby. She used to call him when she discovered a new experimental treatment, but it's been months since she last phoned him. Doctors are trained to follow the evidence, and the evidence in Angela's case isn't encouraging.

"She's had biopsies on every part of her body and no one can come up with a diagnosis," said Drasby during a telephone interview. "She had scans of her brain ... at the Mayo Clinic. She had similar brain activity to someone battling Alzheimer's ... a relentlessly progressive neurodegenerative condition that has no name."

Dr. Drasby has sent the scans, along with the results of myriad other tests, to some of the country's best neurologists. So far, everyone has been baffled. Experts at Mass General, said Drasby, reported that Angela has a "glycogen storage disease that had not yet been described in the medical literature."

That's as specific a diagnosis as Angela has received.

"I can't imagine who else there is," said Drasby. "It's very difficult not being able to help someone so young."

Hope is not easily quantifiable in the medical literature. After all the things she's researched and all the tests she's seen done on her youngest daughter, Diane hasn't found any clinical reason to have hope for her daughter, but hope's fierce power endures nonetheless.

"There's no way you can do it on your own strength," Diane said of caring for her daughter. "I have my moments. There are days I can't open my mouth without crying. But I pray upon it. I say, 'God, this is getting too hard. I don't know what else to do, please give me strength.' And a little while later, you start to get stronger."

In another place, at another time, with another group of family and friends, Angela might not have lasted as long as she has.

"It doesn't seem fair," Diane admitted. "I wish it hadn't been her, but I think God knew Angela and her family could get through this."

Almost two years ago, the family was faced with the decision of whether to remove Angela's feeding tube. The medical literature dictates that thischoice be made when a person descends to Angela's condition.

"When it gets to a certain point, the body doesn't eat, it doesn't drink," said Jim. "That's just part of the normal process of dying."

But Angela, the Sanoskis agree, is not in the process of dying. They'll feed her and hold out for whatever new treatments they discover. Jim turns to his paralyzed daughter and brushes back her hair with his hand. If she understands what people are saying, he explains, she must not want to hear about how she might have been starved to death.

"You don't want to hear this stuff hashed out again," he says. "Do you, Ang?"

What might be Fred Greenfield Morse is one of the few people in the world who can say he knows what Angela is going through, although his ailment came about much more violently.

In August of 1993, Fred and two friends piled into his Chevy pickup after a night of drinking. Fred remembers what the clock said when the vehicle hit a tree: 2:16 a.m. The accident happened a month and 27 days after his graduation from Morse High School. One of Fred's friends walked away, another died.

Fred suffered severe head and spinal injuries. For weeks after the accident, he was still and quiet; just like Angela. His beating heart was the only sound his family and friends could take comfort in.

"I had to go a long time without talking," he said, sitting with Angela recently in her room. "Your mind is going 800 miles an hour, but you can't say what's on your mind."

Fred still speaks with a labored slur, and travels Bath in a motorized wheelchair. He was in therapy for more than a decade. He began visiting Angela after his pastor told him about her, despite having to traverse stretches of road where there's no sidewalk for his scooter. Fred remembers that it hurt to have his elbows leaning on hard armrests, so he puts his hand between Angela's bony arms and the plastic armrests of her wheelchair.

"It's aggravating for her," he said. "When you're in this chair, like I was, you have no control over your body. I feel like I'm giving her strength every time I visit."

There was no mystery surrounding Fred's ailment, as there is Angela's.

"Hers came on over time," he said. "Mine came on with a head to the dashboard." He considers himself proof that a trapped mind can escape.

"With my injury, my early progress was subtle and incomprehensible to people," he said. But he remembers hearing what was going on around him and working, bit by bit, to get to a point where he could tell others he was still in there. Somehow. Pool therapy Angela's eyes betray a hint of nervousness as her parents float her rigid body in the Bath Area Family YMCA's pool. The ends of her hair escape into the warm water like golden paint mixing with blue. With her father's hands supporting her, Angela's nervousness is replaced bya hard-earned smile. These gestures, which are so subtle that there is some debate about whether they're gestures at all, nourish the family's hope nonetheless. And lately, they say, there has been new reason for hope.

Jim and Diane move their daughter's legs in a paddling motion, pulling her from one side of the pool to the other. They change positions and hold her upright, helping her feet shuffle sleepily across the pool floor. They shift her onto her stomach and float her across the surface, letting the water massage all sides of her.

"She looks at you like, 'The water's getting a little close to my mouth, don't you think?'" narrates Jim to his wife.

Each time Angela's body is moved to a new position, her eyes flash panic, and then melt into calm.

"We get an awful lot of smiles out of her when she's on her stomach, but mostly I think it's because she's worried we're going to lose hold of her and dunk her," says Diane.

The the trio enjoys about 45 minutes of exercise before Angela is placed on a hydraulic chair that lifts her out of the water, replacing weightlessness with the burden of gravity.

"She seems to be working as hard to relax her muscles as some athletes do to tense theirs," observes Jim, a silver cross necklace dangling over his chest as he climbs out of the pool.

The trips to the pool have tailed off as the winter weather has gotten worse because the family agrees frigid temperatures can't be good for wet hair or wearing a soggy bathing suit. Angela's trips out of the nursing center are now mostly to attend the East Brunswick Baptist Church on Wednesday nights and Sunday mornings. But the expressions detected by Jim and Diane during their swimming trips still break through on her good days at Winship Green.

"She's as alert now as she's been in months," said Diane.

Caring hands

Cassandra Adkins, 25, was a freshman at Wiscasset High School when Angela was a senior. She passed by Angela in the hallways, but never socialized with her, typical of the hierarchical lines in the sand of teenage life. Now Cassandra is one of the nursing assistants at Winship Green assigned to Angela. Most days, nurses, CNAs or family members move her from the bed to the wheelchair and, later, back again. They feed her through a tube and pry her mouth open to brush her teeth. Her body is so rigid that they fear straightening her bent arms might break them.

"It's difficult, knowing how close she is to our age," said CNA Laura Welch, 24. "I'm getting married in August, like she did with Neal a few years ago. It makes you think about what her dreams were that aren't coming true."

As peers, Angela's CNA team has wiped out any social lines that may have existed in high school, leaving them to guess what she would want. They dressed her up on her most recent wedding anniversary and do her makeup and hair for photographs.

"We include her in our conversations and we talk to her like we're going to get a response back," said nurse's assistant Angel Temple.

And so was the case recently as Adkins and another assistant were preparing Angela for the day. The pair buzzed around the room getting everything in place, chatting with Angela as always.

"Do you want to take a shower, Angie?" asks Cassandra. "Do you want to take a shower?"

It was a question Cassandra, like her co-workers, has asked numerous times.

A question that over and over again has drifted into the morning air and disappeared.

"Do you want to take a shower now?" she asked again. "Do you want to take a shower, Angie?"

While a conversational question like that usually evaporates without a response, unspoken questions constantly hang in the room. Has Angela struggled long enough? Is it time to give up?

"No," said Angela.