Brain in a Vat

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What's wrong with Candace? Mystery illness drains honor student of senses

July 7, 2002 PUBLICATION: Atlanta Journal-Constitution

Candace Anderson lies in a hospital bed as her mother, Sarah, draws letters with her index finger on her daughter's forehead. M - O - M. Candace leans her cheek into her mother's palm. She understands. At 19, Candace Anderson is a medical mystery. Doctors have no idea why the Mercer University student's hearing abandoned her four years ago, why she developed a condition called sensory neuropathy that made it painful to walk, write and button a blouse or why she woke up blind last December. In May, she lost feeling in her legs, then her arms. Within days, she could no longer move her body. Panicked, she told her mother the numbness was spreading upward. "I can't feel my tongue. . . . Help me find my mouth." Her speech became slurred, and by the next day she couldn't talk at all.
Adding to the mystery and doubling the tragedy, her sister Sophia, 18, has lost her hearing, and her sight is faltering. Candace's medical care seems at a dead end. She and her mother have occupied the small private room at Emory University Hospital for two months. Doctors don't know how to treat an illness they can't even name. Yet Candace is still here. Her body is of no use to her, but her mind is working. Tests show normal brain activity. Candace rolls her head side to side to express frustration. When her 7-year-old niece, Kalauna, strokes her hand and begs her to come home and play, the corners of Candace's mouth turn up just enough to call it a smile." You can see the fight in her," her mother said. "Her senses are gone, but the mind is fighting to bring it all back. She wants to come back."

Trying to keep it secret
Candace was an honor student at DeKalb County's Chapel Hill Middle School when she suddenly could not make out what her teachers were saying. She could still hear noise, but she couldn't understand the words.
Candace -- independent and intent on becoming a doctor -- didn't want anybody to know. But by her junior year at Columbia High School, she couldn't hear at all and couldn't mask the pain in her feet that made it hard to walk.
Sister Sophia, 14 months younger than Candace, also was losing her hearing.
Their frantic mother searched for answers while the girls struggled to keep up in school.
Sarah Anderson wondered whether environmental problems in their neighborhood were to blame, but doctors noted that her two older daughters were healthy. Doctor after doctor examined the girls, but no one knew what was wrong.
By graduation in spring 2001, Candace needed a wheelchair, but she refused to use it to accept her diploma. With Sophia on one arm and boyfriend Japheth Hutchinson on the other, Candace walked across the stage.
She moved into a dorm at Mercer in the fall, wore a shimmery white gown to the Snow Ball dance and studied so hard her adviser wondered when she took time to eat.
"Candace was relentless," said adviser Michelle Currie. "Her professors were really crazy about her as far as her tenacity and her focus."
Candace was looking forward to rushing Delta Sigma Theta sorority in the spring, but she had a new health problem. She could barely see.

Seeing the sights
Still in her fall semester, she had to drop all but two classes. Her mother typed her literature assignments, such as Toni Morrison's "The Bluest Eye," and enlarged the print on the computer so Candace could read it. For Christmas, Candace and Japheth, a Columbia High senior, took a Greyhound bus to New York. Candace didn't want to fly. She wanted to savor what she could see out the bus window. In New York, a young cousin started writing with her index finger on Candace's forehead as a game. Candace, who could still speak, told Japheth she could understand. They spent the 21-hour bus ride home working out codes, one tap on the forehead for "yes" and two taps for "no."
Within days after returning home, Candace was blind. Still, she wanted to return to Mercer. When her mother convinced her that wasn't possible, she dived into a plan to start a home-based business selling her own line of lavender-scented lotions. But the girl, who as a child asked Santa for an overhead projector instead of dolls, longed for school. She begged her mother to find a correspondence course. A friend from the DeKalb school district found a college in Mississippi willing to send Candace some course work.
But she only got sicker. Sophia visited her sister in the hospital after her senior prom. Candace wanted to know all about how her mother dyed her white gown peach for Sophia, and Sophia wrote the details on her forehead. Candace eyed May 27, Sophia's graduation, as her deadline to get out of the hospital, but by then she was unable to move. Sophia, who'll study special education at State University of West Georgia this fall, still writes on Candace's forehead. "It hurts for me to see her so broke down," she said.
She downplays her own health problems and the fear that she will follow Candace's path. Her symptoms are progressing more slowly."I'm OK," she said.

Doctors at impasse
Dr. Jonathan Glass, an Emory University neurosurgeon, has followed Candace and Sophia for over a year and believes the sisters have a rare genetic disorder. He has conferred with other experts and brought in other doctors to examine Candace, but there are no answers.
"I've never seen anything like it," Glass said. "She has some kind of nerve degenerative disorder affecting all her sensory systems, but we can't put a name on it."
Without a diagnosis, there can be no prognosis. Glass is not optimistic, but he is running more tests.
A more immediate problem is figuring out how to care for Candace when her Medicaid insurance plan stops paying and insists she be released from the hospital.
Her mother wants to take Candace home and care for her with help from state-paid nurses.
But the state will provide only four hours of nursing care a day, temporarily, until Anderson learns to care for her daughter by herself. Because Candace is on a breathing tube and her condition is fragile, Anderson thinks she needs 10 or 12 hours of nursing care a day to monitor Candace's vital signs while Anderson sleeps and does chores around the house. Medicaid is pressuring Anderson to put her daughter in a nursing home, but so far none will take Candace. Public policy generally favors home care over nursing homes, especially for the young. There is a program to help families with children younger than 18. A separate state program provides for disabled adults who want to live independently. But that program is for adults 21 and older and has a two-year waiting list.
At 19, Candace is stuck in the middle, ineligible for either. And without a diagnosis, there is no foundation or association to turn to for help. Inside Candace's tiny hospital room, friends come and go, often writing messages in a scrapbook her family is compiling for her. "See you in medical school," wrote one of the hospital techs who helps care for her. Like Candace, he plans to become a doctor. Japheth, who graduated from Columbia High and plans to enroll in DeKalb Tech, places Candace's arm on his shoulder and rests his head on her shoulder. He whispers in her ear, kisses her cheek and strokes her ear, where he thinks she still has feeling. He reminds her of their dates to Red Lobster and the fun they had goofing off at the grocery store. "I can't wait until she opens her eyes and sees me and I see her," he said. "We'll go out that same night."

Mother always there
Sarah Anderson is amazed at Japheth's loyalty to the girl who caught his eye in first grade, when Candace wore glasses and an Alvin and the Chipmunks jeans jacket.
"There are husbands who would not have stuck by their wives through all this," Anderson said. Candace's father, Charles, a home builder, visits often, as does Charlie, Candace's older sister. Anderson, who quit her receptionist job to care for Candace, never leaves.
At night, she sleeps in a turquoise chair facing Candace, close enough to reach out and grab her hand. She wants to be sure she wakes up if her daughter needs her.
"It's like a newborn baby," she said. "I've become a new mother again, but in a totally different way."