CHARLOTTE, N.C. — Gary Marshall found his daughter lying in bed, squeezing her temples and screaming. Her cheeks were red from fever, her eyes red from crying.
She complained of a pounding headache, and was disoriented. She didn’t know where she was. She didn’t understand why there was a tree — their Christmas tree — in the living room. On the way to the emergency room, she didn’t recognize any landmarks.
Gary didn’t realize it then, but Bethany didn’t recognize him either. She had no idea he was her father. She didn’t even know what a father is, or why she was supposed to love him.
A virus had invaded her brain and stolen her memories. On that December morning 10 years ago, Bethany Marshall started life over at 17.
Bethany’s parents have wonderful memories of her first 17 years: Bethany at Disney World. Sweet big sister to Caleb and Jessica. Drum major in the high school marching band. Pianist. First baseman on the softball team. Soprano in the church choir. Miss North Iredell High.
Bethany remembers none of that. Her first memory begins the day she woke up feeling sick and confused, Dec. 11, 2000. She remembers looking at the Christian rock posters on the walls of the bedroom and the piles of clothes on the floor. She didn’t know who all the stuff belonged to.
She remembers screaming in pain.
Then a man walked in.
Something about the stranger reassured her. She felt she could trust him. She let him pick out clothes for her to wear and let him drive her to the hospital. It was her room, she would learn. Her clothes. Her father. She would have to figure out exactly what a father was, but that would come later.
First, she had to figure out who she was.
Trillions of memories
Memories make us who we are.
Precisely how we store trillions of bits of information — more than any computer can store — remains one of the mysteries of the mind. Scientists are equally baffled by how we lose that information.
They do know this: New memories are encoded in the brain’s hippocampus. They suspect memories go from there to the frontal lobes for long-term storage. Amnesia results when the frontal lobes are damaged, sometimes by a blow or sudden jarring or, in Bethany’s case, by a viral infection.
The same virus that caused cold sores on her lips migrated to her brain, resulting in a rare and often fatal condition known as herpes encephalitis. The virus attached itself to neurons in her brain and either wiped out her memories or wiped away her ability to retrieve them. Scientists aren’t exactly sure what happens.
As she waited in the emergency room that first day, a strange woman rushed up and covered Bethany’s bare feet with a blanket.
Baby, are you OK?
Somebody is squeezing my head in two, Bethany told her politely.
Bethany looked over to the man who had driven her there, the man she would eventually come to know again as her father. She needed his help. She wanted the woman to leave her alone.
Patricia Marshall could tell Bethany didn’t want her hovering. She blamed Bethany’s odd behavior on the pain. Patricia was her mother, after all. They had always been close.
But as the hours in the hospital passed, then days, Patricia realized that the Bethany she once knew no longer existed.
Word spread through Olin, N.C., their rural community of 1,500 people north of Statesville, and family and friends rushed to the hospital.
Her dad explained to Bethany who each visitor was:
This is your brother, Caleb.
Your sister, Jessica.
Your teacher. Our neighbor. One of your friends. A member of our church.
Bethany stared as if she was seeing each person for the first time. They meant nothing to her.
She could tell that her lack of recognition dismayed them. To be the one forgotten seemed as painful as being the one who forgot.
A piano revelation
Bethany was like a child. She didn’t know what a microwave oven was, or how to work it. She didn’t realize TV cartoons are not real. She didn’t understand how leaves changed color, or how a new year follows the old.
She remembered how to tie her shoes and how to walk and talk. Those unconscious muscle memories are stored in the basal ganglia and cerebellum, parts of the brain largely unaffected by amnesia. She could instinctively do a lot, but didn’t remember learning how.
The first time she heard her sister play the piano, she was mesmerized. It sounded beautiful! Her parents told Bethany she knew how to play, too, that she performed in church and accompanied a high school choir. Bethany didn’t believe them, refused to even try.
Then one day, while talking with her mother, she sat down at the piano and rested her hands on the keyboard. Without intending to, she began playing chords, and Beethoven’s “Fur Elise” emerged from her fingertips.
That moment was a turning point. Bethany understood for the first time that she really did have a life before.
Tolerating the pain
Her memories never came back and the headaches never went away. They were her biggest hurdle to recovery.
She felt locked in a world of chronic pain and frustration, sometimes anger and depression. The pain was so severe some nights, she raged like a mad woman. Her father rushed her several times to the emergency room.
After three years, multiple doctors, dozens of drugs, but little improvement, they sought out Dr. Alan Finkel in Chapel Hill. He weaned Bethany from all the medicines, a horrible experience in itself.
Then he prescribed topiramate, an anticonvulsant often used for migraines. It reduced the frequency of her headaches, though she still endures daily headaches that might send another person to bed.
Learning to tolerate the pain and understanding the importance of coping with chronic illness allowed her to think about moving on with her life.
A reality TV show, of all things, helped her do it.
She was watching “Starting Over” on NBC in 2004. Six women were living together on the show and working on problems in their lives with help from a psychologist and two life coaches.
Bethany sent in a video of herself.
“People were telling me what’s right. I had to figure out what’s right for myself,” she said. “I wondered what values were mine, and which were theirs.”
A few months later, the same Bethany who once was content to live in Olin for the rest of her life was living in Los Angeles with five women and starring in a TV show.
She assumed her problem was her lack of memory. She felt sorry for herself, wondering why it had to happen to her. On the TV show, she said she discovered that self-esteem — not amnesia — was her real problem. She was scared to try anything, scared to live.
She remembers saying she couldn’t go to college because she didn’t know anything. That’s why you go to college, her life coach said: to learn.
If she had no past, Bethany wondered, could she have a future?
Discovering who she is
She enrolled at UNC Greensboro in 2005 with her brother, Caleb. She was 22, older than most freshmen, but younger in many ways.
They lived off campus, and Caleb helped her with homework, answered her endless questions, looked out for her.
She carried a dictionary wherever she went. She didn’t remember a lot of words. Or maybe she never knew them.
She enrolled as a music major because people told her she loved to perform. But that was the old Bethany. The new Bethany had no desire to sing or play piano in public. She switched her major to communications studies. She wanted to understand herself and others.
She was like a sponge, soaking up all kinds of knowledge and experiences. She not only had to relearn her history, she had to relearn the history of the world.
She watched how her classmates interacted, and began to understand the nature of relationships and the importance of family and friends. She finally realized why her amnesia upset her mother so.
“I feel,” Bethany said, “I need to double-love her now.”
Bethany graduated in May 2009 and works as a receptionist for Piedmont HealthCare Family Medicine in Statesville, N.C. She interviewed last week at UNC Greensboro, where she hopes to return in the fall to get a master’s degree in communication. She wants to teach. She appreciates the irony that someone who knew almost nothing may one day teach.
She is still surprised nine years later to occasionally discover little things about herself. “I feel like my family has this secret I don’t know.”
And what if suddenly she did know everything? What if all her memories flood back tomorrow?
Bethany is 26, and she’s not sure she wants those memories back. She is a different person now, formed from nine years of new experiences, and she’s happy being that person. It’s all she remembers.