Traverse City Record-Eagle

February 1, 2013

Virginia woman pieces together 17 years lost to amnesia

By Craig Juer
Special To The Washington Post

— When Shawnda Rush woke up in her one-story house overlooking the fields and woods of Virginia's Shenandoah Valley, she could see a cane leaning against the bedside table and the sunshine through the sheer white curtains. But the world that lay outside the room was a mystery to her.

She heard footsteps outside the doorway and tensed when around the corner and up to the edge of the bed crept a sandy-haired toddler, who appeared no older than 1 or 2.

"Mommy?" the child cooed.

Shawnda panicked. She didn't recognize the girl but played it cool and greeted her.

Where am I? Shawnda thought. Why can't I remember her?

She felt weak, and grabbed the cane and limped into the living room. Everything was quiet except the murmur of a television. A chair sat by the front door. She noted the two sofas and how they were positioned. In the kitchen, she saw a man. His back was toward her.

"Then I realized he must be my husband," she recalled.

Shawnda knew who she was, and she could recognize her mother upon waking that morning in April 2005, but her husband and her daughter were lost to a large, dark gap in her mind.

Shawnda at first kept her confusion to herself. Over the ensuing weeks, though, she revealed to her mom, Marsha Rush, the breach in her memory. Marsha started sharing the details of Shawnda's life with her: that she was 30, that she had been married for about three years and that she had a 19-month-old daughter, Shaylin. And that a doctor had diagnosed Shawnda's multiple sclerosis almost a year before. For several months, she had been having cognitive problems: forgetfulness, confusion, feelings of helplessness, loss of vocabulary. Apparently, that had become amnesia.

While her vision, which over the past year had deteriorated greatly, was suddenly clear, Shawnda eventually realized that a 17-year chunk of her memory was gone. The only comfort to her was that Shaylin was unaware that her mother had forgotten her.

Migraines, or normal headaches, tingling, numbness, needle feeling in feet, forgetting certain things. April and May was same as above in March, but my left eye was starting to get worse.

Mid June at work, both arms go numb. Thought I was having a heart attack or stroke — ate candy bar and drank Hi-C because thought it was sugar. Left/Right went numb while driving — my rear and legs would get numb often.

June 26 — Forgot people's names at a wedding.

— Pain Journal, 2004

Strasburg, Va., a small town among rolling, green foothills, is a frequent stop for truckers headed down Interstate 81 toward Roanoke or north toward Pennsylvania. Shawnda was born and raised in the surrounding county, and it was I-81 that she took in 2004 to go to work at Alexander Properties, in nearby Basye, Va., where she and Cindy Davekos-Wilson sold timeshares at the Bryce ski resort. Shawnda, a tall, blond 29-year-old and new mother, had taken the job to make more money than she made as a paralegal. She and Cindy became fast friends.

That spring Shawnda started noticing symptoms. The vision in her left eye would fade. Numbness afflicted her extremities.

One day, "she called me up borderline-hysterical," Cindy said. "She went to hit the brake in her truck, and she couldn't get her foot to move. . . . I'm on the phone crying, but I'm not letting her know. This is my friend, and I'm trying to keep her strong, but I'm like, 'Something's really bad here.' "

Shawnda hadn't divulged the symptoms to many people, or even to her husband, but Cindy insisted that Shawnda get help to prevent losing control of a car with Shaylin in it.

Shawnda went to optometrist David Tufts, who diagnosed retrobulbar optic neuritis and referred her to Winchester Neurological Consultants to be evaluated for multiple sclerosis. The next day, Scott Shulman informed her she probably did have MS, and had her admitted to the hospital for an MRI and to begin steroids. She went to Winchester Medical Center over Fourth of July weekend, still not grasping the diagnosis.

"She was even more upset, at times, because she was missing her favorite holiday," Cindy said. "So I planned a party at her house because of her condition, and I got everybody at work together, and they ended up getting her family together."

Shawnda steadily deteriorated. She was prescribed more than 10 medications, but her symptoms grew and became more varied. Once lean and athletic, she was gaining weight and losing mobility, all the while stricken with bouts of pain and numbness. Her vision got so poor that, at times, she could see objects only directly in front of her face and, often, nothing at all with her left eye.

"It was really hard on Shaylin, 'cause she'd go to her mom, pull herself up on the couch, and she wanted Mom to pick her up," Marsha said. "She would start crying, and Shawnda would do all she could just to pick her up, and then she would start crying because she couldn't."

Shawnda endured hallucinations and nightmares, and made nonsensical exclamations. Her mother, who came by the house every weekday to care for Shawnda and the baby, once noticed Shawnda sniffing the curtains intently. Shawnda told her she'd dreamed the curtains were on fire and could now smell smoke. Another time, Marsha followed Shawnda onto the roof in search of another phantom fire.

There were laborious trips to neurologists, optometrists and physical therapists all over the mid-Atlantic. Shawnda went on permanent disability, and survival became her full-time job.

As Shawnda worsened, her husband withdrew, according to Shawnda and Marsha. He declined to be interviewed for this story. The community rallied to help the family pay medical bills: a benefit poker run and barbecue, then a golf tournament that raised tens of thousands of dollars. Shawnda's husband jumped between work and unemployment.

"I took care of her and the baby," Marsha said. "I actually took care of him, too, 'cause I did the laundry; I did everything."

Cindy Davekos-Wilson came to the house once to wait for Shawnda and Marsha to return from a doctor's appointment. As she was sitting outside, Shawnda's husband arrived. He told her to leave the family alone, Cindy said, that there were too many people coming by. He told her that it was too hard for Shawnda to see Cindy in a good place, living her carefree life. Cindy was baffled.

"I hadn't known him for a long time, and I said, 'It's not my place to be somewhere I'm not wanted,' " she said.

Cindy excused herself from Shawnda's life immediately.

I find my old journals. I thought my marriage has gone wrong these past 4-5 months, but this one was written in Sept of 04 when I was sick . . . . What the hell happened! Where was he? Why didn't he stand up for me? Why didn't he take care of me?

I feel like reality has hit me and I'm in a bottom of a pit. Everything has collapsed. . . .

— May 30, 2005

As she struggled to reclaim her memory, Shawnda discovered she had been a life-long keeper of journals. She found them stashed in a box in the spare bedroom: Some were in bound, floral-patterned books, some folded together on sheets of notebook paper, and others in a paper-clipped stack of stationery. Usually she wrote in the first 10 to 20 pages of a journal before putting it aside and starting a new one, always writing in breathless, unrelenting chunks of thought. She had taken meticulous notes on her entire life.

She had relationship journals, pain journals, drug journals, everyday life journals. Some entries were mundane, but others were revealing, such as this one from the year before she and her husband were married:

I'm "in love" again but this love is like the feeling I didn't think I could possibly ever have again. But . . . I don't think he's in "love" with me. Why do I fall for men that don't love me or don't want anything that I want? The 2 things I think about each day is how do I back out of this — I don't want to but I ask myself why be with someone who doesn't care. [He] knows how I feel but I never get a response.

— May 22, 2001

Shawnda learned of her troubles with her husband and read in detail about all the pain and depression she had lived through the past several months, and then forgotten. She read of people in her life who were now like characters in a novel she was starting from the middle.

Multiple sclerosis causes a person's immune system to attack and damage her own brain and spinal cord. The damage to her nerves' protective covering can alter how her brain normally detects pain. Numbness, poor motor skills and deteriorating vision are all common, and can come and go unpredictably. But doctors consider amnesia such as Shawnda's rare.

Neurologist Avindra Nath, now at the National Institutes of Health, treated Shawnda at Johns Hopkins Hospital in Baltimore.

"The hippocampus is a very important part of the brain for memory," he said. "So you can imagine that if she has destruction of cells within the hippocampus from the inflammation associated with multiple sclerosis, then that can possibly lead to the loss of memory."

Some physicians have suggested to Shawnda that the cocktail of steroids and other drugs she was prescribed might have caused the memory loss, but Nath said that was unlikely. Still, he said that it's puzzling that she lost so much, so abruptly.

From 2005 on, Shawnda began counting her birthdays at zero, signifying that while her body is 38, she has only eight years and counting of life experience. She refers to herself pre-amnesia as "she" and "her," rather than "I" and "me."

She had to relearn virtually everything since adolescence. As her symptoms regularly confined her to the house and to bed, she watched TV for cues on the rhythms and tools of human interaction. The characters in daytime soap operas and syndicated sitcoms at night, especially "George Lopez," served as her examples of how to talk and act.

"I know that life is not a sitcom," she said in an interview in 2012. "But I also want people to understand that's how I've had to learn. I don't know any life any other way, because I lost my memory. People had the opportunity to come out of the womb and go through school and learn friendships and stuff. I lost all that."

She watched the same shows every day, latching onto anything that could become familiar in a hurry. She used her daughter's math homework to relearn multiplication tables. Even when Shawnda learned how to operate a cellphone again, she didn't know any of the names in it. Marsha told her what she could about the names she knew.

When Shawnda did try to reconnect with the people in the contacts list, their meetings were often awkward and pointless. Old friends would sometimes be frustrated that anything they brought up from the past was lost on her. For Shawnda, trying to explain what was wrong with her mind to someone she couldn't remember was exasperating. "I'd just sit in tears the whole time," she said.

When she found herself in a group, she often kept quiet and hoped she would go unnoticed. But often her confusion became obvious, which prompted her to withdraw.

Marsha identified one woman in Shawnda's phone as a longtime friend, so Shawnda asked her to lunch. The other woman turned out to be harboring a grudge about the cost of a bridesmaid gown for a wedding Shawnda had called off in her 20s. "I didn't even know I was engaged!" Shawnda said.

Her previous engagement was only one of many surprises from Shawnda's past. In addition to selling timeshares and working as a legal secretary, Shawnda's longest, most accomplished career was as a sheriff's deputy and a correctional officer, jobs she had held for nearly 10 years. She was astonished to find in one of her boxes a stack of paper targets, riddled with bullet holes — a souvenir from her past life.

"I remember sometimes, she would tell [unruly inmates], "No, uh-uh, we're not going to have that kind of mess. It's not going to be that kind of day," said Les Tinsley, her commanding officer when Shawnda worked at Prince William- Manassas Regional Adult Detention Center. "And she would put an end to it."

The woman who could disassemble, clean and put back together a semiautomatic sidearm had to learn from her mother how to use far more ubiquitous tools: a stove, a phone, a can opener.

Shawnda had to put together a new persona, based on what she could learn of her previous self and how she felt about her new identity. In the past she'd been a party girl who could talk like a sailor; now she was a devoted mother and more ardent Christian.

"She was pretty headstrong; she wasn't going to let anybody run over her," said Marsha, who tells a story of the old Shawnda going to a Halloween party in a pig costume. The host was having trouble with a drunk, belligerent girl who wouldn't leave. Guests asked Shawnda, the deputy, to take care of her.

"She put the girl down to the ground in a chokehold and told her not to come back in," she said. "When Shawnda came back in the pig costume, it looked like she had wallowed in the dirt."

The new Shawnda went to physical therapy and gradually was able to exercise again. Arduous daily sessions restored muscles that had atrophied, eventually allowing her to walk without a cane, and to carry her daughter and the groceries.

Shawnda went to therapy to learn how to speak like a woman her age, rather than with the teenage vocabulary she'd been left with. "She was very intelligent when she was young," Marsha said. "She knew computer technology; she had her schooling. Her vocabulary was a whole lot better. Today it's still not as great — some words she still has to look up. Simple words."

In speech therapy, Shawnda relearned basic arithmetic, performed flashcard exercises to enhance her vocabulary, and learned how to use a checkbook. Outside of therapy, she bought a pocket dictionary and would question Shaylin about the words she learned from the TV show "Dora the Explorer." Finding out that she had known Spanish in her past life was a bittersweet revelation.

"Just like I didn't know how to pump gas, I didn't know how to use a debit card, I couldn't do any of that stuff. So I had to learn."

Marsha taught her how to drive her Chevy Tahoe in the cul-de-sac in front of her house. That allowed her to take trips to the local Food Lion and back, but no further. On one such trip, she was pushing her cart through the aisle when a woman approached her.

"Shawnda?"

This was, as far as she knew, a stranger. Shawnda stammered her way through a conversation for a few minutes, gleaning that the woman's name was Kim. Before Shawnda could explain her memory loss, she had an anxiety attack.

"I took off running," she recalled. "I remember running through the bread [aisle], going out the door, getting in my Tahoe and just sitting there, holding onto my steering wheel. . . I didn't know what to do. I was panicking."

Every trip outside the house allowed for the possibility Shawnda could find herself in the company of someone who knew her well but seemed a stranger. The thought terrified her.

One day, Cindy Davekos-Wilson bumped into Shawnda and her mother at the courthouse. Marsha greeted her, but Shawnda showed no recognition.

"I couldn't believe it," Cindy said. "She just looked right through me."

Shaylin didn't pick up on her mother's memory loss until she was between 3 and 4 years old. She'd hear Shawnda saying "I don't remember" time and time again, and began mimicking it. Asked if she washed her hands or picked up her toys, Shaylin would reply, "I don't remember."

After Shaylin turned 4, Shawnda sat down with her to watch a home movie from Shaylin's infancy. Shaylin hadn't seen it, and Shawnda had no recollection of it — or what Shaylin was like as a baby. After 15 minutes, Shawnda was in tears.

"Shaylin held me as if I was the child," Shawnda said. "She knew I didn't remember the birth of her, nor remember those videos of her being so young."

When Shaylin was in the second grade, she wrote in class that when she grew up, she wanted to find a cure for multiple sclerosis.

Helping Shawnda was a mother's impulse, Marsha said, but part of that was born of a burning need for Marsha to redeem herself to her daughter.

When Shawnda was 8, years after her biological father had disappeared, Marsha was in an abusive relationship. Her mother, Shawnda's grandmother, decided to take Shawnda, and Marsha relented. But Shawnda's troubles didn't end there.

"She would beat her," Marsha said. "Mom was cleaning the commode one time and made her eat a rag she had cleaned the commode with. My mom was really an abusive person. I mean, she did it to me."

Shawnda, though, doesn't blame her mother and says she forgave her grandmother long before her death in 2009. Shawnda gave the eulogy at her grandmother's funeral.

"I think we're still very close, and I know that she'll help me in anything," Shawnda said of her mother. "And I'd do the same for her."

I told him I would like to stay b/c of Shaylin, her room, toys, etc., and maybe he could just find a place to stay for a while.

He didn't say anything.

— June 5, 2005

Shawnda was improving, but her marriage continued to struggle. Shawnda says her husband sometimes admitted that he had never loved her. In June 2005, Shawnda told him she wanted a separation. The following February, their divorce became final, and the house was sold.

Shawnda and Shaylin now live with Marsha in a house in the woods on the outskirts of Frederick County, in Virginia, decorated front to back with Wild West-themed artwork and antiques.

Shawnda Rush doesn't leave the house without her precisely done makeup and array of jangly bracelets. These days, she's less into miniskirts and heels than she was as a younger woman, and is now more comfortable in jeans and a sweater. She talks with a mild country twang, and her demeanor sways quickly and easily between that of a giddy pre-teen and of a 38-year-old woman weathered by multiple sclerosis.

A normal day includes fatigue, numbness, muscle spasms and temperature sensitivity. A bad day includes migraines, vision problems, extreme fatigue and emotional lows. She undergoes difficult, monthly infusions of the drug Tysabri.

"The infusion takes a little over an hour, and then after that they take the IV out, and they have to monitor you to find out if you're going to die," she said, laughing.

But Shawnda is at least lucky that her massive memory loss coincided with the advent of a tool for rekindling relationships: Facebook.

"You've got to love it," Cindy Davekos-Wilson said. "I got curious if she was on there. She has never not been in my mind."

Cindy couldn't find Shawnda under her married name and had never known her maiden name. In August 2010, however, she woke up to a realization: Shawnda's mother's name was Marsha Rush. She sat down at the computer and typed in "Shawnda Rush." Bingo.

Shawnda accepted her friend request, and the pair reconnected over lunch last March. Cindy told Shawnda stories about her former life, and Shawnda told her that neither Shawnda nor her mother had anything to do with her husband banning Cindy from the house. They both cried at the sandwich shop that day. After being strangers for the better part of a decade, the two were friends again.

"It was very touching," Shawnda said. "There were just so many different things that she shared with me. I mean, I guess it was six or seven hours that we sat there and talked. I truly, truly just so much enjoyed her telling me everything, and even sharing pictures, and then telling me about other co-workers that were involved in my life. . . . I didn't know that she had known so much."

Their friendship has allowed Shawnda to reclaim a small, but significant, part of what she lost when her illness struck.

I'm not scared to meet people from my past anymore. I want to know, now, and wanting to know more. I now enjoy hearing people tell me stories of the life I did not know — their funny, intriguing, oh-my-gosh moments. There still can be sad moments. I'm finding there were many people in "her" life that loved her and still love me :)

— June 6, 2012

These days, Shaylin proudly tells strangers that she's 9 years old and her mom is only 8.

"She does worry a lot when I get sick. She knows a lot — more than most children," Shawnda said. "These strengths that she has so much at an early age, I know they'll make her flourish as a young adult."

When Shaylin learned to write, she would also scribble her thoughts and feelings down in notebooks and diaries. Like her mother, Shaylin always goes just a few pages into her journal, then finds a new one and starts over on a blank white page.