By DeNeen L. Brown
Washington Post Staff Writer
Sunday, July 24, 2005
Up Highway 96, sometimes called the State Fair Freeway, past the cliche of wheat fields, the thicket of signs proclaiming a right to life, take a left on 23rd Avenue and you will find a very plain nursing home, where something happened that wasn't supposed to happen.
Defied man-made logic.
Resisted complicated scientific analysis.
Couldn't be explained by some of the smartest brains in the world.
Sarah, lying in this bed nearly 20 years, brain-damaged, blank, speechless, immobile, staring out the same window. Couldn't talk to the people who came to talk to her. Couldn't say change the channel. Couldn't say shut up. Couldn't say scratch that itch . . .
Sarah, who 20 years ago was run down by a drunk driver, the impact throwing her into the path of a second car that slammed her forehead and left her so damaged nobody understood how her body survived, let alone her mind.
Sarah. They didn't know that as she lay in that bed, with her mouth gaping, face wretched in a silent agony, body atrophying, feet gnarling, fists clenched across her chest, tight, as if she were afraid, big, blue eyes staring out like she was trapped . . . They didn't know that as she lay there, something in her brain was mending.
People came and people went. Some grew up and some grew old. Some gave up and went away, guiltily diving into their own lives as Sarah Scantlin lay in that bed. Never believing she would do anything more than lie there and stare into oblivion, or wherever it is that brain-damaged people go, hovering between now and then, nowhere and somewhere, just out of reach.
Then six months ago, Sarah came back.
What is it like to spend nearly 20 years in a nursing home, silent for 17 years, screaming, loud, disturbing screams for three?
Sarah, where were you? What were you thinking all those years? Were you afraid?
Sarah, how did you come back? Who crossed over into wherever you were and pulled you back to this side?
Do you have the words to tell us?
"Sarah," Dad says, "you have to set some goals for your therapy. What do you want all this to lead to? Would you like to go to the mall and shop? Would you like to go see Brother?"
Sarah looks up.
Eyes wide. Face wretched.
"Run AaaaWaaaa . . ." she says.
"I don't blame you," her father says wistfully. "Work, real hard, Sarah. So you can run away."
There was another Sarah before this Sarah. A long time ago, there was a happy girl who lived with her mother and father and brother in a little town in Kansas. This Sarah loved to talk, just like her father, a traveling salesman who made a pretty good living selling mobile homes. In high school, she was a "blast," captain of the Pantherette Drill Team.
She was in the royalty court at homecoming. She saved fortune cookie messages: "Someone who deserves special attention awaits your magic voice." She wrote captions in her photo album: Sarah and Stacie. Sarah and Lori. Sarah and John at the prom. Sarah is wearing a pink dress with bow. There's Sarah walking across the stage. Confetti in the air.
After Sarah graduated, she enrolled in Hutchinson Junior College and got a job at Ken's Pizza.
One happy night -- Sept. 21, 1984 -- Sarah, 18, went to Tapper's bar to celebrate making the school's Dragon Dolls drill team. When the bar closed, Sarah and friends started walking down the road.
And there came Doug Doman, 21.
Two years earlier, according to records, Doug had fallen through a roof while working on a summer job. He dropped three stories, landing on his head. He spent weeks in a coma and two years in rehab. Doctors told his parents they should let him go on with his life as normal. But his friends, or the people he thought were his friends when he was a popular athlete, called him "retarded," and he felt lonely. On this night, he had asked his parents for permission to go to the pool hall, where he tried to befriend people by buying them drinks.
Doug drank too much, they say.
And he was still blind in one eye.
And got behind the wheel.
His car swerved toward Sarah's crowd.
Her friends ran.
Sarah did not run.
"The car hit her," says her dad, James Scantlin. "Slung her high, like a slingshot, over the car into another car that hit her head head-on. The second car, the impact of that second car, it is what did the damage. It killed her. She stopped breathing."
Doug drove away, drove home and passed out.
Sarah was flown to Wesley Medical Center in Wichita, an hour south of Hutchinson. She was diagnosed with traumatic brain injury, trauma to her chest and an amputated finger. She had to have a lobotomy on the part of the brain that governs speech, her mother said.
She lay in a coma for six weeks, stitches mounting her shaved head like stitches on a softball. Her eyes were bruised, tubes were in her nose and blood was on her pillow. You wouldn't recognize the girl with the Farrah Fawcett haircut.
Her mother, Betsy, moved into an apartment to be close to her. She spent days sitting with Sarah, holding up Sarah's head. "Before she opened her eyes, she didn't move a muscle, except to yawn," says Betsy. "When she opened her eyes, there was a blank stare for three months."
By the time Sarah was moved to a nursing home, on April 11, 1985, a physical therapist wrote in her discharge summary: "Patient is awake and alert. She reacts to painful stimuli. No consistent communication has been established, although we have worked on an eye-blink system: one blink-yes, two blinks-no."
Doug, during his six months in jail, wrote, in big loopy cursive: "Mr& Mrs Scantlin, How is Sara, I live everyday with her continuously in my thoughts and prayers. I'm in Jail it is bad. . . . It is going to take time, but I would like to help Sara make her come-back, she will and if you will let me, please. I love you both Doug."
Sarah's eyes dart to her dad's. She tries to raise her head, which seems almost fused to her right shoulder after so many years of clinging.
"Sarah wants to run away," Dad says.
"Good for you, Sarah. Leave us a note. Send us a postcard."
When Sarah arrived at Golden Plains HealthCare Center in Hutchinson, she was on a feeding tube. Therapists began working to teach her to swallow. They taught her how to use her eyes to talk. Sometimes she could blink yes or no or indicate responses by looking at cards: "Is your name Sarah or Bob?" "Is your mother's name Betsy or Sally?" Sometimes there was nothing.
As Sarah worked, her parents had to pick up pieces of their lives.
The grief was exhausting. "It was kind of like going into a room where there are no windows. It is dark. There is no clock. No lights," Betsy says. "Then all of a sudden you say, 'I can't stay here the rest of my life. I have to come out of there.' And you go back outside and there is light and people and their life has gone on and yours has stood still."
In 1986, James and Betsy sold all their worldly possessions, bought an RV trailer and moved to Albuquerque, where James worked as a substitute teacher and Betsy "did nothing, just lollygagging around." The next year, Betsy had a dream about Sarah.
"She was walking toward me and she said, 'Hi, Mom!' That was about the same time I said, 'I have to go back to Kansas.' . . . I brought her into this world and I'm going to see her out."
They moved back. Her father went to work on a master's in behavioral disorders at Wichita State. He wanted to understand what had happened inside his daughter's head. He found that if the brain gets jarred, blood clots, its ventricles get blocked and contusions may form. Small blood vessels sometimes break and the tissue surrounding them is deprived of blood, causing death or irreversible damage.
"Head injury changes the individual and their family forever," James wrote in a term paper. "Experiencing a potentially life-threatening situation, followed by intensive medical care, long-term rehabilitation, the loneliness and fear that accompanies the unknown, the waiting, the constant reassessment of personal values and goals, the guilt that follows denial, the need to help and be helped, coping with the flow of life that has suddenly been destroyed, the struggle to make realistic plans for the future, confronting astronomical medical expenses as huge as the national debt, the anguish in waiting to see if there will be breakthroughs in your loved one's condition all accompany the personal and family experience called head injury."
Years passed. Sarah made no further significant progress.
Sarah is in a pink shirt. Sarah holds her mom's right finger in her left hand, tight.
"Hold your head up, Sarah."
Betsy takes a towel and wipes Sarah's mouth.
James starts singing, "Hey Sarah, let's get with the program so you can run away. Where you want to go?"
Sarah mouths words.
James: "What did you say? 'I don't know'?
"I'll bet we can find somewhere to go."
Four years ago, Pat Rincon came to work at Golden Plains. Her job was to distribute medicine, until she dressed as a clown for a party. Sharon Kuepker, the administrator, decided Pat was in the wrong job. She changed Pat's job to director of activities.
Pat wasn't trained in speech therapy, neurology, brain damage, but she could see people beyond the drool and the incapacitation. She could hear voices silenced by stroke, could see into the vacuum of Alzheimer's. Could hear silent, frozen Sarah speak. She was just a tool, she said.
"When God created us, he created us as angels," Pat says. "You choose to be good or bad. In this profession, you have to love it. You have to have a heart for it. If you don't have a heart for it, you don't belong here."
The nursing home smelled like pureed vegetables and Band-Aids and salve and healing and green Jell-O. Some residents scooted around in their wheelchairs, playing bingo in the living room. But not between 1:30 and 3:30. That was when Pat worked with her special Rainbow Club, membership of four: those who did not or could not speak.
She believed there was something inside each one that wanted to come out.
Pat says she would stroke Sarah's face. Cradle her head like a baby and coooooo: "Say 'I love you.'
"Say: 'Who am I?' Say, 'My name is SAAARAH.' Yes, that's right. 'SARah. SarAAAH.' "
For four years, Pat cooooooed at Sarah, for 20 minutes a day, listening to Sarah's silent language, filling her patient with the kind of love that strangers reserve for people and things that cannot speak for themselves.
If Sarah made any sound, Pat would praise her, "Yes, that's right. You got it. I love you, Sarah. Do you love Pat?"
Sarah would blink.
The sessions were intense, with Pat looking deep into Sarah's eyes, trying to penetrate, break that lock on her voice.
"Are you glad to see me?" Pat would say. "Look at that smile. Now relax your arm. Relax, sweetheart. Say, my name is Sarah. Say, I'm hungry. Say, I'm thirsty. Say, I want to eat. I want to talk. Are you ready to talk? Yes, you are ready to talk."
Sarah would blink. And deep inside that face in which others saw only blank stares, Pat Rincon saw a flicker.Finding Voice
Nobody knows how or why, but Sarah began screaming three years ago.
It was as if the scream she should have screamed when Doug Doman's car hit her was delayed.
"They were grotesque moans and groans, that carrying on," says James. "For 17 years there was nothing. It was so heart-rending, I used to leave here a basket case."
"It must have been some form of communication, like having a baby or an animal," Betsy says. "You know by their actions what they want, but you are only guessing."
Sarah would scream if her parents left. She would scream if the television was not on the right channel. At the Christmas party, she would scream, and staffers couldn't figure out whether she wanted to be there. Still, it was music to the ears of the people who had worked with her for so long. It was the end of silence.
Then on Jan. 12 this year, Sarah spoke.
Rincon says she was reading her a story "Cloud Nine," when another patient interrupted Pat, wanting a manicure. "As soon as I'm finished doing my Rainbow Club, I'll do your manicure," Pat said. "OOKAAAY?"
Behind her, Sarah said, "Ooookaaaaa."
Pat didn't skip a beat. She had believed Sarah would speak at some point.
She didn't even tell anybody.
She decided to teach Sarah a phrase. One of the Rainbow Club members passed away the day after Sarah spoke. At the memorial service, someone asked if anyone had anything to say. That was when Sarah said, in public, "I love you."
Patients and staff stopped and gathered around.
"I was in disbelief," said Jennifer Trammell, a nurse who had spent 20 years working with Sarah.
The staff worked with Sarah's speech nearly a month before calling her mother, who now lived in Cheney, about an hour away.
Betsy was at home when the phone rang. Jennifer recalls asking Betsy whether she was sitting down because somebody wanted to talk to her.
"Hi, Mom," said Sarah.
"At that point, 20 years dissolved," Betsy says. "Like I had seen her the night before. . . . I said, 'Is that you, Sarah?' "
" 'What you been doing?'
"Dad said, 'Who are you talking to?'
"I said, 'Sarah.' "
Betsy passed the phone to James.
"She said, 'Hi, Dad.' "
Betsy asked whether Sarah needed anything.
"More makeup," Sarah said.
The physical therapists stretch Sarah's limbs, trying to loosen her muscles and retrain her brain for motor control. The PT asks Sarah to count. She mouths numbers.
Sarah's dad cheers her on: "Say your numbers with conviction! You have to be determined. Say, 'Sarah is going to hold her head up.' Say, 'Sarah can DO it!' "
Sarah's mother is sitting at her feet.
Since Sarah started talking, the state has kicked in money for more therapy, and in May she had surgery to uncurl her feet and loosen her arms. She still cannot move on her own. The prognosis is that she won't walk. But then they said she wouldn't talk.
There have been other awakenings. In Seymour, Tex., Gene Tipps fell into a semiconscious state after an automobile accident in 1967. Eight years later, after gallbladder surgery, Tipps sat straight up and said: "Mother, what has Marybell" -- the beautician -- "what has she put in your hair? She has turned it white."
Even some in the scientific community call them that. In Winfield, Ark., a truck rolled over Tracy Gaskill in 2002, leaving her in a coma. Last April, she began speaking.
Terri Schiavo's case was different. She was in a "vegetative state," when only the brain stem, which controls involuntary functions such as heartbeat, works.
The Scantlins were never interested in Sarah's story getting entangled in Terri Schiavo's.
"They are not remotely connected," James Scantlin says. "We turned down Larry King. And Fox. The religious media said she woke from a coma after 20 years. She was in a coma one month. . . . The Schiavos called us. We didn't return the calls.
"Sarah's story is a story of hope and expectation, like a phoenix rising again. In this dreadful, unhappy confused time we live in, it is a story of hope."
Speech therapist: "Let's work on some of these. Say 'hawk.' "
Speech therapist: "No, I want a good 'hawk.' A good 'k.' Get the tongue up in the back . . . ."
The therapist leans in and fires these words at Sarah: "Pin, pipe, pay, pass, pot, pie, open, paper, cup."
Sarah: "Pii, piii, pa."
Rest. She continues: "Cup."
She stops. She is exhausted. The words have taken a lot out of her.
When the news broke that a brain-damaged patient had spoken her first words in 20 years, the curious from around the country came to witness. "It is really the miracle that every parent or brother in this situation looks for," said Sarah's doctor, Lisa McPeak, director of rehabilitation medicine at the University of Kansas Hospital.
As to what actually occurred, the doctor says, medicine cannot explain. "The reason it is difficult to say is there are so few cases of this no one has ever really looked at it. . . . It just seems she was able to finally put together a communication system that was effective. Whether there was neural growth, which is unusual, or she learned to use channels already there in an efficient way, or whether she developed a new channel of electrical or neural hormonal flow in her brain, I can't answer."
When Sarah speaks, it's difficult to understand what she is saying, but those familiar seem to figure out her words.
When Sarah started talking, they asked her where she had been, what she remembered.
Somebody asked her how old she was.
"I'm 18," her brother, Jim, recalls her trying to say.
"You are not 18, Sarah," he told her.
So she conceded: "I'm 22."
"No, you are 38."
But Sarah insisted she was 22.
"She missed a long time," her dad says. "She missed delightful periods of her life. I said if she wants to be 22, let her be 22."
In May, Sarah turned 39.
Her mother asked if she was aware of 9/11.
"I said, do you know about New York? She said, 'Yeah.' She said, 'Airplanes. Buildings. Smoke.' I said, 'Anything else?' She said, 'No.' I said, 'Do you know about Oklahoma City?' She said, 'Children. Hospitals.' "
People assumed she knew about them because her television was on, imprinting images in her brain.
Betsy asked Sarah what it was like, being locked in.
"I said, Sarah, were you scared? She said, 'No. Frustrated.' "
"She remembers the accident," her father recalls. "She says, 'Yes, hit by a car.' She says, 'I could have left.' "
Left the road to avoid being hit? Her father thinks she means left as in died.
A friend from high school, Lori, asked, "Why didn't you?"
Her father interprets Sarah's answer as: "I wanted to stay and talk to the people I loved."The Long Way Home
They say the deeper a pit sorrow carves, the greater capacity one has for joy.
James and Betsy are almost giddy now. They tease each other. They tease Sarah. Talk to her like she really is back. "Hey," Betsy says after returning from lunch. "Sarah, what you been doing?"
She has told her parents, "I want to go home."
"Where is home?" Betsy says. "You probably mean the house you grew up in. Sarah, there isn't a house. We sold it."
But Sarah just says: "Home. I want to go home."
So Betsy and James Scantlin take a trip back to the old house, not sure they can find what is left of what used to be there.
James is driving. Betsy is riding in the front passenger seat with her shoes off. She puts her feet up on the dashboard, and you can see them as a young couple, wild about each other.
James takes a left. He remembers how, after Sarah's accident, he spent the longest time padding around the house, refusing to go into her room.
"I finally built up the nerve. I said, 'Someday, you have to face it.' I opened the door and it was like the night of the accident," James says.
Sarah had written a note to herself, one of her famous lists. "1. Finish paper for class. 2. Go by JUCO bookstore. 3. Get Dragon Doll Uniform. 4. Clean my room -- maybe????'
"I was laughing and crying," James says. "That was typical."
They take a left on Wilson Road.
James is anticipating the emotions. "This is going to be really strange."
Betsy: "Well, there is the strawberry patch. Go on up. See these trees. Those are our trees."
James: "Our house was right here. Those are the trees I planted."
Betsy: "Stop right here."
"Sarah," James says aloud, "those are your trees. Okay, there is nothing else. Our house was right there where the damned highway is. They were good times, Mother. But so are they now."Sweet Dreams
Back at Golden Plains, the big Kansas sun is sinking, sinking so big in the Kansas sky, bigger than other places in this country because the horizon is so broad. You can stand in one place and look across the state, people say. The horizon pulls up its blue veil, and the pink sun sinks outside Sarah's window.
Sarah is resting in that bed.
Rincon wakes her. "Hello, Sarah," she says.
"Hello," Sarah strains, her eyes blinking.
Rincon gives Sarah a kiss on the cheek. "Do you love Pat?
"Yes, because Pat loves you. Pat is always good to you. Why? Because Pat wants you to be whole again. And do everything you should have done when you were a young girl. We're not going to waste anytime. Are we? 'Cause Miss Sarah is going to walk out of here one day."