Regaining her balance
By Story by Encarnacion Pyle Photos by Shari Lewis
At her 18th birthday party in March, Rachel Barezinsky's head is still misshapen from where surgeons removed part of her skull to relieve pressure. That portion was repaired the next month. With her at the party are from left, Margaret Hester, Petra Daitz and Tessa Acker (facing away).
Rachel pushes herself to strengthen her left leg by doing lifts during physical therapy at
Leftover cake was on the table, opened presents were at her feet, and handmade signs wishing her a happy 18th birthday hung throughout the house.
But 15 minutes after a four-hour surprise party, Rachel Barezinsky couldn't remember it.
In August, Rachel was shot in the head and shoulder while she and girlfriends were scaring themselves at a house in
"It's like part of my life has been erased," Rachel says. "No matter how hard I try to remember, it's all an empty void."
Therapists say her memory might improve, but they don't have a way to make it come back. They can only help her come up with ways to deal with the loss and trigger her memories.
Her friends, seven of whom threw the birthday party in March, sympathize with the hurdles Rachel faces but can't understand how such a special experience could evaporate from her brain so quickly.
They decorated the house for the party with streamers, posters and red and white balloons. They baked a cake and hid in the kitchen as her family brought her back home after dinner.
"Surprise!" they shouted.
After kissing and hugging everyone at the party, Rachel went into the basement to watch a video that her girlfriends had made of "the good days" before the shooting -- Rachel smiling in her Thomas Worthington cheerleading outfit and posing at the beach like a swimsuit model during a
Her stepmother, Drue Barezinsky, passed a roll of toilet paper around the room. "You know it's really bad when the movie is over and you're still crying," she said.
The girls gave Rachel presents. They twirled around the room as they sang and danced.
The night ended with Rachel posing for photos and then singing goofily, "I brought sexy back," pointing to the helmet that protected her skull. A friend had painted it lime green and decorated it with sparkly beads and a pink boa around the rim.
But when the last guest had left at 10:30 p.m., Drue asked Rachel how she enjoyed the evening and Rachel stared at her blank-faced.
"What did we do?" she asked.
Rachel doesn't remember being shot.
Sometimes she thought she had gotten hurt after driving into a kangaroo, falling out of a tree or being hit by lightning while flying a kite. Doctors say this kind of confabulation is common among people with brain injuries because they are trying to fill in the gaps.
Rachel asked what had happened days after the shooting.
"I told her she got shot, and a tear rolled down her cheek," Drue said. "I don't know if she was crying or had watery eyes, but I'll never forget it."
Rachel doesn't remember that moment, either. She also doesn't remember her first big event after the shooting.
A few weeks after being transferred from
At halftime, she was wheeled onto the football field and crowned queen as her classmates cheered wildly. Many of her friends and their parents wiped away tears.
The next morning, Rachel didn't remember any of it.
That day, a doctor told Rachel's father that her memory might not get much better. Although she can remember events from the distant past, she likely will continue to have problems remembering things that happened after the shooting.
"I was still optimistic, but she stuck a knife into my stomach and brought me down," Greg Barezinsky said. "I never cried so hard. She tried to get me to look at the CAT scan, which I knew showed devastating injuries, but I couldn't do it. It would have killed me."
Because of the damage to her brain, Rachel has had to learn how to use her left arm and leg again. Her muscles have tightened -- a common problem for people recovering from a traumatic brain injury -- causing the left side of her body to become rigid and difficult to move.
Even when she is relaxing, her left arm dangles stiffly at her side, her wrist bent and her fingers clenched into a fist.
When she began walking again, Rachel swung her left leg around without bending her knee. She still wears a brace, from ankle to just below the knee, to keep her from falling on her face.
A bullet also hit Rachel's right shoulder, breaking into three parts, but that has caused no continuing problems.
She has made a lot of progress since she started physical therapy in September, but even simple things -- buttoning a shirt, picking up a fork or taking a shower -- take tremendous willpower.
Still, she was determined to get better, to be ready for senior prom, spirit week and graduation -- to lead a normal life.
"Rachel has problems with short-term memory loss, decreased muscle control, poor balance and weakness on her left side, but she never says she can't do something," said her physical therapist, Stephanie Taranto. "She focuses on what she can do. And her recovery has been pretty impressive."
While getting ready for school one morning in May, Rachel sat on the edge of her bed trying to unclench her left fist long enough to grab her deodorant.
"Come on lefty, open up," she said.
Grunting, she managed to extend her thumb just far enough to wedge the deodorant into her barely opened fist.
She threw her good arm straight into the air and -- counting "one, two, three" -- swung her left hand around to dab her armpit.
"Good girl," said her mother, Amy Barezinsky. "It's taken months, but you've really got that movement down."
Eager to get dressed, Rachel tried poking her head and arm through her shirt at the same time.
"Help, I can't find the opening," she cried, tangled in a wad of tangerine fabric. "I'm lost, and without some help I'll never be found."
"Come look in the mirror," her mother urged as she straightened Rachel's blouse. "See if the shirt is how you want it."
"You're the greatest mom in the world," Rachel said and blew a kiss at the mirror. "Someday, I'll be able to do this without your help."
"Someday soon," Amy said.
Rachel's determination has been extraordinary since the beginning.
She was disoriented in the days after the shooting. She didn't know what had happened, where she was or why her loved ones were draped over her bed praying.
But she had an important question to ask: How was her friend?
"She wrote 'Tessa?' and made a smiley face," her father said. "I don't know if she thought they had been in a car accident or if she remembered that Tessa's was the last comforting voice she heard before losing consciousness."
Tessa Acker, 18, had driven her and three of their friends to the house at
"As soon as she knew Tessa was OK, she wrote, 'Let's go home now!' " Greg said. "She didn't care that her head was wrapped in a bandage, her right eye was swollen shut or she was connected to a bunch of tubes and beeping machines. She wanted to go home."
Barely able to stay awake, she squeezed their hands and gave them a thumbs up.
Of all the girls who went to the house that night, Rachel had the physical and emotional strength to survive being shot, Amy said.
But as Rachel started to improve, her parents were worried about her happy, almost carefree attitude.
She didn't complain. She didn't cry. And when doctors woke her up to ask her to wiggle her fingers and toes as part of hourly checks to see how her brain was functioning, she smiled even though she had no feeling in her left arm or leg.
"I couldn't help but wonder if she didn't get the extent of her injuries," Drue said. "But later, when the Thomas Worthington football team lost to their archrivals,
Rachel has continued to look at life with a "glass is half-full" attitude, said her father.
"The worst thing she ever said at the hospital is, 'This sucks, but I have to go on with a bad situation.' "
Just weeks into her hospital stay, Rachel did what she could to return to the things that were important to her before the shooting. For instance, she asked her mother to shave her legs and paint her toenails so she could feel pretty.
Rachel spent 13 weeks in the hospital before going home in November. By mid-December, she returned to school with the help of a special-education aide, Heather Miller.
In the months that followed, she developed a routine to work on her problems.
She exercises with her father in the mornings. Until summer, she went to classes with Miller, taking catnaps on a couch in a teacher's office to make it through the day. And in the afternoons, she and her mother alternate between working out in a gym and therapy at Children's Hospital.
During one therapy session, she and her speech pathologist, Jenny Lundine, played Mastermind, a board game with colored pegs that could help her with her logic skills.
One player, the code maker, chooses a pattern for the colored pegs. The code breaker then tries to guess the pattern, in both order and color, within 12 turns.
After several games, Lundine had Rachel write what they did in her memory book, a notebook she carries everywhere.
"Speech: With Jenny, we played 'Mastermind' to work on our problem-solving. I won once!" Rachel scribbled.
Her pathologists say that jotting down a few words about her daily activities will give her memories more depth. Her parents are keeping scrapbooks of photographs, so she'll have visual triggers for her memories.
Before going home, she practiced basic eating skills with her occupational therapist, Susan Johnson.
As she struggled to open a snack pack of graham crackers with the curled fingers of her left hand, she said, "Come on, Rach, you're like FDR. You can do it."
With that rallying cry, she pushed a corner of the bag into her clenched left fist, squeezed her fingers tightly and tore the bag open with a flick of her other wrist.
"What can I say?" she told Johnson. "FDR was always inspirational."
The day after Rachel was shot, doctors removed part of her skull to relieve pressure because her brain was swelling. So for months, she had to wear a helmet.
That would end April 3 with an operation to replace the missing piece of her skull with a prosthetic made of a plastic ceramic.
"The biggest risk of the procedure is infection," said Dr. E. Antonio Chiocca, chairman of neurological surgery at
He cut along the jagged scar from Rachel's first brain surgery and then pulled back her scalp.
Finding the edges of her skull with his gloved fingers, Chiocca placed the skull cap over the gaping hole and secured it with several tiny titanium screws.
Her family and friends noticed almost immediate improvements in Rachel's memory and movements after the surgery. They are especially happy that she doesn't have as much trouble with compulsive behavior now.
For a while after the shooting, Rachel couldn't stop eating -- her parents called it the "shoveling phase."
She later made repetitive motions with her hands. In the middle of a conversation, she would look down, start praying and make the sign of the cross. Sometimes, she repeated the motion three or four times.
She has always acted silly, but her family says she has been more uninhibited since the shooting, burping and laughing heartily to get a reaction.
People with traumatic brain injuries often lose their ability to filter and don't think before they say or do things, said her mother, who is a school nurse.
"It's easy to look at Rachel and think everything is OK," Amy said. "The surreal has become real and the abnormal, normal."
Her medical team and family say Rachel's attitude has been remarkable: She pushes through painful exercise and therapy sessions and seldom shows anger, defeat or frustration.
But her mom says the toll has occasionally shown.
A few times when they've been alone, Rachel has put her finger up to her head and pretended to shoot herself, Amy said. Other times, she has pretended to hang herself.
Her father says Rachel's just joking around, but he knows that she questions what will become of her.
Once while being tucked into bed, Rachel said to her stepmother, "Drue, I need you to tell me something: Am I going to be normal again?"
A few days later, she asked her father if she was going to be like the severely disabled and medically fragile children in Drue's special-education class.
He told her how far she'd come, from the brink of death to homecoming queen.
Another day, her mother told her: "You'll get wherever you're going and do whatever you want in life. Your brain is healing."
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