'Never give up, never give in'
● By Steven Hoffman
It’s a Monday morning in mid-March and a miracle is about to happen in Marie Beattie’s kitchen.
She fastens her daughter, Corey, into an innovative, free-standing harness system that has been installed in the kitchen of the home. Corey stands up steadier and straighter than she has in more than five years. The harness system moves along a track and is specifically designed for her weight so that she can move the bar that is attached to two poles that run the length of the kitchen, giving her the ability to stand and walk around the room on her own. Marie says that the harness looks like something that Corey could wear while jumping out of an airplane, or perhaps zooming along a zipline, but its purpose is much more basic than that: it prevents Corey from losing her balance and falling. Marie stays close behind, but that is only a precaution.
Marie tells her daughter that she has eggs, fruit, yogurt, and cereal as breakfast options. Corey chooses the cereal. But instead of Marie getting the cereal for her daughter, as she would have last year or even last month, Corey starts moving on her own. She heads to the cabinet where the cereal bowls are located. She needs some help because the bowls are on a shelf that she can’t reach. Marie gets the bowl and hands it to her daughter. Next, Corey heads to the refrigerator, where she picks up the milk that she will need. She’s walking and holding a bowl simultaneously. A moment later, she is sitting at the table and pouring the cereal into a bowl and adding the milk. The chore is one that most twenty-three-year-olds do without thinking, but for Corey these tasks represent how far she has come since that fateful fall night in October of 2010.
“It’s been consistent progress, but super slow,” Marie explained. “She has never plateaued.”
There is no plateau in sight, either.
Marie asks Corey what their mantra is.
“Never give up, never give in,” Corey replied.
The accident and its aftermath
Corey enjoyed an evening spent line-dancing with friends on Oct. 2, 2010, a Saturday. Her 18th birthday was three weeks away. She was a senior at Avon Grove High School, and with her time as a high school student dwindling to just a few months, she was looking forward to studying culinary arts at Johnson & Wales University in Rhode Island.
The friends were on their way home shortly after 1 a.m. As they pulled up to the intersection of Route 841 and Route 896, they were about a mile from Corey’s house in New London Township. No one knows exactly how the accident occurred, but as the vehicle that Corey was riding in attempted to make a left turn onto Route 896, it was struck by a truck heading north on Route 896. The other passenger in the car suffered injuries, but Corey was the one most seriously injured. Emergency responders worked for two hours to free her from the wreckage before she was airlifted to the Christiana Hospital.
Corey suffered a broken neck, a fractured clavicle, multiple pelvic fractures, and a fracture of the right femur, but it was the global brain trauma that would alter the course of her life. In the days immediately following the accident, Corey couldn't squeeze her mother's hand or tell her if she was scared.
While Corey was still laying in a bed in the intensive care unit, Marie decided that she was going to treat her like the day before the accident. She also decided that, for her daughter’s sake, she would never accept what others said is possible. She wanted her daughter to live the life that she wanted before the accident—to graduate from high school, to become a chef, to get married.
“On the outside, you have to present the belief that, of course she’s going to walk again, and go to college,” Marie explained, “but inside, there’s a secret place where you have doubts. But then you have hope, and you have to keep going.”
Traumatic brain injuries
Corey spent three weeks in the intensive care unit hooked up to machines to keep her alive. It was during this time that Marie started to learn about the true impact that traumatic brain injuries can have.
“We had no idea what a traumatic brain injury was,” Marie recalled. “In Hollywood, on TV, when a person comes out of a coma, they wake up, stand up, and remember almost everything.”
Real life is not like Hollywood.
After spending three weeks in intensive care, Corey was transferred to the Bryn Mawr Rehabilitation Hospital for acute care rehabilitation on Oct. 22. Doctors cautioned Marie that it would be a long road to recovery for her daughter.
One of the challenges for doctors and researchers working to help traumatic brain injury survivors as they rehabilitate is the fact that no two injuries are exactly alike.
“Traumatic brain injuries are like a person's fingerprints—no two survivors are the same,” Marie explained.
The fact that each traumatic brain injury case is unique makes insurance issues that much more complicated as well.
In January of 2011, Marie was told that Corey would have to go home even though her daughter was in the earliest stages of rehabilitation. Marie fought to get more in-patient rehabilitation so that her daughter could re-learn how to do the simplest things—to hold her head up, to cough, or to blink.
“I knew that she would never get the level of rehabilitation that she needed at that point at home,” Marie explains. “They wanted her to go to a nursing home, but she was seriously disabled, and her age was an issue.”
Corey ended up receiving about seven months of in-patient rehabilitation when the national average is between 21 days and 100 days. Corey returned home in June of 2011 to start the next phase of therapy. She needed significant speech therapy and physical therapy, but she could only do so much. Once again, Marie had to work hard to get her daughter the therapeutic treatment that she needed—as much as 15 professional hours of therapy per week. Even though Marie was elated by each small step toward recovery, the progress was slow.
“I saw consistent progress,” Marie explained. “It was slow, but we saw something—speech, movement, cognitive awareness. Each day it was something. If she didn’t have the level of consistent rehabilitation then, she wouldn’t be where she is today.”
Marie has been an advocate for legislation that would require insurance companies to work with families to get the services that a traumatic brain injury survivor needs.
An inspiration to others
Soon after Corey suffered her injuries, Marie started keeping a blog at www.carepages.com to document her daughter's progress.
“We’ve been writing that for five years,” she said. “There are thousands of people following the story.”
Marie said that the family has received letters and emails from people all around the world who have been inspired by Corey’s story. Part of the reason that Marie writes the blog is because she wants to spread awareness about what families experience when a loved one suffers a traumatic brain injury.
“They call TBI the silent epidemic,” Marie explained. “The survivor is the most affected, but it impacts the whole family and her friends, too.”
Corey's sister, Caitlin, has been working with Jon Ristaino of Farmcat Media documenting her progress through photos and videos, some of which have been posted on YouTube and garnered thousands of views. Corey's older brother, John Paul, has been working on developing an auditory app that will help with auditory therapy.
Marie is advocating for legislation that would require insurance companies to work with families to get the services that a traumatic brain injury survivor needs.
She hopes that people will have a better understanding of what traumatic brain injury survivors live through.
“Traumatic brain injuries can happen to anyone—these injuries can come from playing sports, or from a fall, or from an accident. Strokes can cause them. Traumatic brain injuries can touch everybody. Advocacy is so critical. Once you injure your head you live with that for the rest of your life. Corey is the pebble in the water causing a ripple—her family, her friends, the community, people from all over have been affected by her story.”
The road to recovery widens
Last September, Marie arranged to take Corey to the Cerebrum Health Center in Dallas, Texas for a week of intensive therapy focusing on improving her vision. The Cerebrum Health Center has a special OVARD machine, which Marie said was reminiscent of something that NASA might have, that targets Corey’s vestibular system which affects balance and special orientation. She sits in the chair and spins at a specific angle, roll, and speed that targets her motion abilities, or motion profile.
At that point, Corey wasn’t able to stand for any length of time. But the therapy at the Cerebrum Health Center, which was targeted on the brain stem, greatly improved her balance and focus.
“What we found,” Marie explained, “is that she was standing straighter, walking better, and becoming more alert.”
The positive experiences at the Cerebrum Health Center were followed by the opportunity at the Go Baby Go Café. She was selected to be just the second person to work in the Go Baby Go Café on the University of Delaware STAR Campus in Newark, Del. Here, survivors of traumatic brain injuries utilize a body weight support system that was invented and developed by Enliten, LLC to work in a café. This would allow the individuals to receive physical therapy based on real-world actions in a setting that would allow for social interaction. Corey worked in the café for six hours a week for six weeks in November and December of 2015.
Dr. Cole Galloway, a University of Delaware professor in the physical therapy department, had been working for many years on research with children with developmental disabilities, and he approached Enliten about building a harness system that would improve the mobility of children who have difficulties walking or crawling on their own—hence, the name Go Baby Go. It also became apparent to researchers that the harness system could have wider purposes than simply aiding children who needed help walking or crawling. There could be benefits for people with traumatic brain injuries or the elderly—anyone who needed help with balance. Over time, Enliten developed the concept and built the system now used at the STAR Campus. Enliten also invented the portable system that was installed in Marie's home.
Devina Kumar, a PhD student in the Department of Physical Therapy at the University of Delaware, is leading two research projects under the Go Baby Go banner— the café and the harness house. She outlines some of the benefits of the harness system.
“This harness allows a person to walk in different directions while preventing falls,” Kumar explains. “It's easy to set up and is inexpensive. This low-tech device is perfect for people with traumatic brain injuries to set up in their home in order to give them some functional mobility and the chance to move around again.”
Marie said that she saw tremendous improvement in Corey during her time at the café.
“I have often said that watching Corey as her brain heals is like watching an old wooden foot-bridge being built,” she explains. “Each new connection is a plank. Unfortunately, not all the planks line up or are easily strung together. After all this time, there are still some planks that are missing. The café has helped her find her missing pieces. When Corey works in the café, her movements in the kiosk, coupled with the interaction with customers and her co-workers, ties each connection. The café has tied years of separate physical, occupational, speech, cognitive, emotional and behavioral therapies, immersing her in a real-world workplace. The strides that Corey made during the last five years has taken a giant leap forward with her work at the café.”
Goals for 2016
On Jan. 1 of this year, Marie and Corey talked about their plans for the year ahead. Corey's goals include walking under her own power, getting out of bed alone, going to the bathroom without assistance, to have no helpers coming in to care for her, to publish a cook, and to promote a book to Traumatic Brain Injury survivors. It's an ambitious list, to be sure, but things that once seemed impossible are now very much possible.
There are still challenges to overcome. Corey's short-term and long-term memory remains poor. If Corey is struggling to remember a recent visitor’s name, for example, Marie will ask her to describe the visitor’s hair.
Corey’s long-term memory has gaps also. Occasionally, she will ask her mother when she is going to get her driver’s license, as if she is still the effervescent high school cheerleader who was spending her weekends line-dancing with friends and dreaming of going off to college.
Another challenge, Marie explained, is Corey’s age—as someone between the ages of 18 and 45, she falls into what they call the “rehab gap.” People in this age group who are facing long rehabilitation face the added challenge of losing their place socially.
“All her friends moved away because they’ve gone to college and they have jobs,” Marie explained. “How do we get her back out into the community to meet friends? She wants everything that a normal twenty-three-year-old wants, but because of the injuries she’s still restricted. The harness system will help her daily rehab. She still has the dream of becoming a chef.”
Corey still goes to the Go Baby Go Cafe two days a week to cut up salads, make sandwiches, and run the cash register. At home, she is able to get her own breakfast and stand at the counter while she cuts up a salad. She is also collecting information for a cookbook that she is putting together.
During a recent fundraiser for the harness house at Not Your Average Joe's in Glen Mills, Corey was standing in a professional kitchen. There were certainly days during the last five years when Corey's dream of becoming a professional chef seemed far away.
“The objective with everything that Corey does now is to get her to do it for herself,” Marie explained. “To get her to be independent. Ultimately, all of this will be to get her back in a kitchen to be a chef.”
Corey nods her head in agreement at this and Marie smiles.
“There are days that can be really hard and frustrating,” Marie said, “but every day is another step forward.”
To contact Staff Writer Steven Hoffman, email firstname.lastname@example.org.