When Rachel Brister was in the sixth grade, she fell asleep one day during class. It was such a deep sleep that teachers couldn't awaken her. She was comatose.
Rachel was taken to the hospital in Granbury and then by air ambulance to a medical center in Dallas. At first doctors didn't know what to make of her illness. It took four more times of her "going down" before Rachel was was diagnosed with basilar migraine with epileptic seizure syndrome. She suffers from severe migraines that usually signal the onset of an epileptic seizure.
“It's basically the artery in the back of my head constricts and doesn't allow the blood” to flow to both sides of the body, Rachel said.
"Oh, it hurts," she said of the migraine. "It's a very intense headache. You can't really think clearly. It feels like tons and tons of pressure" on the back of the head.
The stereotype of epileptic seizures is that people fall to the floor and shake. But Rachel's jaw locks and she stiffens, her mother said.
"She can't talk, she can't talk," Penny said. "But she can cry. You can see the tears."
Sometimes after a seizure Rachel can't use one hand and has to switch to the other. She has learned to become ambidextrous.
Rachel, who is 14 with big blue eyes and freckles across her nose and cheeks, has had to learn other things most teenagers don't have to think about much. Like where she would be buried if she died and what would happen to her family.
She has been living with pain and with the constant threat of having another seizure for so long that Rachel speaks matter-of-factly about her illness. She sometimes asks, “Why me?” and wonders if, as she put it, she has an "expiration date." Penny, who teaches music at Glen Rose Intermediate School, said the biggest risks to Rachel, in addition to falling and hurting herself, are stroke and aneurysm.
But there is hope that Rachel will be able to live a life without such pain and trauma. Surgery could help her live a normal life. Her pediatric neurosurgeon, Dr. Stephen Linder, wants to perform two operations, one temporary and the other permanent, that involves equipping Rachel with a neurostimulator.
The temporary stage is all external. The surgeon will insert wires into her head and connect them to a battery pack that Rachel will wear on her hip. She can control the current to get rid of her headaches. If that works, then the neurostimulator can be implanted permanently. The connection will go down Rachel's spine and a controller will be implanted in her lower back where it won't be seen.
Rachel and her family are very hopeful that the surgery could help address her migraines.The trouble is, the Brister's health insurance company, Blue Cross Blue Shield of Texas, won't cover the surgical procedures. The temporary one will cost an estimated $13,000 and the permanent one will cost $65,000. The LDL Educational Resource Foundation offered to pay for the first surgery. But if that happened, the insurance company wouldn't pay for the second one, Penny said.
"My hands are being tied while she endures the pain each week," she added.
Penny said the insurance company told her that "we had not exhausted all conventional means" of treatment. "But at the rate we're going to the hospital, it doesn't make sense to me."
That prompted friends to step in and help. Penny' fellow school bus drivers Tammy Gomez, Karen Davenport and Yvette Whatley have organized a benefit for the Brister family this Saturday. A dinner and live auction will be held at the Somervell County Citizens Center beginning at 6 p.m. and lasting until 11 p.m. The cost is $10 per person at the door.
Gabriel to the rescue
Rachel has received help of another kind. A special friend and helpmate unexpectedly came into her life. His name is Gabriel, a 6-month-old service dog in training who has become Rachel's almost constant companion.
Gabriel, a Great Pyranees, can sense the seizure coming on four minutes before they happen, Penny and Rachel said. After he's trained, Gabriel will be able to call 911 by pressing his paw on a button. When he senses that Rachel is “going down,” he will get right next to her to prevent her from falling.If Rachel begins to have a seizure at night and Gabriel senses it, he will lick her and bark to alert her family.
“He loves us all,” Penny said. “He's a great asset to the family. When he knows she's sick he won't leave her side.
“He's the God dog,” she added with a smile.
Rachel's counselor and pain management therapist, Paula Schirman of Granbury, located the service dog in Oklahoma City. Gabriel is in training at Paws2Play in Acton. He sleeps in a "The dog took an invisible disease and made it visible," Penny said.
As Rachel's symptoms have progressed, it's become harder to predict how they will occur, Penny said. The migraines and seizures don't always go together.
"The seizures morphed over time," Penny said. "Something different would happen. It's been hard to know what triggers what."
Students and teachers in school are helping Rachel, too, now that they understand. But first teachers "had to educate the kids" about Rachel's disorder, Penny said.
"It was a big challenge," she added. "The counselor talked to them when Rachel was in the hospital. Then one day the kids witnessed a seizure in class. When they had to pick her up, it changed their perception. It scared them."
If Rachel were to pass out and have to be transported by ambulance, Gabriel would not be able to go with her. So friends like Jordan Dusek, Kasey Hubbard and Lily Tunnel will take care of him in her absence.
Friends also have helped her cope, Rachel said.
"They have been there for me emotionally," she added.
And there are certain things Rachel cannot do.
"I can't pick up stuff," she said. But that doesn't let her completely off the hook.
"I still have to clean my room," she said with a grin.
After Rachel has a seizure, it can take up to four days to recover. She has missed 80 to 90 days this year, but still got all her credits and this fall will be in the sophomore class at Glen Rose High School.
"The teachers have learned to work with her," Penny said. "That's the awesome part."
She singled out Jackie Drake, who worked with Rachel after a seizure left her with no memory. Rachel had to learn to read all over again. It took about a year.
"I can't even begin to describe what this community has done" to help, Penny said.
Toll on family
Coping with Rachel's illness has taken a financial and psychological toll on her family as well. Her father, David, who is a teacher in Acton, and mother work hard to pay the mounting medical bills.
"My mom's last paycheck was $1,500 short" of covering the bills, Rachel said.
Her sister, Ariel, who is 18, and her brother, David, who is 16, also have made sacrifices. Both are student at GRHS.
The hardest part of dealing with Rachel's illness has been giving up school, Ariel said. When Rachel has a seizure, someone has to stay with her.
"We miss a lot of school," Ariel said.
Asked how she feels about giving up things to help her sister, though, Ariel said, "I don't mind it at all."
Rachel's medical problem has inspired her to want to become a doctor.
"The hardest thing on the older two is the loss of Mom and Dad," Rachel added. "Those two pull the weight more than we can ever ask."
The family's Jewish faith also has sustained them. A rabbi once told Rachel, "Just because it hurts doesn't mean it's bad." She pondered that remark for a long time and came up with her own interpretation of what that statement meant.
"It gives me hope," she said. "And it brings me a whole lot closer to God."
Penny said living with Rachel's disorder has drawn the family closer as well.
"As a family, we can live in a tent at this point and as long as we have each other, I know we can make it," she said.
A difficult diagnosis
Getting the correct diagnosis was one obstacle facing Rachel. The other one was finding the right medications.
Doctors at first prescribed drugs that had severe side effects. The medications so severely constricted the blood in her head that Rachel almost lost her sight and hearing, Penny said. Rachel was taking 10 pills a day at one time.
Now she takes a drug called DHE, short for dihydroergotamine mesylate. One of the first drugs used to treat migraines, it's administered by IV, which requires Rachel to make a weekly trip to her health care provider in Granbury and to spend several hours letting the drug drip into her veins. It has to be a slow drip because it burns so badly.
According to MAGNUM, the Migraine Awareness Group: A National Understanding for Migraineurs, the basilar migraine originates from the brain stem or from both occipital lobes in the brain. In half of the cases, as in Rachel's, motor weakness and loss of consciousness occurs. Basilar migraine is an "uncommon disorder," the organization continued. The illness tends to peak during adolescence.
What's even rarer is to have basilar migraine paired with epileptic seizure syndrome.
Dr. Linder calls Rachel his "miracle child," Penny said. She is a survivor and not willing to give up.
Rachel has dreams of her own. She wants to attend the Julliard School, the famed arts conservatory in New York.
A soprano, Rachel sings with the school choir. She admires singers Brad Paisley and Carrie Underwood and wants to become a recording artist as well. She also would like to start signing the national anthem at sporting events.
Penny recalled watching the first season of "American Idol" when Texas' Kelly Clarkson won the national singing competition.
"Mom, do you think I can do that?" Rachel asked.
"I bet you can," Penny replied.
For Rachel, the surgery represents a chance to start over.
"I hope to get a new life, a new beginning," she said. She is counting on people in Somervell County to help her do just that.