By Cathy Harasta
The Texas Catholic
Debbie Bane rests a spiral-bound notebook on her lap and touches its unassuming dove-gray cover with tenderness and reluctance.
Her husband, John, found it only this morning.
Their eyes say that maybe it’s too soon, on this last day of November, to see what’s inside the notebook. Debbie hesitates before taking that next step of flipping open the cover. That might mean absorbing words that they never will hear spoken out loud by their author, their son, Michael.
Michael, diagnosed with nocturnal epilepsy in 2005, had been writing a book, making notes as he had time. He died on Nov. 9 after apparently suffering a seizure.
He’d told his family that children and young adults who shared his medical condition needed someone to tell them not to be afraid. They needed a book written just for them, by one of them.
John looks out the living-room window toward the front yard, where a flower bed encircles a Victorian lamppost and breeze-driven leaves dance on the sidewalk.
Michael was in the second grade when he moved with Debbie, John and his older brother, Jonathan, into this pleasant East Dallas house with its shady yard and reassuring feel.
On this day, cube-shaped tissue boxes stand like sentries on the polished tabletops, a couple on the coffee table, one near a lamp where Debbie sits with the notebook that reveals, as she opens it, her son’s printed prose.
It is more of a lifeline than a book outline.
As she reads aloud from the pages, Debbie can reach the tissue box, which is a good thing because unexpected tears come right along with the unrelenting ones.
John clears his throat as Debbie reads aloud a particularly stirring line:
“…I hope I have a long life and that I am still a lot of fun when I’m older…” (June 8, 2011.)
Three weeks have passed since something made Debbie go into Michael’s bedroom to check on the 24-year-old in the wee hours.
It was the same “something” that had compelled her to worry about Michael’s every sleeping moment since he was diagnosed with nocturnal epilepsy when he was a senior at Bishop Lynch Catholic High School.
Debbie and John are thinking about the paradox now, about how sleep usually is the bastion of restorative peace instead of a landscape of dread. For nocturnal epilepsy sufferers, sleep is a perilous concept. For their loved ones, fear is the subtext of every waking hour.
All of Michael’s seizures occurred while he was asleep. He had four or five a year since the first one, which happened while Michael was taking a nap at his grandmother’s house on Aug. 6, 2005, John said.
John said that a seizure’s impact on muscles left Michael extremely sore for days after an occurrence. He wore a special mouthpiece to prevent him from biting his tongue. His dad said that Michael would fall out of bed and suffer bruises. He couldn’t hear people speaking to him, and he didn’t recall what happened during the seizures, John said.
“We were terrified every night at the thought of going to bed,” John says. “I called him all the time.”
When Michael was in west Texas at South Plains College and Texas Tech University, his parents felt great anguish but knew how much Michael craved a normal life, how determined he was to be his cheerful self, talkative and eager to raise awareness of epilepsy.
“He always called me ‘Pops,’ you know, instead of ‘Dad,’ ” John says suddenly, laughing a little and then reaching for a tissue. “Michael was an Eagle Scout, you know. He worked at just about every kind of job except lifeguard. He couldn’t scuba-dive. But because he only had seizures when he was asleep, he was able to have a driver’s license. That was good.”
They sit for a moment in silence, both smiling slightly.
Their laughter breaks the silence as John tells of Michael’s peace-making nature. John and Debbie recently had disagreed on some minor, forgotten matter, John says, a sheepish grin trying to make its way across his face. Michael had told them he wanted to be called
“Switzerland”—the symbol of neutrality—until his parents settled the spat.
Their Catholic faith comforted them, they said, through the process of Michael’s neurology consultations, numerous tests including spinal taps, and medication changes.
They felt overwhelmed by the large and loving turnout at Michael’s Celebration of Life Mass at St. Patrick Catholic Church on Nov. 13, John says as he glances toward a family photograph near the front window.
Michael, who attended St. Philip the Apostle Catholic School before Bishop Lynch, enjoyed spending time with members of the Knights of Columbus Council 799. He officially became a Knight in the fall, but Mike Hill, the council’s Grand Knight, said that Michael truly grew up in the Knights and shared his dad’s love of the organization.
“Here was a 24-year-old kid who got it as far as what was important in life,” Hill told The Texas Catholic. “He was a sweet kid who never had a negative thing to say about anybody. He was a key contributor to Council 799. His becoming a Knight was the icing on the cake.
“I grieve for the family, but I know Michael is in paradise.”
Debbie would stay up nights with Michael, talking and talking on the back porch.
“At first, he was angry,” she says. “I would tell him, ‘There was a reason why God wanted you to have this.’ And I think that God looks down and says, ‘Where can I place this special child?’ ”
Michael’s brother Jonathan remains angry about how few answers the family received about Michael’s condition. That was the reason Michael became such a spirited champion of the epilepsy awareness cause, Jonathan told The Texas Catholic.
“I’ve been upset and angry about this for a long time,” said Jonathan by phone from Austin, where he lives and works in real estate. “A teen-aged kid isn’t supposed to have seizures. Michael was definitely passionate about epilepsy education. He could recite all the statistics for children and he knew everything about it.”
According to the Epilepsy Foundation, epilepsy is a “…medical condition that produces seizures affecting a variety of mental and physical functions…Seizures happen when clusters of nerve cells in the brain signal abnormally…”
Epilepsy affects 2.2 million Americans, including more than 300,000 children under age 15, according to the U.S. Centers for Disease Control and Prevention.
Jonathan said that he brainstormed with Michael about the book once his brother mentioned his goal.
“It was going to be a book about how not to be afraid,” Jonathan said. “He hated having epilepsy but he tried to make light of it. It makes you think about all that you have and should be grateful for. His book was about how to be a happy person.
“It’s like he’s gone, but he’s not.”
The book was brewing in a lot of places, not just within the pages of the journal-style notebook that his dad found on the morning of Nov. 30.
The book was brewing in Michael’s conversations with his brother and in the editorial he wrote for the school paper at South Plains College, a piece that described his condition and instructed readers on how to help if they encounter a person having a seizure.
Michael’s MacBook computer contained a chapter he had written while he was a college sophomore. The narrative detailed his recollection of his first seizure’s aftermath.
The book was brewing when Michael interned at the epilepsy foundation in West Texas, appeared on television in Lubbock to talk about the medical condition and organized a week-long summer camp for children with epilepsy.
In addition to fundraising for epilepsy research, Michael offered candor and an unselfconscious willingness to show this disease to the world.
Bobbie Taylor, a Bane family friend, said she never will forget that Michael did not let a set of electrodes strapped to his head keep him from attending a party.
“Michael came to the party carrying a battery pack,” she told The Texas Catholic. “He went and did a three-day sleep study, but nothing came of it.”
She said that Michael confided in her about his frustrations with studies and treatments that offered no concrete solutions. But his smile never left his face, she said.
“He was a genuinely good, friendly kid,” she said. “He was a gentle soul.”
He also was a good-natured, energetic employee, said Sergio Zarate, the operations manager at Wolfgang Puck Catering in Dallas, where Michael worked after he moved home to take a year off from college.
“We miss him so much,” Zarate said. “He was learning the whole business. He enjoyed it and was extremely helpful.”
John says that Michael did everything in his power to make people happy.
Debbie reads a line from his journal that underscores Michael’s strength:
“…Even if it is a curse, I wouldn’t have epilepsy if I couldn’t handle it…” (June 14, 2011.)
Michael’s autopsy found no abnormalities, his father said, but some test results will not be available for several weeks.
It occurs to John that Michael always was the first to figure out the best Christmas presents for everyone on his list.
Debbie and John trade knowing looks and start to grin as they talk about Michael’s talent for being an inspired, considerate gift-giver.
Sometimes, he bought presents just to surprise people and light up their day.
John reaches into his pocket and pulls out his keys to look at the key-chain ornament that lights up and flashes the words, “No. 1 DAD.” Michael bought it for John during a trip the two took to Las Vegas 10 days before Michael died.
It was Michael’s first time to visit Las Vegas, where his father went every year for an automotive parts trade show related to his business.
“Michael met everyone on the Strip,” John says. “He had the time of his life.”
John looks at the key chain again before putting it back in his pocket.
Michael would have turned 25 on Dec. 16.
John says that he and Debbie didn’t immediately think about the fact that Michael’s death occurred during National Epilepsy Awareness Month.
“What he really wanted was to write this book for children,” Debbie says. “He loved children. Of course, he loved animals, too. And he could talk to someone who was 92 years old. He had great wit.”
She and John laugh softly.
Debbie again picks up the notebook of fragile hopes and sweet dreams.
John reaches out to touch it, this book whose author no longer needs to fear the fall of night.