Finding strength in painful fragility
This column appeared in The Herald-Sun in June 2014:
A baccarat crystal knob seems an unlikely nemesis.
But that changes when your hands are fused into permanent fists.
Megan Barron realized too late – about the time the stall door clicked shut – that she couldn’t manipulate the knob. She was in a fancy restaurant in Washington, D.C., with her father and brother. Her smartphone? Still at the table.
“Sometimes, you just have to crawl yourself under a stall door,” she said during an interview on Wednesday. “No harm, no foul.”
Barron has lived all her 23 years with a condition called dystrophic epidermolysis bullosa. It’s inherited – not contagious – and prevents her body from producing a protein that’s needed to provide connecting tissue for skin and organs.
Younger patients afflicted with the condition are known as “butterfly children” because their skin is delicate and fragile.
But it seems to have toughened Barron over time.
“The condition brought out certain personality traits,” she said. “An inherent strength I wouldn’t have developed otherwise. And creativity, always having ways to solve problems, and not just with the disease and the physical impairments, but also learning how to take things in stride and picking your battles about what’s worth getting worked up over and what’s not.”
She was born in Pittsburgh, Pennsylvania, but moved to Florida when she was 9.
Middle school was difficult, she recalls. “Middle schoolers are just vicious in general,” she said. “Add an identifiable, visible difference into the mix and it’s so much worse. But I did have good friends who shielded me from a lot of it.”
Barron was second in her class when she graduated from Coral Springs High School. She moved to Durham to attend Duke University, where she helped found the Duke Disabilities Alliance. Barron graduated from Duke last year. She’s thinking about graduate school while her newly adopted cat, Mina, adjusts to life in the apartment.
She doesn’t drive, but works from her Durham apartment as a social media coordinator for the National Organization of Rare Diseases. She loves to binge watch Netflix foodie shows and enjoys coaching friends through cooking adventures in the kitchen, letting them be her surrogate hands.
Barron blogs. She got sidelined by illness for several months, though, so The Matter with Megan blog on WordPress (thematterwithmegan.wordpress.com) languished a while. She’s back at it now, writing recently: “We aren’t talking a little sick. It was bad, and threw me for more than I could shake. You would think that someone living with a rare genetic disorder causing more complications than a runaway marriage would be used to dealing with honest-to-god medical maladies. But I wasn’t. I spent months weak, tired and confused as to what was happening to my body, why it was happening to me and how I was ever going to put back together my interrupted life.”
She’d like to do more advocacy work and speak to others about EB and other rare conditions in search of viable treatments and cures.
“I want to tell these stories, not despairing or full of sorrow, although I do have bad days. Everybody does,” she said. “I’ve had bumps in the road, but my witty, acerbic sense of humor has been really helpful as a coping mechanism.”
As a child, she made lots of plans for a future when she was cured. That proved premature. But scientists continue to work on promising therapies.
She doesn’t hang a lot of wild optimism on the chances of a medicine that can halt or reverse EB, but Barron carries with her what she calls “realistic hopefulness.”
“I have hopes, dreams, everything I want out of my life, just like everyone else,” she said. “I just have a lot more hurdles to jump than the average person.”
Remembering a man who wouldn’t quit
This column appeared in The Herald-Sun in May 2014:
Michael Butts met his future wife in 2003 in the bookstore at Durham Technical Community College.
She needed a cassette recorder for a class in anatomy and physiology. She couldn’t find one.
The burly man – a formal football player at N.C. Central University who worked at the store even though it paid less than unemployment – asked if she needed help.
“I do not,” she said. “Thank you.”
Eventually, though, she conceded: “On second thought, I do need some help.”
Butts told her to look on the wall by the financial aid counter.
“I looked there,” she said.
Back and forth they went about whether a recorder could be found back there.
Finally, she asked: “How much do you want to bet?”
“How about your phone number?”
“What would you do with my phone number?” she asked.
“I don’t know,” he said. “Maybe I will hang it on my wall.”
She laughed, but agreed, confident that he wouldn’t find a recorder.
He returned 10 minutes later, recorder in hand.
“Where was it?” she asked.
“Where I said it was,” he lied. She called him on it. He confessed that he went back to find one in storage. “Either way, you have to give me that number.”
“I did,” Syreeta Butts said this week, more than a decade later. “I was attracted to his smile, mostly. He had beautiful teeth and a sweet, teddy bear kind of personality.”
He was easygoing, she said. Not intimidated by her. He called that night.
“We talked for about four or five hours on the phone like we had known each other all our lives,” she said. “It was permanent from then on.”
Michael Butts grew up in Riverside and Moreno Valley, California. He came to Durham on a scholarship to play college football at NCCU. He earned an undergraduate degree in psychology.
He married Syreeta in 2005, but never actually proposed. He just told her, matter-of-fact, the wedding would happen in the summer and they’d vacation in Jamaica in November. They had two sons together and she had two children from a previous relationship.
In May 2010, after returning to NCCU to pursue a master’s degree in mental-health counseling, Michael learned he had urethral adenocarcinoma – a cancer that came with dreadful labels like “rare,” “invasive” and “aggressive.” Doctors told her to plan the funeral.
Syreeta suggested that he put aside his pursuit of the advanced degree so he could focus instead on quality of life.
“I wanted him to do what he wanted when he wanted, not work or go to school or coach with the Durham Eagles or workout at the gym two times per day,” she said. “I did not want him to be stressed like that.”
Despite the grim diagnosis, Michael wouldn’t give up; wouldn’t quit. He was too proud. Too hopeful. Too committed. And doing all those things, it seemed, gave him the quality of life that Syreeta worried about.
“Cancer was not going to stop him,” she said. “I read somewhere that ‘commitment is doing what you said you would do long after the feeling is gone.’ He was committed.”
He wanted to help people with mental illness and improve their quality of life.
“Michael improved everyone’s life who he encountered, including mine” she said. “Because of him, I am a better mother, Christian, friend and co-worker.”
He taught their children gratitude and the value of hard work, strength and perseverance.
“Y’all must be glad y’all grew up poor, because that is all y’all talk about,” their oldest child once quipped.
Michael kept at it, living as though he’d be here for decades. He didn’t have time to sleep, he’d say. “I’ll sleep when I’m dead.”
He wouldn’t indulge in self-pity. He never sought sympathy. He wanted to be treated like anyone else.
“If you see me in a fight with a bear, don’t help me,” he said. “Help the bear!”
Michael Butts, 34, died April 16, just weeks before he would’ve received his master’s degree. The university conferred it to him posthumously, with Syreeta accepting on his behalf.
“It was such an honor,” she said. “I didn’t know if I should laugh, cry, shout or faint.”
His hard work and dedication paid off, she said.
“Our family is overjoyed to see the fruit of his labor,” she said. “This accomplishment has set a new standard for us, especially the children.”
Living in another world, not far away
This column appeared in The Herald-Sun in February 2014:
I live less than three miles up the Durham Freeway from where police say a man accidentally shot a baby with a gun stashed in the pocket of his hooded sweatshirt on Wednesday morning.
The only thing that’s liable to go off in one of my pockets is my phone, pinging as yet another Words with Friends challenge arrives.
That usually doesn’t hurt anything but my ego.
So why in the world would Arin Tavon Futrell pack a gun in his pocket while standing on the porch of his girlfriend’s house on Macon Street?
What was he thinking?
Lately, it feels like even though I don’t live far from where bad things are happening, I might as well live on another planet.
Wednesday night saw more mayhem around Northeast Durham and N.C. Central University, with three men shot in the leg inside of an hour. Plus the robberies Wednesday night and early Thursday.
On Feb. 1, Alfredo D. Jobel, 28, was gunned down on Liberty Street.
In another incident in February, three men broke into a business near Northgate Mall – even closer to home – and shot the owner, wounding him.
Last month, a man fired his gun into an SUV carrying little Jaeden Sharpe and his mother. Jaeden, just 9 years old, died in the attack.
In December, teen brothers who should’ve been in school were shot and badly wounded in a house on Grace Lane.
Meanwhile, in my native Florida, jurors apparently are convicting people for the black victims they fail to kill in the name of “standing their ground,” but acquitting them if their targets die.
I’ve never lived in a neighborhood where I felt like I might be a target for violence. In fact, it wasn’t until I bought a house in a middle-class suburb outside Tampa that someone stole my car and later abandoned it with their death-metal band cassette still stuck in the stereo.
So, it’s safe to say I can’t really ever know for sure what Futrell might have been thinking that morning. But what so many of us see in headlines, with the advantage of secure objectivity, people like him see at ground level, day after day.
Luckily, the 5-month-old girl’s injuries weren’t life threatening.
But I wish he didn’t live in a world where he felt it was necessary to own a gun, let alone keep it in his pocket the way someone like me instinctively totes around a smartphone.
I wish the most everyone else had to worry about was an opponent landing a Z on a triple-letter tile combined with a triple-word tile.
A long wait for justice
The following column appeared in The Herald-Sun in November 2013:
Jesse McBane and Patricia Mann saw a future together.
In 1971, he was an N.C. State student and she attended nursing school at Watts Hospital – now part of the N.C. School of Science and Mathematics campus within blocks of my home. He was 19; she was 20. They planned to marry.
On Feb. 11, on a cold, misty night, they went to a Valentine’s Day dance. Then they drove a car Jesse shared with his brother Marty to Crosdaile Country Club and parked near a pond.
Nearly two weeks later, they were found strangled, bound to an oak in an unpaved cul-de-sac just a couple of miles away over the Orange County line. It appeared that the killer repeatedly tightened and loosened the ropes around their necks, taking them to the brink of unconsciousness and bringing them back. It’s not clear how long that went on.
The murder drew detectives from the Orange County Sheriff’s Office, Durham County Sheriff’s Office, Durham Police Department and the State Bureau of Investigation. But in the past 42 years, none of those agencies has managed to crack the case.
A few years ago, Orange sheriff’s detective Tim Horn stumbled across a box of evidence from the cold case. He sifted through the reports and photographs of a crime committed when he was just a toddler. The case drew him in.
Working with fellow detective Dawn Hunter, he reached out to other agencies to collect more pieces of the puzzle.
“It’s like taking a novel, tearing the pages out, throwing them on the floor and then trying to put them back in a logical order,” Horn said.
In 1971, 40 years before planes crashing into buildings in a major American city would usher in a new age of inter-agency cooperation, different investigators could take a parochial approach to their work, play their cards close.
“They were all working on the case,” Horn said, “but none of them were really working together on it. They didn’t share information. Had they combined resources, in my opinion, this case would be closed.”
It was also 25 years before DNA evidence examination became common. Now, the SBI lab is studying evidence in this case for clues. “We are hopeful that it might yield something positive,” he said.
The detectives have reason to believe the killer may still be alive and, in fact, may still live or work in Durham.
On Dec. 29, 1995, a man called one of Jesse McBane’s relatives and, although he didn’t come right out and confess to killing them, said: “I’m responsible for their deaths.” Investigators traced the call to a pay phone at Loehmann’s Plaza on Hillandale Road – not far at all from Croasdaile Country Club.
Horn and Hunter think their suspect is a man in his 70s. They think he might even have been a suspect back in 1971, but authorities never managed to make a case against him. Perhaps the most persistent rumor is that it might have been a doctor affiliated with Watts Hospital.
Carolyn Spivey, a cousin of Patricia Mann’s who grew up with her almost like a sister, said this week that the worst part about the case after so many years is not knowing; a lack of closure.
“I really just think, even though it’s 42 years later, justice needs to be served,” Spivey said. “Their memory needs to be honored in a good way. This person feels a burden. I understand he has made phone calls. I just wish he would go ahead and confess and give the family peace.”
Know anything about this case? Give detectives Horn or Hunter a call at the Orange County Sheriff’s Office at 919-644-3050.
When life hands you a Fastpass
This column appeared in The Herald-Sun in 2013:
Janis Joplin wailed from Catherine’s pocket as Sam Eagle explained that he would perform a salute to all nations “but mostly America.”
It was Sunday afternoon, Memorial Day weekend, and we were in the middle of the theater at Disney’s Hollywood Studios for Muppetvision 3D when her phone rang. She had forgotten to switch it to silent mode.
We figured it was her brother calling as chaos broke out in Muppet Labs.
We let it go to voicemail.
Two days earlier, we woke up in a Quality Inn outside Florence, S.C.
My wife checked email on her iPhone and discovered a message from A Child’s Hope – a Raleigh agency that we’ve been working with for more than a year to try to adopt a baby.
The email informed us of an opportunity. A young woman had given birth to a baby on May 22. She and the birth father had chosen a couple from the agency’s website, but they gave every hopeful parent a chance to show their profile by 3 p.m.
We urged the agency to put our profile in front of the birth parents and asked them to show off our Facebook page too.
We’d been down this road before, though. We wouldn’t hear from the agency if the parents didn’t choose us. The next thing we would probably hear would be an announcement via email that another couple had been selected.
We had coped with rejection or, more accurately, non-selection, in the past. We could handle it again. Our philosophy: “We’ll get a kid when we get a kid. It’ll happen when it happens.”
We just wanted to make sure we were in the running.
Saturday came and went without any word.
“They probably didn’t choose us,” Catherine said. We had just returned to my parents’ home in Deltona from watching a softball game.
“Next time,” I said.
And when it happened, I thought, we would be waiting months for an expectant mother to give birth.
I wanted Sunday to be a big distraction for both of us.
So we went to Disney’s Hollywood Studios for Star Wars Weekend, because I’m a huge geek and I hadn’t been on the revamped Star Tours ride.
But I kept seeing the Jedi fathers and their Sith kids and the ever-patient wives trying to look normal around the nerds they loved. So much for the distraction – it just made me wish that Catherine and I had our own little one to tote around the park.
After lunch, we decided to dare the line for Star Tours. The digital sign indicated that we would be waiting 80 minutes. I led Catherine toward the left queue entrance, not realizing it was the Fastpass line.
“How many?” the attendant asked.
“Two,” I said.
“Do you have a Fastpass?”
“Oh, no, we don’t,” I said. “Sorry.”
We walked toward the 80-minute line. Catherine asked, “Should we do something else and come back later to see if the wait is shorter?”
I shook my head. “It could be even longer later. We came here for this. Might as well wait.”
That’s when I heard the attendant call to us: “Party of two?”
We walked back toward the young woman, who handed two small pieces of paper to us. She said, “A family had two extra Fastpasses, if you want them.”
Five minutes later, we were zooming through a galaxy far, far away, eluding the menacing Darth Vader and the infamous bounty hunter Boba Fett.
After the Muppet show, Catherine checked her phone. The call hadn’t been from her brother. It had been from a Charlotte phone number that she didn’t recognize.
We both checked our email and discovered messages from a social worker with the agency.
They wanted us to call immediately.
They never asked us to call for bad news.
“Oh, my God,” Catherine said, settling down onto a bench outside the theater.
She called Marisa, who explained that we had been the couple originally chosen by the birth parents.
“They looked at other profiles, but they kept coming back to you,” she said.
We got the happiest news we could ever receive in the happiest place on Earth.
And no waiting months for the child, either.
He would be ours within a week.
How’s that for a Fastpass?
Move over, Will Smith: we’ll crush those aliens
This column appeared in The St. Petersburg Times on July 13, 1997:
The Sol III Pathfinder, wrapped inside a giant ball of string, slams into the U-Save parking lot at 55 mph, bouncing over stunned pedestrians pushing grocery carts toward their cars, toppling the golden arches of the McDonald’s, and finally coming to rest at the corner of State Road 54 and U.S. 41.
The string unravels, a ramp deploys and a roving robot rolls onto the pavement.
It raises its high-gain antenna and begins sending images and analytical data back to the planet Vindaloo. . .
The kalfatz has landed. Dozens of tentacled, big-eyed aliens with pocket protectors cheer with multiple mouths as they watch the four-dimensional monitors on Vindaloo, 50 light-years from that mysterious blue-green planet known as Sol III.
The robot swivels its imager toward the confluence of two crowded throughways – originally thought to be canals when seen from orbit by Vindaloosian observation satellites – and sends back the first pictures of life on Sol III.
Odd creatures with colorful metallic exoskeletons, not terribly different from the kalfatz, save for the apparently parasitic creatures within – soft, fleshy and furry, with few appendages.
The kalfatz rover extends its X-ray spectrometer to the gritty, yellow-striped surface of the planet. The spectrometer detects high concentrations of petrochemicals, and an underground water supply rushing south.
The Vindaloosian scientists, meanwhile, compile a composite hologram of the landing site to determine which objects to investigate.
The landscape, anything but homogenous, thrills the scientists. Previous Vindaloosian craft have landed, successfully and otherwise, in the comparatively bland desert southwest of this particular continent.
Edifices abound, with the fleshy parasites shuffling into and out of them before returning inside the more advanced motorized life forms. One scientist suggests that there must be a symbiotic link between the parasites, which he calls “Fleshies,” and the other forms, which he calls “Rollers.”
His theory is soon confirmed when the kalfatz rover spies one of the fleshies stopping a roller near a squarish object, opening a tiny hatch on the roller’s flank, and then inserting a nozzle through the hatch.
It becomes clear: The fleshies feed the rollers in exchange for transportation.
“Gilnitz,” the scientist says. Closest English translation: “Remarkable.”
The rover turns its attention back to the intersection, where dozens of rollers sit in apparent anticipation of the transformation of lights.
Depending on the combination of lights, some go while others stop – and others go as fast as they can before the others start.
Two crash into each other. A different one vocalizes its acknowledgement of another’s existence through use of a series of repetitious musical notes.
A philosopher working with the Vindaloosian research team theorizes that this must be a religious ritual or mating dance of the rollers.
The mission is only minutes old, but already the Vindaloosians decide this will be much better than their exhaustive explorations of Sol IV, with its endless ruddy landscape and rock after rock after rock – some of which were large enough to cloak Vindaloo’s mechanical emissaries from the view of other alien landing craft.
Using the zoom feature on its imager, the rover sends back an image of a sign showing two fleshies in silhouette and the words PARADISE LAKES. Several rollers turn toward this destination, it appears. They disappear beyond a gate. All else is blocked by a tall outer barrier.
Intrigued, engineers send new orders to the kalfatz rover: Penetrate the barrier and get a look behind the walls.
The rover waits for a gap in the line of rollers at the intersection, then begins crossing. The light changes from green to yellow. A particularly vast roller, loaded not only with a fleshy driver but also millions of tiny stones, increases velocity and plows over the rover.
The last image the kalfatz sends home is of fat tire treads. The last data indicates catastrophic compression.
Disheartened and frustrated, the engineers, scientists and philosophers inform the Vindaloosian leaders of what appears to be violent aggression on the part of the dominant race on Sol III.
The Vindaloosian government declares agh’pon’ghat on Sol III, and unleashes the battleships to avenge the kalfatz rover’s destruction.
You must log in to post a comment.