Tampa Bay Times: A day at the movies, inspired by real-life and a good friend

By Justine Griffin

*The Christmas Day 1A centerpiece story*

Collin Barnes, Reid Carlisle, Aidan Griffin, Cedric Buckley, Matthew Morgan, and Tyler Burkhart came to see the movie "Wonder" with Connor Carlisle. [Photo courtesy of Kerry Carlisle]

Connor Carlisle wanted to design an invitation, something special, and he asked Sarah Reed for help.

Reed is one of Connor’s teachers at St. Petersburg High School, and her hospitality and tourism class is his favorite. He dreams of designing roller coasters.

So they worked on a flier, and he passed them out to everyone he knew at school. He wanted them to go to a movie with him, to see Wonder.

The blockbuster film, released widely Thanksgiving weekend and starring Julia Roberts and Owen Wilson, is based on Connor’s favorite book. The young adult novel by Raquel Jaramillo — written under the pen name of R.J. Palacio — chronicles the story of a fifth-grade boy living with a condition similar to Treacher Collins syndrome, which required many surgeries. Because of his disfigurement, the main character, August, is bullied in school. The story shares what it’s like to be different, and how he’s often stared at for something he cannot control.

Connor, who is 16, says he has read the book many times. Like August, he has had many surgeries. Thirty-six, in fact.

Connor was born with a cloverleaf skull, which made his eyes bulge and his ears reach near the back of his head. His skull was more cone-shaped than round. Ultimately, it didn’t leave much room for his brain to grow.

“I had a very normal pregnancy. We had no idea until he was born,” said Connor’s mother, Kerry Carlisle, who is a nurse in the Pinellas County school system. “Back in 2001, the outlook was not very good.”

Connor also was diagnosed with the genetic disorder Crouzon syndrome and Arnold-Chiari malformation, which means he was born without a fully developed spinal cord, nor its protective covering. He lives with a tracheostomy tube in his throat, which makes his voice raspy and low. He sleeps on a ventilator, and his parents take turns being “on call” in case he needs help in the middle of the night. His long-term prognosis isn’t so clear.

His family lived in New York City for nearly 12 weeks straight when he was a few years old, as he underwent several craniofacial surgeries to reshape the bones in his skull. Family photos show a happy, young Connor on the carousel in Central Park, even as equipment halos his face.

“We always made the most out of it, vacation-wise,” said Connor’s father, Reid Carlisle.

Connor’s favorite memory was visiting the Toys “R” Us in Times Square. And he enjoyed playing with his big brother, Reid Jr., who has been Connor’s best friend and advocate all his life, while they watched subway cars zip in and out of Grand Central Station.

“I remember really liking the trains,” Connor said.

Connor’s health continues to be struggle. He fights pneumonia, tracheitis or respiratory infections nearly every year, which almost always land him in the intensive care unit. He was hospitalized twice in August. He hates that he can’t swim underwater because of the tube in his throat.

But he tries to do all he can.

Connor is a huge Star Wars fan. He went to Megacon for the first time this year. He’s been in Boy Scouts most of his life, and loves to camp with his dad and brother. His parents bring the ventilator, with extension cords, on camping trips. Last summer, he attended Camp Able in Marco Island all by himself. No aides. No parents. Just him.

He loves riding the Cheetah Hunt at Busch Gardens, but the Incredible Hulk coaster at Universal’s Islands of Adventure has been his favorite since he was cleared by his doctors to ride coasters in 2015.

“Connor is definitely not the type who likes to sit around,” said Tyler Burkhart, an 18-year-old Northeast High student who has known Connor pretty much all his life. “He’s always looking for something new to do.”

Read more here. 

Tampa Bay Times: Exploring the incredible color, cuisine, culture of India

By Justine Griffin for Latitudes, the travel section of the Tampa Bay Times

Tampa Bay Times reporter, Justine Griffin, and her husband, Alex Mahadevan visited the Taj Mahal in Agra, India, on their honeymoon in May 2017. The ivory marble mausoleum on the south bank of the Yamuna river was named a New7Wonders of the World (2000-2007 edition). [Photos by Alex Mahadevan]

DELHI

As I slid my shoes off and handed the man a five-rupee note before entering the Jama Masjid mosque, I could feel the heat from the red stone against my heels. I could also feel the intense stares of the Delhi locals. I don’t know which made me sweat more.

As a tall, blond-haired white woman dressed in Western clothes, I couldn’t have stood out more at this ornate and historic place of worship for Muslims in the heart of Old Delhi. My husband and I were still jet lagged from our 4 a.m. arrival in New Delhi, India’s capital, a city with a population of more than 11 million. But we were too excited about our honeymoon adventure to waste any time.

My husband, Alex, is half Indian. His father is from Chennai, a coastal city in south India. While Alex had visited India many times while growing up, he was still itching to see more as an adult. So we booked a 15-day trip.

Alex’s mother, also a blond-haired white woman, warned me about the stares. I remember shrugging it off. India was bound to be a trip of a lifetime. But now that I was here, I couldn’t shake this creeping, uncomfortable feeling as eyes followed me.

Thin women dressed in colorful sarees, some with babies tucked under their arms, washed their hands, feet and faces at a central pool out in front of the mosque. Their eyes seared into mine when we passed by.

A young boy followed me through the mosque. His friends would jab him in the ribs and laugh every time our eyes locked. Just before we made it to the exit, he tapped me on the shoulder and pointed to his smartphone. He wanted to take a selfie with me.

There was never a point in our remarkable trip to India that I felt unsafe. Nearly everyone we met, be it in a shop, at a restaurant or on a dirt street in a rural village, was kind and friendly. People were drawn to Alex — one man wanted to shake his hand and thank him for returning to India to explore his heritage.

I got used to the stares.

Read more here.

Tampa Bay Times: Between surgeries at Tampa General, a place to recharge

By Justine Griffin

The Starbucks inside Tampa General Hospital is open every day. [Photo by ALESSANDRA DA PRA | Times]

DAVIS ISLAND — The wheeze of an espresso machine dulls the Christmas music playing on the overhead speakers, but the customers waiting in line aren’t listening anyway.

A nurse in a surgical cap with green and red snowflakes is on her phone, shouldering through the line with two coffee cups in her hands. “I talked to Dad, he’s bringing the turkey,” she says.

Another nurse, dressed in plain, blue scrubs, is balancing a tray of four steaming coffees and talking to a co-worker in Mandarin. Three young doctors join the end of the line, still wearing blue booties over their Nikes and face masks tugged down around their necks. “He’s bleeding from the ear, and they don’t know if they should send him to the E.R. or to the clinic,” one explains to the others.

The mid-morning rush at the Starbucks inside Tampa General Hospital is dying down just after 10:30 a.m. on the Thursday before Christmas. The scheduled morning surgeries are well under way by now.

Starbucks isn’t the only place that serves coffee on the sprawling campus, but it is a popular attraction, tucked into the maze of the first floor of the main hospital.

The coffee shop looks and smells like any other in the chain. The signature green emblem hangs in the window.

But hospital staff and visitors stream in and out from 6 a.m. to midnight. Surgical technicians eat from lunch boxes at the wooden tabletops. Families gather on the plush, leather chairs in the corner and look over patient paperwork. On Facebook, customers express thanks for “good coffee” while they wait for news or fuel long shifts.

It’s business as usual even just before Christmas.

The Christmas Song (Chestnuts Roasting on an Open Fire) is interrupted briefly by a call over the speakers: “Code purple, NICU.” A few people in line check their phones, then put them away.

The scrubs come in a rainbow of colors: Turquoise. Maroon. Navy blue. Dark green. Light green. Some surgical caps have Gators or Seminoles on them. Some have candy canes.

Some visitors wear blinking Christmas lights and festive sweaters. Others look tired. They wear sweatpants, flip flops and their hair in messy buns.

A thin, balding man wearing scrubs that are so loose he’s bunched and rolled the waistband several times around his hips, gives another doctor in a white coat a warm hug as they wait in line. They discuss a patient who had a heart attack. “Tiny, tiny arteries and tiny, tiny crystals,” he describes with a thick accent. “Nothing major. She will be okay.”

They both smile.

The hospital can’t shut down for the holidays. The baristas won’t, either.

They’re open every day. Even on Christmas.

Tampa Bay Times: As politicians pledge solutions to the opioid epidemic, advocates say the key will be money

By Justine Griffin

With deaths from opioid abuse rising dramatically, state and national leaders have stepped up recently to acknowledge the crisis. But those on the front lines of the epidemic say the best thing they can do is provide money for much-needed treatment. [Times files]

The opioid epidemic has grabbed the spotlight of late, with state and national leaders promising action.

Gov. Rick Scott pledged in September to push for tighter prescription rules and budget $50 million for treatment and beefed up law enforcement. A month later, President Trump declared the epidemic a public health emergency and outlined some possible ways to fight addiction and make certain drugs less available.

But local advocates, medical professionals and researchers who work every day with those affected by opioid addiction are hesitant to celebrate until they see meaningful action.

“We certainly want to commend the governor that he’s recognizing that he needs to make a larger commitment to combat this epidemic,” said Anne Swerlick with the Florida Policy Institute in Tallahassee. “But both on the fiscal and policy side, the state has not opted to expand Medicaid, which would be leveraging millions of dollars to provide substance abuse programs for people in need.”

She worries that much of the $50 million Scott talked about would go to law enforcement, “which isn’t the same as providing people coverage for programs that have been proven to help.”

Scott’s office says the money would go toward statewide drug treatment, counseling and the Florida Violent Crime and Drug Control Council, a program launched in 1993 to help local law enforcement agencies with violent crime or drug investigations.

The governor also plans to propose legislation that would limit opioid prescriptions to a three-day supply, or seven days under strict conditions; require those who prescribe or dispense medication to use a statewide database that monitors prescriptions; combat unlicensed pain management clinics; require health professionals to get and stay educated about opioids; and open the door for federal grants to help with the problem.

But Scott’s record has some people questioning his commitment. In 2011, he eliminated the Office of Drug Control and chose not to expand Medicaid. And state funding has fluctuated drastically over the years for organizations like Operation PAR in Tampa Bay, which provides drug treatment and mental health services for those dealing with addiction, said Marvin Coleman, the group’s vice president of community relations.

“We need more help along the lines of funding,” Coleman said. “In order to treat a client, we need the infrastructure in place to help them: the facility, the doctors, the nurses. It takes dollars. The public awareness of the issue is great. This crisis hits all corners, and so many people have been touched by this epidemic. But the only way to fight it is to fund treatment.”

Despite his doubts, Coleman said he’s hopeful. He said lawmakers are asking the right questions this year, and looking for the best ways to help and allocate money to programs with good track records.

“A lot of centers like us sustained budget cuts last year. Substance abuse centers are never at the top of the list,” Coleman said. “But they ended the last legislative session talking about the issue, and we hope they begin the next one by keeping this topic on the table.”

The 2018 session begins in January.

Read more here.

Tampa Bay Times: When the goal is getting to the ER fast and cheap, some choose Uber over 911

Most hospitals in the Tampa Bay area don't track how often ride-sharing drivers drop off or pick up patients. But at Tampa General Hospital, pictured here, they are "here quite a bit over the course of a day," said spokesman John Dunn. [LOREN ELLIOTT | Times]

By Justine Griffin

Matt Lavin had just arrived in Charlottesville, Va., for a business trip when he started feeling sick.

By the time he got to his hotel around 11 p.m., he felt excruciating pain.

“I didn’t know what was happening, but I knew something wasn’t right,” said Lavin, an attorney who lived in Washington D.C. at the time but is also the medical director for a Florida-based chain of addiction recovery centers. He had good insurance through his employer, but still second-guessed calling an ambulance for help.

“My deductible was like $5,000 or something like that. And it was the beginning of the year. I didn’t know how much the ambulance was going to cost me, and I’m away from home in this hotel,” Lavin said.

So he requested a ride on Uber.

The driver arrived in just three minutes, helped him into the car and sped to the hospital, with Lavin keeled over from intense pain his abdomen.

Later Lavin, 48, would find out his appendix burst. He ended up having emergency surgery that night. But Lavin says he saved himself thousands of dollars by choosing Uber, the ride-sharing company that connects passengers with taxi-like independent drivers through a smartphone app, instead of calling 911.

“I knew they would be fast,” Lavin said of Uber. “But I think (the driver) was pretty freaked out. I was in a lot of pain and I had to lie down. He was new to Charlottesville and didn’t know where the hospital was. If I’d taken an ambulance, I would have gotten a bed right away. Instead I had to walk in and wait like anyone else. But I think I paid $20, which is much better than the $5,000 I paid the one time I was in a car accident.”

Lavin is not alone. Ride-sharing drivers in Tampa Bay and beyond are noticing an uptick in rides to and from the emergency room as consumers try to avoid spending what could be thousands of dollars for an ambulance.

Read more here.