by Pam Belluck
McLaughlin brought Curry to meet Lepore, “so if Justin went down,” Lepore “would know what his face looked like.” He sat in the waiting room during her appointment, unnerved at first by the large furry chair, the Picasso-esque hybrid of animal parts: black hooves, red tongue, goat-like horns. “What the fuck is this?” he asked. “Alexandra, do you see what I see? Am I having a hypnagogic hallucination?” Nar-coleptics can have those before falling asleep.
“I swear to God, it’s a real thing,” McLaughlin told him. Curry couldn’t avoid the psychedelic chair: “Even if I was looking in the glass cases with the bones and things in them, you can still see it in the reflection.” And Lepore’s office was full of Curry’s triggers. “That door slams like the dickens every few seconds. Justin was bored, the room was cold—he didn’t stand a chance.”
Suddenly, Curry fell, “face down, straight as an arrow. You had the nurses freaking out, trying to figure out what is wrong.” Other patients in the waiting room were perturbed. “I was just terrified,” one told McLaughlin. “I really thought he was dead.”
Before scooping Curry off the floor, Lepore, sensing a teachable moment, summoned the hospital’s head of emergency nursing, telling her enthusiastically, “This is what it looks like!”
To try to acclimate Nantucket’s emergency responders to their condition, Curry and McLaughlin printed a flyer with their smiling pictures and an explanation of their disorders. Rather than take her to the hospital, McLaughlin wanted emergency personnel to know, “it’s much easier to drive me home and put me in bed.”
They struck a deal: “If I cataplexy in front of a huge crowd, the EMTs have to bring me in to the ER because otherwise they look like incompetent jerks, and they can’t just stay there until I wake up.” But if she collapsed off the beaten path, they could leave her or drive her home. In return, when she and Curry wanted to attend an event, they would check with EMTs first.
Fourth of July fireworks were a challenge they wanted to tackle, even though the loud, startling booms would cause them to collapse, probably repeatedly. When McLaughlin asked Lepore about watching the display in their car with the windows rolled up, Lepore said, “Oh no. If somebody sees two unconscious people in a car with the windows rolled up, they’re going to think it’s a suicide pact.” People invited them to fireworks-watching parties, then disinvited them when they realized they might make a scene. “How do you find a spot where two people can be unconscious-looking on Nantucket and nobody’s going to notice it?” McLaughlin puzzled. Finally, they snuck into a yacht club, plunked down on the beach, and told EMTs where they were.
Another time, they wanted to attend the annual demolition derby, although “watching cars crash together is going to stress me out,” McLaughlin knew. To be safe, she and Curry sat near the EMTs, where “I cataplexied nine times in front of everyone. I was part of the show.”
Despite these accommodations, McLaughlin continued to have episodes that unnerved her. After her collapse while walking her dog, she called Lepore distraught, desperate to try Xyrem: “I know that this diagnosis is me. This is fitting the things that are just so private I never told anybody. Please, Dr. Lepore, let’s try this new medicine. I’ll pay for it out of pocket—I don’t care.”
While Lepore began researching Xyrem, McLaughlin had another episode on her doorstep and was taken to the ER. Lepore swung by and said: “Absolutely, I’ll write the prescription.”
McLaughlin felt a swell of gratitude. “He didn’t care about the perfect diagnostic criteria. It looks like this. It fits me perfectly. Wait-and-see is what’s been the nightmare of my life. He’s just saved my life for me.”
In August 2011, she began taking Xyrem, a foul-tasting liquid she mixes with water. McLaughlin expected to pay for the Xyrem herself, but somehow Lepore’s office persuaded her insurance carrier to cover it.
So far, McLaughlin is napping less and “having fewer cataplexies.” During a two-hour visit with McLaughlin in January 2012, for example, she knocked out only once, after being startled by the ring of her mother calling her on her cell phone. But only a few minutes after her head dropped to the table, she awoke. (Curry, who was with her, cataplexied briefly soon afterward, during a discussion of a fatal accident that he found too distressing.)
McLaughlin finds she can drive if she hasn’t eaten recently, if there’s no chance of thunder, if she isn’t tired, and if she sings along with the radio. She is aware that for brief moments after taking Xyrem, her brain thinks “whatever I’m doing is fascinating,” prompting her to order ridiculous merchandise like a dog wig from late-night TV. And she has taken precautions, telling the fire department, for example, that in the event of a nighttime fire, she won’t be rousable. She is getting a service dog that will be trained to catch her when she falls.
She even got a job: office manager for a theater company. “Who would want to hire this?” she’d thought. And it was a close call. During her interview, the interviewer, upset about the recent drowning death of a child at a Nantucket summer camp beach program, cried and hugged McLaughlin. McLaughlin couldn’t allow herself to feel sadness; already her arms felt paralyzed. “I knew I had twenty seconds before I was going to collapse. I was trying to think of something humorous.”
But when McLaughlin explained why she could not return the hug, the woman was very understanding. The job was short-lived, as it turned out. Still, McLaughlin considered it progress. Lepore is trying to find her another job or some volunteer work, and has jotted a note on his prescription pad, saying that she has narcolepsy and that concerned parties should call him. She carries it in her pocket, but it doesn’t work all the time.
People still misunderstand and overreact, or they think her symptoms are figments of her imagination. But the message Lepore hopes to convey is clear, McLaughlin says: “It’s Nantucket—we can handle weird.”
CHAPTER 9
FAMILY PRACTICE
Lepore and his neighbor, Chris Fraker, were outside in the small compound that contains their houses when they noticed something glinting in a patch of woods. Moving closer, they saw a bottle of yellowish liquid: Captain Morgan rum.
They realized the bottle must belong to Lepore’s son Nick and Fraker’s son Porter, who were both sixteen and fast friends. Other parents might confront the kids with the seriousness of their behavior or let it slide, thinking that confrontation would make things worse. Most would confiscate the bottle, to at least temporarily deprive the boys of booze and let them know they’d been caught.
Not Lepore. He poured out some rum, unzipped his fly, and without ceremony pissed into the bottle, refilling it with his urine. Then he put it back in the bushes.
Soon after, Nick, Porter, and another friend grabbed for the bottle and drank. Lepore waited a few months before telling them what they had swallowed, impishly asking them “if it tasted a little salty.”
Nick, who swears he was drinking only beers that night, was mortified. “My friends said that didn’t happen, and then they never talked about it again.”
But Lepore savored his victory. How many parents, especially how many parents who are doctors, would divest of their own bodily fluids in the distinct hope that their children would drink the waste, be disgusted, and sober up?
“He’s insane” is Nick’s verdict. “If he was living on the street, they’d call him crazy. But because he has a house and family, he’s eccentric.”
Growing up as one of Lepore’s children was always an adventure. He could be unpredictable, given to unusual hobbies, competitive flights of fancy, and off-the-cuff comments steeped in shock value. But he was also a strong, dependable presence, someone they could see was vital to their island. It’s probably no accident that all three Lepore children’s jobs relate to health care, but also no accident that they are not trying to do the work their father does.
“My father’s a big personality—he casts a very large kind of shadow,” says T.J., the middle child. “He and Nantucket have been a little like Kurtz
up the river,” he adds, referring to Joseph Conrad’s Heart of Darkness.
Meredith, the oldest, often called Meri, did not realize until she attended nursing school how “different he was from your typical physician. He goes above and beyond. And he gave up a lot to move to Nantucket. I was like, ‘Why did you move here? You could have been a big-time surgeon. You picked up and moved to this teeny little island?’”
The Lepores had been on Nantucket only a few years when they came face to face with the island’s medical limitations. It was shortly before Christmas, and Lepore was working the emergency room. Suddenly, Cathy called to say that something was wrong with T.J., who was seven. He had been sitting on a couch complaining of a headache, and when he stood up, he went limp on his left side. “I crashed to the floor,” T.J. recalls.
Lepore bolted home, but when he arrived, “I had everything back,” T.J. remembers. “He didn’t know what to think. He walked me around in circles, and he left. And I went limp and crashed to the floor again.”
Lepore rushed back, scooped up his son, and headed to the hospital. T.J. had had a stroke, and his left side was paralyzed.
Lepore felt T.J. should get to a bigger hospital where state-of-the-art diagnostics could determine exactly what damage occurred. But the weather was dicey, and boats had not been running regularly for days. “The hell with it,” Lepore decided. “We’re going to Boston.”
After three hours of wrangling, Lepore got T.J. on a small plane, so tiny he had to fly with only a nurse. He remembers being wrapped “like a potato in this tinfoil warming blanket.” A brain scan showed an infarction, an area of dead tissue, in his right parietal lobe, which helps coordinate spatial and mapping abilities.
Even for Lepore, the experience at Children’s Hospital Boston was frightening. “No terror like a sick kid,” as he puts it. “Your kid is totally paralyzed on his left side, yet he’s the best kid on the floor, because all these other kids got tumors.”
Despite an intensive diagnostic workup, the stroke’s cause remained a mystery. Lepore, the master diagnostician, couldn’t solve the riddle of his own child’s condition. His impulse to fix things took hold: he planned a ramp to their house and obsessed about helping T.J. learn to walk again.
Late Christmas Day, the hospital discharged T.J., and for months he underwent physical therapy. That summer, Lepore devised an additional workout regimen, taking T.J. to Mount Katahdin, Maine’s highest peak, where Lepore and his limping son hiked the Knife Edge trail, a narrow ridge with a dauntingly shear drop-off. “I was terrified,” T.J. recalls. “It was not the best parenting decision. But he got me out there.”
T.J. now exhibits only “a small amount of motor dysfunction,” is “very right handed,” and has “a little bit of atrophy on his left leg,” Lepore says. “If he gets tired, he sort of contorts his left hand.” When T.J. wanted to be a doctor, some medical schools were concerned. “People wanted to know whether or not he was going to have a repeat of it.”
But he has become an obstetrician-gynecologist in Springfield, Massachusetts, able to perform surgery, even though “I hold my forceps a little funny” and “my grip for my left hand is just a little bit impaired.” He sees these simply as “areas where I’m a little weak and I have to compensate.”
Lepore tried to model the need to compensate for deficiencies and take initiative to fix problems. No one else would do it for you—or should—was his belief.
When T.J. struck Nick with a hockey stick above his eyelid, causing a deep gash, it was Lepore who stitched his face. Doctors are generally advised against treating family members, but Lepore never considered asking anyone else. “That’s easy, of course,” he says. “No surgeon thinks he is second best.”
Sometimes, though, his pragmatism verged on boot-camp toughness.
One late fall day when Cathy was off-island shopping, her friend Pam Michelsen got a call from Meredith, who was about nine. “Her daddy had locked them out of the house because he was reading, and they were fighting. He was mad at them, and he just threw them out. And it was bitter, bitter cold.”
Michelsen called Lepore. “Tim, you can’t lock the kids out of the house. It’s freezing.”
Lepore, from an upstairs window, tossed coats outside. Soon Meredith called again. “We’re still freezing to death!” Michelsen jumped in her car. It took a while to reach the Lepores’ because she lived far north-west of downtown, “which is the other side of the world because, you know, ten feet is ten miles” on Nantucket. She grabbed the children, who were huddled on the porch, and took them until Cathy got home.
It wasn’t the first Lepore lockout. When the children argued, he’d send them outside, then race downstairs to lock the bulkhead from the inside and block other means of reentry. “I don’t think any other parents have been locking their kids out,” he acknowledges, and “I don’t think Cathy endorsed it. But I’m trying to keep things comfortable, and the kids are fighting and raising hell.”
It wasn’t just self-interest, he asserts. “It was a way to catch their attention. They stopped fighting, and they had to work together. It united them against a common enemy: me.” Besides, contends Lepore, it was more humane than a spanking. “No blood, no foul.”
It worked, at least temporarily. “They were a good deal more contrite. You just keep them a little bit uneasy, and they have to deal with an irrational parent.” They never knew what to expect. Once, after he had locked them out, “I caught Meredith sneaking in the house. I had fallen asleep on the couch downstairs, and she came in through the window. She wasn’t quite prepared to see dear old Dad sitting there.”
The Ajax episode demonstrated another side of dear old Dad. Nick was about twelve, and Lepore took him hunting for rabbits for Ajax, his red-tailed hawk. As Lepore recalls, “Nick wasn’t working particularly hard. He was lollygagging instead of beating the brush trying to get rabbits moving.”
Suddenly, Nick recalls, he heard a “Whoof!” and whipped around. “There was Ajax, with its wings fully spread out and its talons and feet pointed. I ducked as quickly as I could, and it went whap on the top of my head.” Grappling for a secure hold, the bird “started refooting and plucking out tufts of hair.”
“The bird is on my head!” Nick screamed, immobilized with terror. “My dad said, ‘I’ll be right there.’ So nonchalant.” A friend of Lepore’s displayed more urgency, “charging through the brush” and ordering Nick not to move. “He reached down, gets the bird off my head. It felt like a half hour, but I’m sure it was about five seconds.”
The hawk punctured holes in Nick’s scalp. Blood cascaded down. But Lepore did not react the way Nick expected. “Nick, go sit in the car—there’s about twenty minutes of light left,” he said. “I just want to hunt a little bit longer.”
Nick gaped at his father, thinking, “Are you serious? I have blood streaming down my head!” Hiking through the brush to the road, he approached the only house. An old couple answered. “My dad’s bird attacked me,” Nick panted. They were patients of Lepore’s, naturally. They brought Nick inside, where he got cleaned up and drank orange juice. As Nick left the house, his father, having finished hunting, approached, notably unruffled.
“He looked like a waif in this bloody T-shirt, like something out of a horror movie,” Lepore recalls. “They were just little puncture wounds, but on the scalp they really bleed.”
Nick realized later that his father “knew it was nothing serious. He just didn’t take into account how I didn’t know that. I was never angry at him about it, to be honest. I was fine, and he was right. He has made a lot of sacrifices as far as his time, and this day was his chance to do something fun. I should have blamed him somewhat, but I just blamed the bird. I told him to never let me watch that bird if he’s out of town because when he comes back, it’s going to be stuffed.”
The incident “made its way around the island pretty quick,” Nick recalls. After all, “I had a tuft of hair missing.” He’d expected people would be shocked.
But Nantucketers knew their doctor. “Of course,” people said. “Of course, he told him to just go wait in the car.”
Lepore’s children were immersed in the medical ins and outs of a small, self-contained community, not only because of his job, but because Cathy was a school nurse before becoming a school counselor.
“In a lot of ways I grew up at the hospital,” notes T.J., who, with his siblings, would hang out at the nurse’s station while Lepore did rounds. Once, Lepore dissected a heart in Meredith’s third-grade class. She recalls that “about three-quarters of my class left the room and wanted to throw up.”
At home, “the phone rang a thousand times a day,” T.J. remembers, and patients constantly dropped by. One Sunday morning, T.J. opened the door to see Steve Tornovish, then an acquaintance of Lepore’s (later, he would marry Cathy’s sister Beth). Blood covered Tornovish’s face; he was injured playing flag football. “Dad, it’s for you,” T.J. called. Tornovish never considered going to the hospital. “That kind of shit happens at the Lepores all the time.”
Many people assumed the children knew their personal business, making it a mixed blessing to be Dr. Lepore’s kids. “It seemed like you always had to be very careful what you did in public,” Nick remembers. Other times, “people would just come up and say, ‘Oh, I want to thank your dad for so and so,’ and I had no idea who they were.”
Still, Lepore “always tried to shield us” from the pressures he felt, T.J. recalls. “Things were playing on his mind, but he lacks a certain ability to share, which is normal in his age group. He also bottles a lot up. I can remember as a kid he would get grumpy with us. That’s usually a good sign that something bad was going down or something that he hadn’t expected.”