As the week moved on, Carolyn continued to be treated like a cross between a circus freak and an extraterrestrial, and her spirits continued to spiral. When Billy left Friday morning, she gave a half hearted, “See ya later, alligator.”
He could tell her heart wasn’t in it. She tried to smile at him, but it came out in the form of a frown. Then more doctors arrived with fake smiles that she saw right through. Remarkable. Never seen anything like it.
Billy had received more response to his retrospective article on Beth than he ever would have thought. He had his doubts that anyone actually read the Shoreline Times. Most were complimentary reviews of the article via email—an address was included with his byline—and some longtime residents even related their memories of the original “Abandoned Girl” story through handwritten letters. But one email stood out from the others. It was from a Debi Edelstein, who alleged to have been in Grand Central on that Christmas Day and witnessed Beth’s parents conspire to put her on a train. Billy agreed to meet her at Grand Central—the scene of the crime.
Debi Edelstein had a thick head of brown hair that time had streaked with gray. She carried herself as a savvy New Yorker, and was blessed with the gift of gab, barely letting Billy get a word in. Based on her sophisticated look, she definitely didn’t come across as a kook, but Billy knew better than most that looks were often deceiving.
She informed him that she’d been waiting to meet her husband and son that day in the exact spot she and Billy now stood. They had planned to meet at Grand Central, where they would grab a subway to Penn Station to catch the Knicks game that night. Quoting the well-known Christmas carol, she said that on Christmas night all Christians sing, and then joked that all Jews go to basketball games.
As she waited for her family to arrive that evening, she took note of Beth’s parents. Their paranoid behavior stood out to her, from their nervous body language, to overhearing their too-loud talk of people being after them. She claimed to have sought out a security guard, but by the time she returned, the family was already gone, and she never pursued her suspicions with the police. When Billy asked her reaction when the same girl turned up “abandoned” in Connecticut, she said she never knew anything about it until she read Billy’s retrospective during a visit to her son and daughter-in-law’s home in Westport this past Sunday. The lifetime Mannhattanite suggested that it never made big headlines in New York, probably buried under stories of ten other abandoned kids.
Her sudden connection after viewing the photo of a child she only briefly crossed paths with over twenty years ago seemed a little convenient and a lot unlikely to Billy. But he did his due diligence, pushing her as to what she thought they were up to. Her theory was that they were selling the girl on the black market, and those after them were the authorities, perhaps the FBI.
As a fiction writer, Billy could respect a wild theory. And fresh off watching a little girl attempt to fly, and live, he was in no position to rule anything out. But he found it a little too grassy knoll, and got the feeling that Debi Edelstein might be a frustrated screenwriter with an overactive imagination. I’m just not gonna apologize for having a good imagination. But that’s when she mentioned the disfigured brother Beth talked of, remembering the mother calling the boy Nathan.
The obvious question was, how she could remember the name of a passerby in a train station who she supposedly hadn’t thought about in over twenty years. She answered that Nathan was the name of her own son, which had sparked a haunting vision of her son being disfigured. She claimed that she couldn’t get the thought out of her mind for days.
Billy wasn’t sure what to make of the answer, or how truthful her account of events was, but he couldn’t deny that Beth and Debi Edelstein remembering the same disfigured brother named Nathan couldn’t have been a coincidence. The only thing Billy was sure of was that there was a lot more to the story of the abandoned girl.
He took Debi Edelstein’s number and boarded a train back to Connecticut with more questions than he started with. As the train careened out of Grand Central tunnel into the bright sunlight of upper Manhattan, a man sat down beside Billy. He was probably in his late fifties or early sixties, and was dressed nattily in a shirt and tie.
“Billy Harper?” he asked.
Billy looked surprised. “How do you know who I am?”
“I’ve been following you.”
This got his attention.
“I work on my own these days. I make less money, but I take on clients I like, and do stress-free stuff like real estate closings and wills. I used to work for the sweatshop law firm Evans, Kramer & Gordon. Hundred hour weeks—worked on holidays—never saw my family. My best friend dropped dead of a heart attack one day at forty-two.” He shook his head sadly. “Forty-two. I still can’t believe it. Had two daughters, a wife…”
“I’m not following.”
“What I’m trying to tell you, Mr. Harper, is I worked in the city on Christmas Day, twenty-one years ago. I lived in Greenwich and took the train home that evening. There were very few people on the train. I happened to be sitting by a four-year-old girl named Elizabeth.”
“What are you telling me?”
“It’s not what I’m telling you—it’s what she told me. I asked her how old she was and she said four, but was five on the train. I grew concerned about her. My own daughter was about the same age, and I couldn’t imagine her riding the train by herself, so I asked her if she was meeting someone.”
“Who was she going to meet?”
“She said she was on her way to meet someone called Mrs. B.”
Billy reached for some extra air for his lungs. All of a sudden Debi Edelstein’s black market theory didn’t sound far off. In fact, it seemed the most likely scenario. Beth was headed for someone specific. She was sold. Sold to Mrs. B.
The man continued, “When I arrived in Greenwich, I realized who Mrs. B was. It was Tom Boulanger’s wife. She ran to the little girl and wrapped her arms around her. She called her Beth. She definitely knew who she was.”
“So what was your reaction when the stories about the abandoned girl came out in the following days?”
“I knew it was a fabrication created by the Boulanger family. The little girl wasn’t wandering around, and they certainly weren’t looking for the girl’s parents.”
Billy looked quizzically at him. There was more to this.
The man picked up on it. “Let’s just say you didn’t cross Tom Boulanger in those days. I just counted my blessings nobody noticed me. Like I said, dropping dead at forty-two wasn’t on my things to do list.”
“According to his daughter, Tom Boulanger had a stroke and is in a convalescence home, and his wife died years ago. It’s safe to go on record. This was all a very long time ago and everybody could use some closure.”
Despite his own words, Billy knew there was no such thing as closure when it came to the past. You just hope to numb the memories the best you can.
The train stopped and the man got up. “Go on record for what? Whatever conversation you think we just had, Mr. Harper, I can assure you we didn’t.” Then, like a ghost, he was gone.
Billy’s cell phone rang, startling him. What now?
It was Chuck. “Billy, a diagnosis is in.”
“What is it?” he asked with trepidation.
“I have no idea. Carolyn is having a temper tantrum. She won’t talk to the doctors without you here. Something about sticking together.”
Chapter 23
“We have diagnosed Carolyn with a rare genetic disorder called Congenital Insensitivity to Pain with Anhidrosis, or CIPA for short,” Dr. Carlson said.
The other Dr. Carlson in the room, her husband, picked up where his wife left off, “Carolyn is at the HSAN IV level, which is inherited as an autosomal recessive trait. The specific gene affected is NTRKI and the gene product is neurotrophic tyrosine kinase receptor type one.”
The female Dr. Carlson was an attractive Asian woman, her skin appearing to be
made from porcelain. Her husband was Caucasian and scruffy-looking. His cheeks were bloated and ruddy, and he had just a horseshoe ring of hair around the sides of his head. They were quite a contrast.
She read the baffled looks. “You will have to excuse my husband, he only speaks nerd. I will try to translate into English. Carolyn has a genetic disorder where she can’t feel pain or temperature sensation. And when my husband said CIPA is rare, he meant it’s so rare that there are less than a hundred cases known in the United States at this time.”
The looks turned to shock. She can’t feel pain? There is such a thing?
The female doctor continued, “We found no other abnormalities with her. For example, she can feel texture.” The doctor ran a scalpel along Carolyn’s exposed leg that descended from her hospital gown. Carolyn twitched, feeling its presence.
“She also tested positive for weight-carrying capability. So when she’s carrying her My Little Pony backpack around, she feels its weight. What she can’t feel is pain.”
Billy remembered when he pinched her leg on the bed and she flinched. She could feel, just not pain.
The doctor then flipped Carolyn onto her stomach and took out a long needle. She proceeded to insert it into Carolyn’s buttocks. It made everyone in the room squeamish, but Carolyn didn’t even flinch. Billy now understood why she was so fearless: there was no pain to fear.
Carolyn giggled and said, “She touched my hiney.”
Hindsight was always twenty/twenty. How many times would you hear someone say after a loved-one spiraled into tragedy, “The signs were there—I don’t know how we missed them.”
This case was no different. The first one was when Carolyn wasn’t even fazed by what should’ve been a debilitating abrasion on her cornea. Not to mention the giggles when the bookcase hit her, causing a deep gash. Everyone just said she was tough or took after her father, and even nicknamed her the Boo-Boo Machine. Billy wondered how many other incidents had occurred before he’d arrived.
While the signs were present, each individual incident could have been explained away in one way or another. But the leap off the porch was the smoking gun. But a disorder where a person couldn’t feel pain—who would-a thunk it? It was too bizarre to even imagine!
A sense of relief started to form a groundswell and the feeling of impending doom began to lift. Everybody was prepared for the worst, even if they didn’t know exactly what that was. This wasn’t the worst.
As everyone began to digest the surreal diagnosis, one question stood out. And Chuck asked it, “I have a bum knee and a weathervane for a shoulder. Just getting out of bed in the morning is a painful process. Isn’t it a good thing she can’t feel pain?”
The female doctor sadly shook her head. “As a mother myself, I have often prayed for any pain my child felt to be taken away. But pain has a purpose, Mr. Whitcomb. Carolyn’s tongue is the perfect example—she didn’t know she was causing serious damage.”
“I was just havin’ fun,” Carolyn reiterated, and for the first time it made sense.
“They are natural self-mutilators,” the female doctor continued, and the debilitating weight of guilt seemed to lift off of Beth’s shoulders. “Carolyn was actually very lucky she knocked her front teeth out. Teeth are the mortal enemies of those with CIPA.”
The male doctor interjected, “Hot temperatures are also a problem. The scars on her hand from touching the barbecue could’ve been a lot worse. CIPA patients have been known to unknowingly touch scorching temperatures until it melts away the skin and bone. But the biggest long-term problem is pressure on the joints. Since they don’t feel pain, they often don’t realize the damage they are doing. Sadly, many end up in wheelchairs at a young age.”
“It can also be very dangerous if a CIPA patient gets appendicitis or tonsillitis. Since they can’t detect it, it often goes untreated, and can be fatal,” the female stated.
Beth seemed in the early stages of being overwhelmed. Noticing this, the female doctor grabbed her hand. “I don’t mean to alarm you. With the right choices and education, Carolyn can live a normal life. And she can feel where it’s most important—in her heart. She will feel happiness and cry when she gets her feelings hurt. Feelings on the inside always override the outside touch.”
Beth released tears of relief. Chuck comforted her, while asking, “Is there a cure?”
The male doctor answered, “There is no cure at this time. So the key is education. For example, I have a bad back and needed to be educated to bend with my legs when I’m lifting heavy objects. With Carolyn, someone must test her food to make sure it’s not too hot, and she needs to learn to immediately stop when she recognizes blood, to name a few.”
Billy remembered the sizzling Cream of Wheat she gobbled down with her tongue still an open wound.
“And she must be educated about her joints. Choosing to take up the sport of hockey wouldn’t be sensible. While swimming, which puts little pressure on the joints, makes sense,” the male doctor added.
“Studies have also shown CIPA patients to be more susceptible to emotional trauma,” the female cut in. “When a child grows up with no fear, they often can become reckless in their attempts to achieve feeling. Drug abuse is prevalent. I would recommend getting Carolyn into some type of therapy at a young age.”
“But putting the child in a bubble isn’t the answer. Smart choices are,” the male said.
Billy flashed Beth an “I told you so” smirk. The tension broke and they fell into laughter. Soon the whole room was cracking up. Billy laughed so hard his stomach hurt. It was good to feel the pain.
Chapter 24
“Can I still play hockey?” Carolyn asked. Her face said she didn’t like where the conversation was headed.
“We’ll talk about it later, princess,” Chuck said.
“I’ll be really-really careful.”
She was always negotiating.
The female doctor then went into a cabinet above the examination table and pulled out a rudimentary thermometer. She shook it, and then instructed, “Say ah, Carolyn.”
Carolyn opened her mouth as wide as she could, exposing her still-unsightly tongue, and shouted, “Ahh!”
The female doctor placed it under her tongue and then examined the reading. “100.3,” she said.
Her husband nodded and said, “The fevers are very much connected to this. The without anhidrosis part means she doesn’t sweat properly. That is why during intense activity she begins to boil on the inside. Like a car without a temperature gauge. As long as this is monitored and she takes the medication we will prescribe, I believe the fevers can be controlled. Her symptoms are very mild in this case, and only were displayed when she was involved in extreme activity.”
His wife added, “She’s a lucky one. For many children with CIPA, the inability to sweat leads to mental retardation in the first few years of life, or they die from the overheating.”
“So how did she get this?” Chuck asked.
The male doctor’s chest puffed out of his white lab coat. Billy could tell he really enjoyed the science part, not so much the bedside manner.
“Humans have twenty-three pairs of chromosomes,” he began, “the exact position within a gene is called a locus. In the case of the HSAN IV, the genes are mutated in both parents and inherited by the child as an autosomal recessive trait.”
His wife rolled her eyes. “Once again, let me translate. Carolyn inherited this from both of you. Both parents have to be carriers, which is one of the reasons why it’s so rare. We estimate one in two hundred million acquire CIPA and there are less than a hundred cases in the United States. Based on the fact that two people with such a rare mutated gene found each other, I would say, in my best medical opinion, that you two truly must be soul mates. And I’d also suggest purchasing lottery tickets.”
The relief was oozing out of Beth. “So you’re saying that my drinking during pregnancy or any other self destructive behavior had nothing to do with this?”
“Absolutely not,” the female doctor scolded. “And you must stop blaming yourself. Sure, there are a unique set of challenges here, but I see parents every day who would give anything for such an intelligent, vivacious, and healthy little girl.”
She patted Carolyn on the head.
“I think this healthy little girl should get to play hockey!” Carolyn blurted in her do-ra-mi style.
The doctors began taking questions from the intrigued group like they were giving a press conference. Chuck grabbed Beth’s hand and asked if future children would acquire CIPA. The doctors gave it a one in four chance. But other children could be carriers without symptoms. When asked why Carolyn could feel textures, but not pain, the doctors compared it to someone losing their sight but not their hearing. CIPA affects only the nerve endings.
When the doctor press conference concluded, there was one more set of unfinished business.
The female doctor began, “This is a unique diagnosis for us. We are confident it’s the right one, but we want to send Carolyn to the Jordan Children’s Hospital in North Carolina to be examined by Dr. Samuel Jordan. Dr. Jordan is one of the leading pediatric neurologists in the world, and is unequivocally the world’s biggest expert in CIPA. We want him to confirm our diagnosis.”
“We took the liberty of setting up an appointment with Dr. Jordan for Monday. All expenses paid. You’d be flown on his private jet,” the male added.
Carolyn’s face exploded with excitement. “An airplane?”
Beth didn’t share her daughter’s enthusiasm. “I don’t want my daughter to become some guinea pig for science.”
The doctors assured that there would be no further commitment with Dr. Jordan beyond a second opinion on the diagnosis. They also believed his CIPA experience could be helpful in setting up a training program to educate them on CIPA, and make Carolyn’s long road less perilous. It was an offer they couldn’t refuse.
Painless Page 10
