A painless girl was in the kitchen stirring noodles. At that moment, the spoon slipped out of her hands and fell into a pot of boiling water. The girl then went to school on the second shift, the TV was working in the living room, and her mother was folding bedding on the couch.
Without hesitation, Ashlyn Blocker lowered her right hand into the water in order to get the spoon, pulled it out of the water and began to look at it by the light of the stove. Then she went to the sink and directed a stream of cold water on all the slightly faded white scars, and then shouted to her mother: "I just put my fingers in there!"
Her mother, Tara Blocker, left her underwear and rushed to her daughter. “My God!” - she exclaimed - after 13 years the same fear - after which she took a few pieces of ice and gently put them on her daughter's hand, a little soothed that the wounds were not so terrible.
“I showed her how you can get a spoon out of the pot using other items in the kitchen,” Tara said as she told me the story with a tired smile on her face two months later. “But there is another problem,” Tara admitted. "She started using hair tongs, and they get very hot."
Tara was sitting on the couch wearing a T-shirt that said Camp Painless But Hopeful. Ashlyn sat on the carpet in the living room, knitting a handbag from the skeins of yarn that had accumulated in her room. Her 10-year-old sister, Tristen, slept in a leather chair in the arms of her father, John Blocker, who sat in it after work and gradually fell asleep too. The house smelled of homemade pasta and cheese prepared for dinner. Heavy rainstorms in South Georgia drummed the drainpipes, and lightning from time to time illuminated the baseball field and the courtyard pool.
Without taking her eyes off her crochet hooks, Ashlyn jumped into the conversation and added one detail to her mom's story. "I just thought then, what have I done?"
I spent over six days with the Blocker family, and I saw Ashlyn act like a normal 13-year-old girl combing her hair, dancing and jumping on her bed. I also watched her running around the house like crazy, not thinking about her body, and her parents asked her to stop. She also fought in air hockey with her sister, while pounding the puck on the table with all her might, trying to do it as quickly as possible. When she made sandwiches in a frying pan, she touched the bread with her hands, as her mother taught: she had to make sure that the bread was already cool enough to eat. She may feel warm and cold, but this is not the case for the more extreme temperatures in which normal people feel pain and immediately withdraw their hands.
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Tara and John didn't feel completely at ease when they left Ashlyn alone in the kitchen, but it had to be done - it was a concession to her growing independence. They made it a rule for themselves to tell stories about what a responsible girl she was, but each was followed by an accompanying narrative that was not easy to listen to. Ashley burned her palms once when she was two years old. John used a high pressure washer in the driveway and left the engine running; and the moment they lost sight of Ashlyn, she walked over to the apparatus and thrust her hands into the silencer. When they picked them up, the skin was burned.
There was also a story about fire ants who pounced on her in the backyard and managed to bite her more than a hundred times, while she looked at them and shouted: “Ants! Ants! Once she broke her ankle, but after that she ran for two more days, until her parents realized that something was wrong. They told all of these stories as calmly as if they were about Tristen playing softball or their son Dereck's golfing technique, but it was obvious that after all these long years they continued to think about how to protect your daughter's life.
A couple of days after the story of dipping her hand into boiling water, Eshlin was sitting in the kitchen and playing with a bandage on her head, with the help of which she threw back her long dark blond hair. We were all busy painting napkins, playing checkers and listening to Ashlyn and Tristen singing the song “Call me maybe,” when suddenly Tara screamed and pulled her daughter's hair up. Ashlyn was bleeding. Her bandage stuck into her skin the entire time we sat there.
Ashlyn wears a headband and flip-flops most of the time, as well as her doctor-prescribed dark-rimmed glasses and bead bracelets that she keeps in an old Vlasic cucumber jar. She sells her knitted five-dollar handbags to friends at Pierce County Middle School. When she laughs or smiles, you can see the transparent Invisalign mouthguard, as the metal braces can cut her tongue or gums without her noticing. She also has a medical identification tag that she attaches to a silicone bracelet that matches the color of her clothes. On its reverse side there is an inscription: "Does not feel pain - sweating is minimal."
She was once asked at school if she was superman. Will she feel pain if someone hits her in the face? Can she walk on hot coals like on ordinary grass? Would it hurt her if she was stabbed in the arm? The answers are: no, no, yes, no. She is able to feel pressure and texture. She feels a hug and a handshake. She felt everything when her friend Katie painted her toenails. “People don't understand me! she exclaimed one day when we were playing checkers on her iPad. - All the guys in the class ask me about this, and I say: "I feel pressure, but I do not feel pain." Pain! I can't feel her! I constantly have to explain it to them."
When Ashlyn was born, she didn't scream. She made a barely audible sound, and her eyes on her red face closely watched what was happening. After birth, she developed such terrible irritation that Tara even frowned when bathing her, and then the pediatricians advised her to change the recipe, apply ointment to the inflamed areas and keep them dry. “But I kept thinking that she wasn’t crying,” Tara said. "The doctors dismissed these doubts, but we kept asking the question: What is happening?"
When Ashlyn was three months old, the Blockers moved from Northern Virginia to Patterson, Georgia, where Tara's family lived. When Ashlyn was six months old, her left eye was swollen and severely red. Doctors suspected acute conjunctivitis, but Ashlyn did not respond to the medication, and the Blockers then consulted an ophthalmologist, who discovered extensive corneal damage. The ophthalmologist suggested that the girl had no corneal sensitivity and referred them to the Nemrous Children's Clinic in Jacksonville, Florida. It took a while to arrange an appointment, but even before they left for Jacksonville, Ashlyn had scratched her nose and almost chewed off part of her tongue with her teeth erupting.
At the clinic, doctors took a blood sample from Ashlyn and scanned her brain and spine, but these tests did not give any definite results. More research was done over the next 18 months. A nerve biopsy from the back of her leg left scars that spread as she ran. When the doctor finally gave her the diagnosis, Tara was afraid that she would forget all these words and therefore asked them to write them down. The doctor took out a business card and wrote on the back: "Congenital insensitivity to pain."
The doctor told us that we are the only ones here,”Tara said. - And that this is a very rare case. He told us to keep a close eye on her and that the doctors did not know much about the disorder and therefore could not do anything special. It sounded like he said, "Well, good luck!"
At home, Tara entered the words "congenital insensitivity to pain" into a search engine and began browsing the materials. There were not so many of them, and they mainly dealt with injuries and early death. There were no comforting recommendations there.
“Neither John nor I have ever heard of such a thing,” she said. - That was incredible. And it was scary. " They received help from people in Patterson, a community with fewer than 700 residents. When Ashlyn started attending school, teachers watched her in the schoolyard; one person was specifically assigned to make sure that everything was ok with her all the time. The nurse washed her eyes and checked her shoes every time she came to school after vacation. She called it the "Nascar Pit Stop" and made sure that there was no sand in her eyes that could damage the cornea. She also checked the scars on her legs. “It sharpened our ability to observe,” Tara said. "I've learned to see some things before they happen."
The blockers got rid of furniture with sharp corners. They laid very soft carpets on the floor. They didn't allow Ashlyn to roller skate. They wrapped her hands in several layers of gauze so that she could not comb them. They used a special baby monitor in her room to hear the sound made by their teeth when they chewed. But, nevertheless, they could not sleep, they carried her to their bed, and Tara held Ashlyn's hands so that she could not bite her skin or rub her eyes at night.
When their daughter was five years old, the Blockers decided that the only way to find a person like Ashlyn in the world was to make themselves known. They contacted the local newspaper, The Blackshear Times, and in October 2004 they published an article about Ashlyn. The Associated Press also circulated the article, and Tara remembers how Ashlyn's photo then ended up on the MSN home page next to images of George W. Bush and John Kerry. Ashlyn's grandmother in Virginia saw this photo at work and called Tara in Georgia. “Have you seen Ashlyn on the World Wide Web? She asked. "A girl who does not feel pain!" Turn on your computer! " By this time, of course, the Blockers already knew everything. “They already got a call from Good Morning America.
The Seven Blockers were flown to New York, where they attended Good Morning America, Today Show and Inside Edition. Everywhere they told the story of Ashlyn's self-inflicted wounds. When they flew back to Jacksonville, people were already recognizing them at the airport. They were interviewed by a specially arrived group from the French news channel, as well as correspondents from the BBC. Reporters from a Japanese television station presented them with bamboo chopsticks. They were also called by TV presenter Oprah, but they never made it onto her program. They also agreed to an offer from Geraldo Rivera and turned down Maury Povich. On January 24, 2005, Ashlyn appeared on the cover of the famous People magazine along with Brad Peet and Jennifer Aniston (Gennifer Aniston) under a large yellow headline: "Brad and Jen: Why They Broke Up."
All this media attention eventually allowed the Blocker family to establish contact with scientists who could help them understand their daughter's condition. Dr. Roland Staud, professor of medicine and rheumatology at Florida State University, heard about Ashlyn and invited the Blockers to Gainesvill, where he had been doing research on chronic pain for 15 years. The consequences of Ashlyn's condition were very serious. It is a natural anomaly. Over the next several years, Dr. Stoud tested Ashley's genetic material and eventually discovered two mutations in her SCN9A gene. It is this gene, mutating in a special way, that leads to the emergence of very strong painful sensations, as well as to the appearance of chronic pain syndrome. Stud reasoned this way: if he can understandas such a mutation occurs, he will be able to correct this deficiency in people suffering from chronic pain.
The link between this gene and the intensity of pain was discovered in 2006 by an English geneticist named Geoffrey Woods in Cambridge, England. “I used to work in Yorkshire, where many Pakistanis immigrated,” and where there were many cousins and second cousins marriages, Woods said when we spoke to him about the case. “I've seen a huge number of children with genetic diseases,” he added. An obstetrician who came to England for a course convinced Woods to go to Pakistan and do his research there. On one of his trips, he was asked to see a boy in Lahore who was said to be pain free. “I agreed and we went to see him,” Woods said. They were met by his mother and father, who said that the boy was dead.
“On his birthday, he wanted to do something special for his friends and decided to jump off the roof of the second floor of his house,” Woods told me. - And he did it. Then he got up from the ground and said that everything was fine with him, but the next day he died of a hemorrhage. I realized that pain has a different meaning than I had previously assumed. The boy did not have a painful sensation that could limit his actions. When I returned to England, I found three more families whose children were in the same condition - they had numerous wounds, bitten lips, bitten tongue, bitten hands, fractures and scars. And in some cases, children were nearly taken away from their parents because they were suspected of cruel treatment."
Woods and his colleagues began researching the genes that cause this disorder and eventually came up with the SCN9A gene. Pain-sensing nerves on the surface of the body usually react when we touch something hot or hot, after which they send electrical signals to the brain to make us react. These electrical signals are generated by molecular channels created by the SCN9A gene, said Stephen G. Waxman, professor of neurology at Yale University School of Medicine. Ashlyn's mutations prevented the gene from creating these channels, and therefore electrical impulses do not occur at all.
“This is an unusual disorder,” Woods said. - Boys die at an early age due to their riskier behavior. This is very interesting and allows you to understand the following: pain exists for several reasons, and one of them is to get a person to use his body correctly, without harming him, and also gives you the ability to control what you do."
When I visited Roland Staud's office in September of this year, he initially showed little desire to speak. When I described my week with Ashlyn to him, he began to talk about her as if it were his own child. There was a photograph of her on the notice board behind his desk. He watched her as she released paper pigeons in the lobby of the clinic after many days of testing, and every year he posed for a photo with her family. He watched her grow up. “Her life story provides an astounding snapshot of how difficult a life without pain guidance can be,” said Stoud. "Pain is a gift, and she is deprived of it."
When Ashlyn was nine years old, Stoud asked John and Tara for permission to conduct a series of medical tests to determine Ashlyn's level of sensitivity. It recognizes tickling and can feel a pinprick, but it is unable to detect extreme temperature levels. He also conducted a series of psychological tests with her and tried to find out if she had the ability to feel emotional pain and empathy, and concluded that Ashlyn was a very gifted and affable girl.
Stoud wondered what would happen to Ashlyn as a teenager if she stopped obeying her parents, and how this would affect her health. “We know very little about this phenomenon in the long term,” he said. - What would her emotional state be? How would it develop? " We sometimes experience emotional pain physically - Stoud gave the traditional example of the great grief and physical pain that occurs when a love relationship is broken - and he tried to understand if the relationship between body and emotion could go backwards. He asked himself the question, will a person who does not feel physical pain experience a certain degree of developmental delay? “It is possible that she has some painful sensations, - said Stoud, referring to Ashlyn. - This is one of the reasons,on which we are monitoring it. She is currently going through a period of hormonal changes. The period of puberty begins. Will she be afraid of this? She is only threatened by emotional consequences. She is a very calm girl and her parents have learned to influence her without resorting to physical contact. " Stoud paused and then added, "I don't think she cries often."
But in fact, Ashlyn sometimes cries. She cried when her beloved dog was lost earlier this year. After that, Ashlyn lay curled up in a ball for a long time in bed with her parents. “She's able to empathize,” Tara told me. - She's really capable of it. I do not know if the doctors were able to establish this in the course of their research. But I know that she can, I know it in my heart."
A heavy rain one night when I was visiting them turned the reddish driveway in front of the Blockers' house into a real lake. John came home from work drenched to the skin and pulled a bottle of Mountain Dew from the refrigerator. He works for the telephone company Alma, and frequently drives his truck down Highway 84 past the flags of the Georgia Bulldogs at their homes, as well as several billboards showing Patterson as "One of America's 50 Best Cities for Parenting." In and around the city, he is known as the “telephone man,” and is often the person who is approached at odd hours, rather than the telephone company, and asked to help John solve their problem.
“Something happened to me the other day,” he said, drying out a little. - I was at school, and suddenly some person says to me: “Let me ask a question. Maybe it will be a little weird, I just want to use this as an example. You mean to say that if she was going to, say, cut off her hand …"
“My God!” Tara exclaimed at that moment.
“Well, I, sort of, say - what a horror! John continued. - And he says, OK, that is, you mean to say that she would not feel anything? Well, I say: "She would see it and be scared." Well, he says: "Yes, yes, but would she not be hurt?" And I say: "No", but he: "This is amazing."
Ashlyn, who was sitting at the kitchen table, supporting her head with her hands, looked at us, smiled and said: "Why should I cut off my hand?"
John and Tara heard Ashlyn scream and say "Ouch" as she witnessed someone else getting hurt. And Ashlyn did the same when her father told how he had put a nail right in his thumb while building a chicken pen, but she had no idea why his face turned red, why he screamed and raised his thumb up. She said that over the years she had carefully studied the reactions of other people and learned to shrink when someone described something painful.
"Daughter, what happens in your head when you see that someone hurt yourself?" John asked her.
“I feel sorry for them,” she replied. - Because they are in pain, and I am not. And I would like to help them."
“Describe your understanding of pain,” John asked. "What does this mean for you?"
"I dont know".
"When you see someone else in pain, what do we associate it with?"
"I think it must hurt."
"What does it mean to hurt?"
Ashlyn narrowed her eyes to show that she was deep in thought. But she was never able to answer this question.
One Saturday morning last year Ashlyn woke up in the afternoon - she likes to sleep long. Then she entered the living room and said to her mother, "I had a dream." Tara thought Ashlyn was going to tell her some fantastic story, but instead she said, "In my dream, I organized a camp for kids like me." She said that in a dream she saw a lake and boats, and still very vividly imagined children running there, whom she did not know before.
This is how the idea of Camp Painless But Hopeful was born. Tara called Camp Twin Lakes in Winder, Georgia, a four-hour drive from Patterson, and asked them about the possibility of a weekend for children without pain. The camp leadership agreed. Tara will act as a coordinator and will pay for the lodging, insurance and meals, while the camp administration will take over the preparation of the food.
The blockers prepared T-shirts and stuck stickers on their cars. A local radio station gave them free time to announce a fundraiser at a barbecue at the Rite-Aid pharmacy car park in Blackshear. Ashlyn sold several wallets and jewelry made by herself to her friends there. Tara advertised the camp on a special Facebook page called “The Gift of Pain,” run by a support group for families where children are insensitive to pain. "Anyone interested in attending a camp for families like ours?" Eight families gave their consent.
The camp was organized in early November, when the weather in Georgia gets cooler and the temperature is more favorable for children who can hardly sweat. Experts have identified three genes associated with congenital insensitivity to pain, and they suspect there are more genes of this kind that have not yet been found. Some of the children who came to the camp had a mutation in the NTRK1 gene, which is associated with the development and maturation of the nervous system and which, in addition to insensitivity to pain, causes mental retardation, frequent colds, and a tendency to self-mutilation.
11-year-old Roberto Salazar from Indianapolis, who came to camp with his mother, had just such a mutation, and in a short period of his life he had already managed to bite off part of his tongue, pull out his teeth and cripple his ankles with his own weight. Once he jumped a whole flight of stairs. He is forced to spend most of the year at home in an air-conditioned room, because he does not sweat at all, and his body temperature can change very quickly, which is very dangerous. Roberto's mom Susan saw Ashlyn's name in an article a few years earlier and contacted Tara. Since then, they have kept in touch, sharing stories about their children. Roberto arrived at the camp on a scooter. He rolled other children on it, giving them pleasure.
The Brown family from Mapleton, Iowa, arrived at the camp in a truck of nine people, and among them was a three-year-old child named Isaac. When Isaac was very young, he dipped his entire hand into his mom's cup of hot coffee without crying. He also put his hands on the hot stove and received a third-degree burn, but did not cry. His parents took him to a neurologist who recommended genetic tests, but the boy's family could not afford it. But after cutting off his eyelashes with toenail scissors, his mom, Carrie, told her husband, "I can't stand this anymore." In 2010, they took their son to the Mayo Clinic in Rochester, Minnesota. The doctors told Carrie that they believed her son had a congenital insensitivity to pain, but they needed to find the same gene.in which the mutation occurred. They included Isaac in their research, and a long process of searching for an explanation began, but so far, according to Carrie, it has not yet been found.
Carrie Brown found Tara on the internet, and they came to the conclusion that this exciting opportunity should not be missed - spending some time with other parents who share this frightening experience of living with children who can inadvertently harm themselves. The Brown family has seven children, and they live off the salary of their husband, who is a registered nurse. However, they decided to go to Georgia anyway, even if it means they won't be able to pay other bills because of it. The church gave them $ 400 as a gift, and with this money, the Brown family was able to fund their trip. They traveled for 18 hours and spent the night at Motel 6 in Chattanooga, Tennessee, where they unsuccessfully tried to get a hotel employee to let all nine family members stay in the same room.
The Browns were the first to enter camp. When the Blockers arrived, Tara got out of the car and hugged Carrie, who was standing next to her truck. They both burst into tears.
“I just… I don't know how to explain it,” Carrie said. - It seemed to me that I finally met another mother who understands me, who will not blame me for being too careful, because she knows how important it is. She understood that."
On her first night at camp, Ashlyn cooked some of the traditional desserts, s'mores, and then took a hay truck ride with the other children. She watched a puppet show. She also appeared on a hanging rope. She danced. Little girls especially attracted her. She held them and stroked them gently on the back. She helped them decorate the stones for the passage, including beads - these were small concrete blocks that will now permanently be in this place in memory of the camp held there. “It was just great to see kids like me,” Ashlyn said.
Karen Cann's life was wonderful, but there was also a lot of pain, although she never felt it. When she and her sister Ruth were children and lived in Scotland, no one could explain what was happening to them. Like the Blockers, their parents lived in fear - they were afraid that the girls might harm themselves in any way, and they, instead of looking for people like them, preferred not to stand out. "We didn't want to be considered insane," Cann, 35, told me, then added, "But I think we're insane." Neither Karen nor her sister can sweat much, and they lack the ability to smell. (Ashlyn's parents also discovered that their daughter did not smell when she began to overuse perfume, spraying it from a bottle. Then it turned out that she just liked the feeling of this light cloud). Over time, they constantly developed burns and scars, and their limbs often ended up in a cast, and doctors asked their mother biased questions.
“We didn't even know what was happening to us or what to call it,” Cann said. Only after she turned 20 did she begin to seriously look for answers to these questions. “I wanted to send e-mails to the doctors and try to get answers to these questions that way. My sister Ruth and I were shown to a doctor at the Liverpool Institute, where pain studies. And I also sent a letter to the Addenbrooke clinic. And then this letter was forwarded to Dr. Woods."
Karen Cann was 29 when Woods first met these sisters. “We just told him everything that happened to us,” she said about their first meeting. - It was like a psychological consultation. Poor Doctor Woods! They wanted to know why they couldn't smell. When they were growing up, they were not sure if they could smell or not, as their sense of taste was not lost. He blindfolded them and brought an orange and coffee to their noses. No reaction. He tested their blood and soon informed them of the mutation in their SCN9A gene.
“People think we're hysterical or weird if you tell them that you don't feel pain,” Woods told us. - Perhaps you do not really want people to know about this. We have found that families are reluctant to share this diagnosis with others and prefer to keep it secret.” Therefore, Woods suggested that such cases are not as rare as commonly believed. “I think there are more than one in a billion,” he said, “or even a million. Adults with this disorder often go unnoticed because they hide it."
When Tara met Cann online in 2009, she emailed her and told her how happy she was to find someone she could talk to, someone who could be an example for Ashlyn. Tara also wanted to know more. How is Cann's life going? Does she feel hot or cold? Does she sweat? Tara also knew that Cann had a husband and a child. What does it mean to be a mother and not feel pain?
“In response, I sent her a rather long e-mail as I wanted to reassure her and tell her that this feature was not an obstacle in the life of my sister and me,” said Cann. “I knew Ashlyn was still very young, and it was clear to me that Tara had a difficult time ahead.”
When Cann was the same age as Ashlyn, she started puberty and became interested in boys. She also remembers that she was bothered by the scars and therefore hid her legs under long dresses. She was very shy about her peculiarity. She remembers touching other girls' hands and feeling how soft and graceful they were compared to her own, which was rough and scarred. But then it became easier for her, she told Tara, and she and her sister graduated from school, and then successfully studied at the university. Each of them had loving partners, great friends, and a normal job. When she made love to her husband, she felt pleasure, or at least she thought she might. “Intimacy is very pleasant,” she told me. - Perhaps my feelings are somewhat different,but it's still nice. She learned to live with her peculiarities, she said, and began to understand what things can hurt her - this process continued almost all her life. However, a deeper understanding of the existing problems allowed her to cope with the role of an adult.
Cann gave birth to her first child at 31 years old via a caesarean section. The girl who was born was healthy, but after that, Cann felt some numbness on the right side. She returned home and monitored her condition closely for several weeks, but the numbness became more noticeable - although it was not painful. This continued until the moment when she heard some kind of crunching inside her body and began to experience difficulty walking. She went to the doctor and explained to him that she did not feel pain, but she was sure that something was wrong with her and asked for an X-ray. The doctor said that she probably had postpartum depression and should receive appropriate treatment. But she insisted on her own, and eventually it turned outthat her pelvis was damaged during childbirth and internal bleeding opened. She spent the next six months in the hospital and could not walk at all.
As a result, the pelvis was healed so that one leg was shorter than the other, and she had to wear special shoes in order to compensate for this deficiency. Other than that, however, there were no long-term disorders, and in 2011, Cann gave birth to her second child - this time a son - and also by caesarean section. This time the X-ray was taken right after the birth and everything went well.
Tara continues to correspond with Cann. “She gives me the opportunity to understand what awaits Ashlyn in the future on her path in life,” said Tara. "If something happens that I don't understand, I know that I can contact her and ask if something similar has happened to her."
Before Cann met Tara and found out about Ashlyn, she didn't like telling people about her personality. “She inspired me,” said Cannes. - My sister and I viewed our identity in a negative way - this was probably due to the physical damage caused, as well as the emotional pain and stress that our family experienced. But now I decided it was time to get something positive out of it. I want people to know more about this. I am also even more inspired by the possibility that doctors can use me as a guinea pig to further study the phenomenon of pain, as well as to develop drugs that can be created based on the study of my body.”
Despite all the support on the social network Facebook, despite the exchange of photos and the feeling that Cann and Ashlyn are connected with their experiences of their lives, despite all this, Cann never met the Blockers or spoke to them on the phone. When I asked her why she didn’t do it, she said, “I think I would have done it if it weren’t for what I had to go through a few years ago.” She was referring to the despair she experienced after the injury to her pelvis. In that moment, she realized that not being able to feel her own pain meant that she might not only endanger herself, but she might not be able to fully care for her child.“Emotionally, I am still very weak and I would not want to get upset during a phone call and thus scare Tara about Ashlyn's future,” she said. “Not in the sense that the same thing could happen to her. But parents are worried, right?"
Sometimes it seemed as if the entire city of Patterson was a kind of network with external receptors for pain and awareness of the danger that a girl who does not feel pain could expose herself to. “She cut her leg once,” said Michael Carter, her music teacher at Pierce County High School. “I don’t know, maybe the music stand fell on her then, but anyway she got blood on her leg.” One could sense in conversation with many people at Patterson that Ashlyn had a strange and special place in their lives, that they were proud of her and worried about her. “High school can be traumatic for some children,” Carter said. - but it seems to me that she somehow coped with it. She says, "Here I am." She can tell you about it. She loves to hug - she is a very cheerful person."
Her art teacher Jane Callahen talked about her imagination, how she sees things a little differently. She is good at noticing details. And her homeroom teacher Corey Lesseig explained how important it is for her to live in a city like Patterson where everyone knows and understands her, and she can feel comfortable being herself. And he also said, "I ask myself, what will happen to her when she grows up?"
Watching her putting on her backpack, walking down the hall, watching her on weekdays during a soccer game, painting class, or rehearsal for her clarinet group, I found it hard to think of her as a representative of a handful of people on earth, whose bodies contain a mystery that can help solve the riddle associated with a person's pain. As Stoud said when we met in Gainesville, they just scratched the surface of what Ashlyn could tell you. Most likely, she will still be studied for many years, and she, as well as her parents, are already used to this, to the tests being carried out and to the realization that she, like Karen Cann, nickname