How to live, if you do not feel pain

November 26, 2012 10:18

Girl, do not feel pain, was in the kitchen and stirred noodles. At this point, the spoon slipped from her hands and fell into a pot of boiling water. The girl then went to school in the second shift, the TV is in the living room, and her mother folded bedclothes on the couch. Without hesitation, Ashlyn Blocker (Ashlyn Blocker) lowered his right hand in the water to get a spoon and pull it out of the water and looked at it in the light board.

Photo: The New York Times

Then she went to the sink and sent a stream of cold water on all the little faded white scars, and then called out to his mother, "I just looked down there fingers!" Her mother, Tara Blocker (Tara Blocker) left his clothes and ran to her daughter. "My God," — she said — after 13 years of the same fear — and then she took a few ice cubes and gently put their daughter's hand, a little comforted by the fact that the wounds were not as terrifying.

"I showed her how to use the other items in the kitchen can get a spoon out of the pan" — Tara said as she with a tired smile on his face told me this story two months later. "But there is another problem — admitted Tara. — She was using curling hair, and they are very hot. "

Tara sat on the couch in a tank top with the words "camp I live without pain, but with hope» (Camp Painless But Hopeful). Ashlyn has settled on the carpet in the living room and engaged in knitting bags of skeins that have accumulated in her room. Her 10-year-old sister of three hundred (Tristen) slept in a leather chair in the arms of his father, John Blocker (John Blocker), who settled there after work, and gradually fell asleep, too. In the house smell of homemade pasta and cheese, cooked for dinner. Heavy rain in South Georgia drumming on the downpipes, and lightning occasionally lit area for training baseball strikes, and a swimming pool in the courtyard of the house.

Without taking his eyes off her crochet hooks, Ashlynn entered into conversation, and added one more detail to the story of his mother. "I just thought then that I did?".

I spent more than six days in a family blocker, and I saw that Ashlyn behaves like a normal 13-year-old girl — combing hair, dancing and jumping on the bed. I also watched as she rushes like crazy at home, not thinking about my body, and my parents asked her to stop. She also fought in air hockey with her sister, while struggling beat the puck on the table, trying to do it as quickly as possible. When she made sandwiches in a skillet, her hands touched the bread, as my mother had taught her: she had to make sure that the bread is cool enough, and it can have. She can feel the heat and the cold, but this does not apply to more extreme temperatures at which normal people feel pain and immediately pulls his hands.

Tara and John did not feel totally relaxed when they leave Ashlyn one in the kitchen, but it had to do — it was a concession to her growing independence. They made a rule for myself to tell stories about what it is responsible girl, but each of them should have the accompanying story, listen to that was not so easy. Ashley once burned his hands when she was two. John used a high-pressure wash the driveway and left the engine running, and at a time when they lost sight of Ashlyn, she went over to the machine and put my hand into the muffler. When they lifted them, the skin was burned. Another was a story about fire ants, attacked her in the backyard and had time to more than a hundred times its bite, while she looked at them and shouted, "Ants! Ants! "One time she broke her ankle, but then ran for two more days, until the parents do not understand — what is wrong. They told these stories so calmly, as if it were in them was about three hundred in a softball game or the technique to hit their son Derek (Dereck) in the game of golf, but it was obvious that after all these years, they continue to think about how to protect the life of his daughter.

A couple days after the story about lowering your hands into boiling water, Eschlin was in the kitchen and played with a bandage on his head, with which she leans back her long dark brown hair. We've all been busy of graffiti wipes, playing checkers and listened to the three hundred and Ashlyn sang a song «Call me maybe», but then Tara screamed and held up the hair of his daughter. In Ashlyn's head was dripping blood. Her dressing dug her skin throughout the day, when we were sitting there.

Ashlyn almost always wears a headband and slippers, as well as the doctor prescribed her glasses in the dark frame, and even bracelets of beads, which she keeps in an old jar of cucumbers company Vlasic. She sells her knitted handbags at five dollars to friends in high school, Pierce County (Pierce County Middle School). When she laughs or smiles, you can see the transparent tray Invisalign, as metal braces could hurt her tongue or gums, and she did not notice. She is also a medical identification label, which it attaches to the silicone bracelet, match the colors of her clothes. On its reverse side is the inscription: "I do not feel any pain — sweating a minimum."

In school, it was asked, is not it Superman? Does it feel the pain when someone hit her in the face? Can it go on hot coals as on ordinary grass? Whether she would be hurt if she was stabbed in the arm? The answers are: no, no, yes, no. It can feel pressure and texture. She feels a hug and a handshake. It all felt when her friend Kathy painted her toenails. "People do not understand me! — She said one day when we were playing checkers on her planshetnike iPad. — All the guys in the class I asked about it, and I say, "I feel the pressure, but I do not feel pain." The pain! I did not feel it! I constantly have to explain it to them. "

When Ashlyn was born, she did not scream. It issued a barely audible sound, and her eyes on the red little face close watch. After birth, she had such a terrible irritation that Tara even frown, bathing her, and then told her to change pediatricians recipe, apply ointment on the inflamed areas and keep them dry. "But I kept thinking about what she is not crying — Tara said. — Doctors have rejected these concerns, but we continued to ask the question: What is going on? "

When Ashlyn was three months Blockers moved from Northern Virginia in Patterson, Ga., where the family of Tara. When Ashlyn was six months she blushed and swollen left eye. Doctors suspected acute conjunctivitis, but Ashlyn did not respond to medication, and Blockers then turned to an ophthalmologist, who discovered the extensive damage to the cornea. Ophthalmologist suggested that the girl is not the sensitivity of the cornea and forwarded them to the children's hospital Nemrous Children's Clinic in Jacksonville, Florida. It took some time for an appointment, but before their departure to Jacksonville Ashlyn brushed his nose and almost chewed part of his first erupted in her teeth.

The clinic doctors took a blood sample from Ashlyn, had scan of her brain and spine, but these tests did not give any definite results. Over the next 18 months were further study. Biopsy of nerve on the back of her legs left scars that are incurred during a race. When the doctor finally told her the diagnosis, Tara was afraid she would forget all these words, and so I asked them to write down. The doctor took out a business card and wrote on the back: "Congenital insensitivity to pain."

The doctor told us that we are alone here — Tara said. — And this is a very rare case. He told us that we followed closely behind her and that doctors do not know much about this disorder, and therefore nothing special not help. It sounded as if he said, "Well, good luck!"

House of Tara introduced the word "congenital insensitivity to pain" into a search engine and began to learn the material. They were not so much, and they mostly dealt with the injuries and early death. No comforting advice was not there.

"Neither John nor I never heard of such things, — she said. — It was unbelievable. And it was scary. " They received help from people in Patterson, municipal settlement with less than 700 inhabitants. When Ashlyn started to go to school, the teacher watched her in the school yard, one person has been specifically tasked with the fact that she was all the time it was all about the Cay. The nurse was washed her eyes and checked her shoes every time she came to school after the holidays. She called it "Pit-stop for road racing Nascar» and saw to it that in the eyes there was sand, which could damage the cornea. It also examined the scars on her legs. "It has sharpened our ability to observe, — Tara said. — I have learned to see some things before they happen. "

Blockers rid of furniture with sharp corners. They have to lay on the floor is very soft carpets. They did not allow Ashlyn rollerblade. These wraps her hand in several layers of cheesecloth to she could not brush them. They used a special baby monitor in her room in order to hear the sound coming from your teeth while chewing. But, nevertheless, they can not sleep, they moved her to his bed, and Tara held her hands Ashlyn to that night she could not bite your skin or rub your eyes.

When my daughter was five, Blockers decided that the only way to find the person in the world, similar to Ashlyn, is to give an effect. They made contact with the local newspaper The Blackshear Times, and in October 2004 it published an article about Ashlyn. The Associated Press also extended this article, and Tara remembers after that photo Ashlyn was on MSN portal home page next to the image of George Bush and John Kerry. Ashlyn's grandmother in Virginia saw this picture at work and called Tara in Georgia. "You saw Ashlynn on the Web? — She asked. "Girl, do not feel pain!" Turn your PC! "By this time, of course, already knew everything Blockers. "They have already called the program" Good Morning America »(Good Morning America).

Blocker family aircraft were sent to New York, where they were the guests of the "Good Morning America" as well as gear «Today Show» and «Inside Edition». They all told the story of how she Ashlyn inflicted wounds of. When they arrived back in Jacksonville, people have come to recognize them at the airport. They interviewed a special trip of the French news channel, as well as the correspondent of BBC. Japanese TV reporters gave them bamboo chopsticks. They also called TV host Oprah (Oprah), but in its program and they have not got. They also agreed to a proposal from the Herald Rivera (Geraldo Rivera), and refused to Maury Povich (Maury Povich). January 24, 2005 Ashlyn was on the cover of the famous People magazine with Brad Pitt and Jennifer Aniston (Gennifer Aniston) a large yellow headline: "Brad and Jen: Why they broke up."

All this attention from the media would ultimately blocker family to contact the scientists can help them understand the condition of their daughter. Dr. Roland Staud (Roland Staud), professor of medicine and a rheumatologist at the University of Florida, heard about Ashlyn Blocker and invited to Gainesville (Gainesvill), where he has for 15 years been studying chronic pain. The consequences of state Ashlyn were very serious. It is a natural anomaly. Over the next few years, Dr. Staud tested genetic material Ashley and eventually found two mutations in its gene SCN9A. It is this gene mutant in a special way, leads to very severe pain, as well as to the emergence of chronic pain. Staud reasoned that if he could understand how such a mutation occurs, it will be able to correct this deficiency in people suffering from chronic pain.

The link between this gene and the intensity of pain was found in 2006 by British geneticist named Jeffrey Woods (Geoffrey Woods) in Cambridge, England. "I used to work in Yorkshire, where immigrated many Pakistanis," and where there were many marriages between cousins and second cousins, said Woods, when we talked with him about the case. "I saw a lot of children with genetic diseases," — he added. Obstetrician, who came to England for a course, convinced Woods to go to Pakistan and spend their research. During one of his trips, he was asked to see the boy in Lahore, who was said to not feel pain. "I agreed and we went to see him," — said Woods. They were greeted by his mother and father, who said that the boy had died.

"On the day of his birth, he wanted to do something special for my friends and decided to jump off the roof of the second floor of his house — told me Woods. — And he did it. Then he stood up and said that he was all right, but the next day he died of a hemorrhage. I realized that the pain has a different meaning than I thought before. The boy had no pain, would restrict his actions. When I returned to England, I found another three families whose children were in the same position — they had numerous injuries, bitten lip bitten tongue bitten hand fractures and scars. And in some cases, the parents almost selected children because they were suspected of abusing them. "

Woods and his colleagues began to conduct research on those genes that cause the disorder, and eventually came to the gene SCN9A. The ability to perceive pain nerves on the surface of the body usually react when we touch a hot or spicy, and then they send electrical signals to the brain that cause us to react. These electrical signals are generated by molecular channels created by the gene SCN9A, says Stephen Ueksmen (Stephen G. Waxman), Professor of Neurology, Faculty of Medicine at Yale University. Descended from Ashlyn gene mutations are not allowed to create these channels, so the electrical impulses do not arise.

"This is an unusual disorder — said Woods. — Boys are dying at an early age because of their more risky behavior. This is very interesting and allows you to understand the following: there is pain for several reasons, and one of them is to make a person use your body correctly, without inflicting damage, and also allows you to control what you're doing. "

When I visited the office of Roland Stauda in September this year, he initially did not show much desire to speak. When I described to him the next week together with Ashlyn, he began to talk about it as if it was his own child. On the bulletin board at his desk hung a picture of her. He watched her as she was blowing paper doves in the lobby of the clinic after many days dedicated to the test, and each year he posed for a photo with her family. He watched as she was growing up. "Her life story provides a striking snapshot of how difficult life can be devoid of guidance from the pain — Staud said. — Pain — is a gift, and she denied it. "

When Ashlyn was nine, Staud asked John and Tara's permission to conduct a series of medical tests to determine what level of sensitivity has Ashlyn. It detects and may feel tingling pinprick, but it is not able to capture extremes of temperature. He also had with her a series of psychological tests and trying to figure out whether it had the ability to feel emotional pain and compassion, and came to the conclusion that Ashlyn very talented and friendly girl.

Staud wondered what would have happened to Ashlyn in adolescence, if it ceased to obey their parents, and how it would reflect on the state of her health. "We know very little about this phenomenon in the long term — he said. — What would be her emotional state? As if it has evolved? "We sometimes feel emotional pain physically — Staud led a traditional example of a great sense of grief and physical pain that occurs at break of love affairs — and he was trying to understand whether the relationship between the body and the emotions go in the opposite direction. He asked himself, would not be a man, do not feel physical pain, to some extent, the delay in development? "It is quite possible that some of the pain in her present — said Staud, talking about Ashlyn. — This is one of the reasons that we are watching her. She is currently going through a period of hormonal changes. A period of sexual maturity. Scared if she did? She was threatened only emotional consequences. She is a very calm girl and her parents have learned to influence it, without resorting to means of physical contact. " Staud paused, and then added: "I do not think she cries often."

But in fact, Ashlyn sometimes cries. She cried, when at the beginning of this year, lost her beloved dog. After that Ashlyn long lay curled up in bed with their parents. "She is able to sympathize, — told me Tara. — It is really capable of doing that. I do not know whether doctors were able to fix it in the course of their investigations. But I know that it can, I know it in my heart. "

Heavy rain one night, when I was their guest, turned reddish driveway in front of house Blocker is a lake. John came home from work, drenched to the skin, and pulled out a bottle from the fridge soft drink Mountain Dew. He works at the phone company Alma, and often rides his truck on Highway 84 past the flags athletic teams Georgia Bulldogs, hanging at home, as well as by a number of billboards on which Patterson described as "one of the 50 best cities in America to raise children." The city and the surrounding area is known as the "telephone man," and often it is to treat it at an inopportune time, and not the phone company and ask for John to solve a problem they have.

"With me the other day something happened — he said, a little prosohnuv. — I was in school, and suddenly a man said to me: "Let me ask a question. Maybe it will be a little strange, I just want to use this as an example. You want to say that if she was going to, say, cut off your hand … "

"My God," — cried at this point Tara.

"Well, I'm, like, say — how awful! — Continued John. — And he said, O-Okay, so you want to say that it would not have felt? "And I say," It would have saw it and was frightened. " But he said: "Yes, yes, but she would not be hurt?" And I say, "No", but what he said: "It's amazing."

Ashlyn, who was sitting at the kitchen table, supporting the head in his hands, looked at us, smiled and said: "Why should I cut off my hand?"

John and Tara heard Ashlyn cried out and said, "Oh," when she became a witness of how someone else gets hurt. And Ashlyn did the same thing when her father told how he stabbed himself in the nail right thumb during the construction of the pen for the chickens, but she did not understand why his face turned red, why he cried and held up his thumb. She said that for many years carefully studying the reaction of other people, and learned to shrink when someone describes something painful.

"My daughter is going on in your head when you see someone hurt themselves?" — John asked her.

"I feel sorry for them, — she said. — Because they are in pain, and I'm not. And I wanted to help them. "

"Describe how you know pain — John asked. — What does this mean to you? "

"I do not know."

"When you see someone else in pain, with what we assotsiiruesh?"

"I think that it should not hurt."

"What does it hurt?"

Ashlyn's eyes narrowed, thus showing that she was deep in thought. But she was not able to answer this question.

One Saturday morning last year Ashlyn woke up in the afternoon — she loves to sleep long. Then she went into the 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 her dream she saw the lake and the boat, and still vividly imagined running there children, whom she had not previously known.

That is how the idea to the organization "Camp No pain, but with hope» (Camp Painless But Hopeful). Tara called the camp called Camp Twin Lakes in Winder, Ga., located four hours away from Patterson, and asked them about the possibility of the weekend for the kids not to feel pain. The camp has given its consent. Tara will act as a coordinator and pay for accommodation in houses, insurance, food, and camp administration will take on cooking.

Blockers produced T-shirts and stickers pasted on their cars. The local radio station gave them free time to announce the fundraising during the barbecue, hosted in the parking lot at the Rite-Aid Pharmacy in Blackshear (Blackshear). Ashlyn sold it to his friends made herself some purses and jewelry. Tara placed the advertisement of the camp on a special page in Facebook called "The Gift of Pain", organized a support group for families with children do not have the sensitivity to pain. "Anyone interested in attending the 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 almost can not sweat. Experts identified three genes associated with congenital insensitivity to pain, and they suspect that there is such genes, which have not been able to detect. Some of the children who came to the camp, there was a mutation in the gene NTRK1, which is associated with the development and maturation of the nervous system, which in addition to insensitivity to pain, causing mental retardation, frequent colds, and a tendency to self-mutilation. In 11-year-old Roberto Salazar (Roberto Salazar) from Indianapolis, who came to the camp with his mother, there was just such a mutation, and in a short period of his life he managed to bite off part of his tongue, pull out your teeth and ankle cripple its own weight. He once jumped a flight of stairs. Most of the year he was forced to stay at home in the conditioned space, because he does not sweat, and his body temperature can change very quickly, which is very dangerous. Mama Roberto Susan saw the name Ashlyn article a few years before and had contacted Tara. Since then, they keep in touch, share stories that take place with their children. Roberto came to the camp on a scooter. He rolled on it the other children, bringing them pleasure.

Brown family of Mapleton, Iowa, came to the camp in a truck in the amount of nine people, and among them was also a child of three named Isaac. When Isaac was a baby, he lowered his entire hand in a cup of hot coffee is my mom and do not cry. And he laid his hands on a hot stove, receiving third-degree burns, but did not cry. My parents took him to a neurologist, who recommended to conduct genetic testing, but the family of the boy could not afford it. But after he scissors toenails cut himself lashes, his mother Carrie told her husband: "I can not stand it." In 2010, they took her son to the hospital with the Mayo Clinic Rochester, Minnesota. Doctors told Kerry that, in their opinion, at her son's congenital insensitivity to pain, but they need to find the same gene in which a mutation has occurred. They include Isaac in his studies, and began a long process of searching for an explanation, but so far, according to Kerry, it has not yet found.

Carrie Brown Tara found through the Internet, and they came to the conclusion that you can not pass up an interesting opportunity — to spend some time with other parents who share with them this frightening experience of life with children who can unintentionally inflict self-injury. In the family, the Browns have seven children, and they live on the salary of her husband, who is a registered nurse. However, they decided in any case to go to Georgia, even if it means that they are not due to be able to pay other bills. The Church as a gift gave them $ 400, and the money Brown family able to finance his trip. They were on the road 18 hours and stopped for the night in the "Motel 6" in Chattanooga, Tennessee, where they unsuccessfully tried to get permission from the valet to stop all nine members of their family in the same room.

The Browns were in the first camp. When pulled up blocker Tara out of the car and hugged Carrie, who was standing next to his truck. They both cried.

"I just … I do not know how to explain it, — said Carrie. — I thought I finally met another mother who understands me, that will not judge me for being too cautious, because she knows how important it is. She knew it. "

The first night in camp Ashlyn prepared some traditional desserts — overcame (s'mores), and then take a trip to the truck with hay along with other children. She looked a puppet show. She also appeared on a suspended rope. She danced. She was particularly drawn to little girls. She held it and gently stroked their backs. It helped them to decorate rocks to traverse, including beads — it was a small concrete blocks, which will now be maintained on the site in memory of the camp is held there. "It was just great — to see these same children, as I do" — said Ashlyn.

In the life of Karen Cann (Karen Cann) was a lot of wonderful, but there was a lot of pain, even though she had never been felt. When she and her sister Ruth were children and lived in Scotland, no one could explain what was happening to them. As Blockers, their parents lived in fear — they are afraid of what girls can cause yourself any harm, and they, instead of looking for people like themselves, preferring nothing to stand out. "We did not want us to be considered abnormal," said my 35-year-old Cann and then added: "But I think we are abnormal." Neither Karen nor her sister almost can not sweat, and they do not have the ability to sense odors. (Parents Ashlyn also discovered that their daughter was not smell, when it became excessively use perfume, spraying them from the bottle. Then revealed that she just was nice to feel that a light cloud). Over time, they always appear burns and scars, and often turned their limbs in a cast, and their mother, doctors asked biased questions.

"We do not even know what's happening to us and how to call it," — said Cann. Only after she turned 20, she began to seriously look for answers to these questions. "I wanted to send a message to an e-mail to the doctors and try to so the answer to these questions. Me and my sister Ruth showed the doctor the Liverpool Institute, where he studied the problem of pain. And I also sent a letter to the hospital Addenbrooke (Addenbrooke). And then this letter was sent to Dr. Woods. "

Karen Cann was 29 when Woods first met these sisters. "We just put it all that has happened to us — she said of their first meeting. — It was like a psychological consultation. Poor Dr. Woods! "They wanted to know why they can not feel the smell. When they grew up, they were not sure whether they could smell it or not, because the taste they were not lost. He is blindfolded and brought to their noses orange and coffee. No reaction. He analyzed their blood and soon informed them of the mutation of the gene SCN9A.

"People see us as hysterical or strange, if you tell them that do not feel pain — told us the Woods. — You may not want people to know about it. We found that families are reluctant to talk about the diagnosis to others, and prefer to keep it a secret. ". Therefore, Woods has suggested that such cases are not as rare as one might think. "I think that there are more than one in a billion — he said — or even a million. Adults with the disorder are often overlooked, because they hide it. "

When Tara in 2009 met with Cann on the internet, she sent her an email and told her how happy she was to find someone with whom she can talk to, someone who can be an example for Ashlyn. Tara also wanted to know more. How is life Cann? Does it feel hot or cold? Sweats she? Tara also knew that Cann has a husband and child. What does that mean — to be a mother and not feel pain?

"In response, I sent her a very long letter by e-mail, because I wanted to comfort her and tell her that this feature was not an obstacle in the life of my sister and me, — said Cann. — I knew that Ashlyn is very young, and it was clear that in front of Tara difficult time. "

When Cann was the same age as Ashlyn, she started puberty and she became interested in boys. She also remembers that her scars and bothered so she hid her feet under a long dress. She is very shy of its features. She remembers how touched the hands of other girls and feel what they are soft and delicate in comparison with its own, which were rough and scarred. But then she felt better, she said to Tara, and he and his sister graduated from school and then successfully studied at university. Each of them had a loving partner, great friends and a normal job. When she made love with her husband, she had the pleasure, or at least she thought she could feel it. "Intimate relationships are very nice — she said to me. — Maybe my feelings are somewhat different, but it's still nice. " She has learned to live with its peculiarities, she said, and began to understand what things can it hurt — this process took almost all her life. However, a deeper understanding of existing problems allowing it to cope with the role of the adult.

Cann gave birth to her first child at age 31 by caesarean section. Girl was born healthy, but then felt a numbness Cann from the right. She returned home and carefully monitor your condition for several weeks, but the numbness became noticeable — although it was not painful. It was not until the moment when she heard a crunch in his body and began to have difficulty walking. She turned to the doctor and told him that she does not feel pain, but it is certain that it is something in the order and asked for a X-ray. The doctor said that it is likely to have postpartum depression and she had to take the appropriate course of treatment. But she insisted, and in the end it turned out that she had at birth was damaged pelvis and revealed internal bleeding. The next six months she spent in the hospital and could not walk at all.

As a result, pelvis heal so that one leg was shorter than the other, and she has to wear a special shoe to compensate for this deficiency. However, apart from that there were no long-term illness, and in 2011, Cann had a second child — this time, his son — and also by caesarean section. At this time the X-ray was taken immediately after birth, and all went well.

Tara continued to correspond with Cann. "It gives me the opportunity to understand what to expect in the future Ashlyn on her life's journey, — Tara said. — If something happens, I do not understand, I know that I can contact her and ask, it was not there something similar to it. "

Before Cann met with Tara and learned about Ashlyn, she did not like to tell people about their features. "She inspired me — said Kahn. — My sister and I saw the feature in a negative way — perhaps it was due to bodily injury, as well as emotional pain and stress experienced by our family. But now I have decided that it is time to get something positive from it. I want people to know more about it. I also further inspire the possibility that doctors used me as a guinea pig for the further study of the phenomenon of pain, and for the development of drugs that can be created on the basis of studying the characteristics of my body. "

Despite all the support in the social network Facebook, despite the exchange of photos and feelings that Cann and Ashlyn linked the experience of his life — despite all that Cann had never met blockers and never talk to them on the phone. When I asked her why she does not, she said, "I think I would have done it if it were not for the fact that I had experienced a few years ago." She was referring to the despair that she had a post-injury of the pelvis. At that moment, she realized that the inability to feel your own pain means that it can not only endanger itself, but may not be able to fully take care of their child. "Emotionally, I am still very weak, and I would not want to upset during a phone call and frighten thereby the future of Tara Ashlyn, — she said. — Not in the sense that the same thing could happen to her. But because parents show concern, is it? "

Sometimes it seemed as if the whole city Patterson is a kind of network with external receptors of pain and awareness of the dangers which may expose yourself girl do not feel pain. "One time she cut her leg — said Michael Carter (Michael Carter), her music teacher in the secondary school district Pierce (Pierce County). — I do not know, maybe then it fell a lectern, but in any event on the leg she got blood. " Could be felt in talking with many people in Patterson that Ashlyn took 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 I think that she somehow managed it. She says, "Here am I". She can tell you about it. She loves to cuddle — she was very cheerful person. "

Her teacher in the arts Jane Callahan (Jane Callahen) reported on her mind, that she sees things a little differently. It is well to notice the details. And ee homeroom Lesseig Corey (Corey Lesseig) explained how important it is for her to live in a city like Paterson, where all of her knowledge and understanding, and it can feel comfortable while remaining itself. And he said, "I wonder what will happen to her when she grows up?"

Watching as she dons her backpack as she walks down the hall, watching her during the week at a soccer game, art lessons or rehearsal group, in which she plays the clarinet, I realized that it is difficult to think of her as a representative of a handful of people in the world whose bodies contain a mystery that may help to guess the mystery associated with a feeling of pain in humans. As Staud during our meeting in Gainesville, they are only slightly scratched the surface layer that can be learned from Ashlyn. Most likely, it will still be studied for many years, and she and her parents have become accustomed to this, and to administer the test to the realization that, like Karen Cann, will never be able to fully defend himself. Every day she was able to better understand the world and she knows what it expects and what is necessary to prepare. Since then, many things have become easier for her, and the possibilities of her life extended. However it is impossible to imagine beforehand all the dangers, so she needs the help of all the people around her to be at present the necessary caution.

"It is normal, — said her mother. — People say, "I do not know how you deal with this? Do not you need to protect it? "Well, we say:" I do not know, come to us and say, do we need to do something different. "

How to live, if you do not feel pain («The New York Times Magazine», USA)
Justin Heckert (Justin Heckert)

Like this post? Please share to your friends: