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The Congenital Nevus Support Group



“Wonder” Written by RJ Palacio with the Cover Illustration by Tad Carpenter

Critique of book: This book tells the story of one year in the life of a facially challenged (some might say “disfigured”) 10-year-old boy who apparently has some type of variant of Treacher-Collins Syndrome. It is worth reading because it inadvertently gives a lot of examples of what NOT to do if one is facially or any-other-way challenged! The author admits she has had no personal experience in living life with a unique appearance. Unfortunately, that is quite obvious in the way she wrote the book.

In the book, August’s mother, who is his homeschooling teacher, decides that it is a good idea for Auggie to attend groupschooling, rather than continue the homeschooling he has so far done. Big mistake! HUGE!! Group schooling is a fake, superficial environment that is not found anywhere else. Never again in life, with the exception of boot camp perhaps, another equally artificial situation, will large numbers of human beings of exactly the same age be placed in direct, relentless competition with one another. Even in college, there are older students and atypical students. And the very LAST thing a facially-challenged child or any unusual child needs is direct, relentless competition. In fact, groupschooling is detrimental to even so-called “normal” kids. Only a few become “winners” in this hypercompetitive situation. Most become “losers” and inevitably give up early, with permanent, lifelong, detrimental consequences. I’ve met many 50 to 60-year-olds with profound regrets over their school years half a century ago. By age 14, most kids have mentally/emotionally “abandoned” school, even if they are still present physically. This is why half the population is now functionally illiterate, reading at best at a 6th grade level. Half the US population couldn’t read this critique even if they wanted to…..That is so sad…. Sometimes I wonder why parents throw their young, enthousiastic, energetic children into such a pressure-cooker during the most tender, vulnerable period in these young human beings’ entire lives? The exact time in life we are least able to handle hypercompetitiveness is the time we are drowning in it. The only answer I can come up with is that we humans tend to recreate our childhoods endlessly, passing on our dysfunction to the next generation, creating another cohort of people using addictions to medicate their childhood pain. Our parents create another generation of drinkers, druggers, overeaters, sex addicts, TV addicts, gamblers, workaholics, lazyholics , shopping addicts, exercise addicts, internet addicts, videogame addicts, hypochondriacs, disability addicts, money addicts, material-possession addicts, hoarders, etc, etc, etc. I wonder what Auggie would be like at age 50, under the burden of years of stress and pressure. Life is truly a marathon, after all…..

In addition to the negative hypercompetitiveness, the “socialization” in groupschooling situations is nearly 100% negative. Personally, I don’t know what benefit parents see in all the negative socialization. Perhaps they have forgotten the pain of their own school years. Even the few popular “winners” in groupschool situations agonize over one zit or one misstep, wondering if they will be toppled from their high perch among the “in” group as a result. Cliques, in/out groups, bullying, ostracizing, slavish imitating, peer pressure, gossiping, fighting, cajoling, ingratiating, sex, drugs, alcohol, you name it, it’s all there and it’s all negative. Yet many well-meaning but deluded parents, such as Auggie’s, continue to subject their kids to this torture. The author, RJ Palacio, does a reasonably good job of describing the negatives here, but misses the very obvious solution: a return to homeschooling! That would be a good idea for his sister, Olivia, too. Even Auggie mentions he had more free time as a homeschooler. Duh…..Group situations are always timewasters…. He who travels alone travels the fastest and he who learns alone learns the fastest. Groupschooling holds most back because everyone waits for the last or the slowest. With individual schooling, everyone proceeds very efficiently at their own pace. Trauma and stress are cumulative, and even more dangerous when they start in early childhood. Children are NOT resilient. We each only have a certain quota of trauma we can handle before we fall apart into dysfunctional behaviors such as acting out, addictions, or mental illness to self-medicate our emotional pain. Just ask any 50-year-old smoker, drinker, or overeater when they started their acting out and why. The answer usually goes back to childhood trauma. The Adverse Childhood Experiences (ACE) Study proved that conclusively. Auggie is facing a lifetime of increased stress and trauma due to his facial anomaly. Why pile more on than is necessary at age 10? By age 50, he may be maxxed out and may fall apart.

Groupschooling situations are dangerous. Kids do get murdered in groupschools, especially the larger ones. Auggie could very easily have been badly injured or even accidentally killed that night at the campout. Sort of like a Piggy situation in “Lord of the Flies.” Even nice schoolkids can temporarily become the equivalent of Nazi prison guards with strong enough peer pressure. What were the adults in this book possibly thinking of, when they placed Auggie in such a precarious position? As a child, I always thought adults were often out to lunch, and they sure were in this book! Only Auggie’s dad had a small amount of common sense, when he felt that groupschooling for Auggie was like “leading a lamb to slaughter….” Too bad he didn’t stick to his initial gut reaction, which was correct. I think our future alternative to groupschools will be the return of the one-room schoolhouse. Groupschools are too large, too complex, and too expensive for bankrupt countries such as ours to maintain much longer, anyhow. And there will be no money for transportation to such overly distant schools. The one-room schoolhouse was the foundation of this country. They were economical to maintain and easy to walk to. Transportation was not a problem. The kids got exercise on the way to and from school, so they were happy to sit still and learn once they got there. The focus remained on academics and wasn’t diluted by sports or cliques or whatever. One-room schoolhouses foster minimal competition because all ages and abilities are mixed together. The socialization will be more positive, for the most part, because students learn to cooperate together, with the older students helping the younger ones and the faster ones helping the slower ones. It’s much harder to have a clique in a one-room schoolhouse if there isn’t anyone to have a clique with!

How am I able to critique this book so forcefully? Because I was personally in the equivalent of Auggie’s situation. At age ten, Auggie’s age, I was just starting not my 1st, but my 4th new school. Imagine being a new girl four times by 5th grade and how hard that is….. Like Auggie, I looked different from everyone else in my class, with my giant nevus and 1000 satellites. But I was also of a minority ethnic background and minority religion. I came from “the wrong side of the tracks,” and was, fortunately and unfortunately, the most intelligent student in my class. So I was a nerdy brain, a speckled freak, a catlicker, a dumb Pollak, and the new girl in one single package. Believe me, all of that together was a prescription for total social failure. I never had a “Summer” or a “Jack Will” in my life. In real life, I don’t think they exist—or if they do, very, very rarely, and not something one can count on. I ended up eating lunch with the “special ed” kids as we called them back then. The “special ed” kids were developmentally disabled, and didn’t move away like other kids did when I sat at their lunch table. Summer and Jack give a fake sense of warmheartedness to the book, but in real life, when push comes to shove, peer pressure will be too much for them and they’ll side with the Nazi camp guards like Julian. It takes a huge amount of courage and the ability to resist extreme peer pressure for kids like Summer and Jack to associate with a class outcast. They run the risk of jeopardizing their own precarious social position in the class pecking order by befriending a “freak” like Auggie. Most kids, if not nearly all, don’t have the courage. Even my own cousins pretended they didn’t know me in school. And I can’t blame any of them, by the way. I don’t know what I would do in their exact situation, but I do know that in 3rd grade when I and one other girl, who was quite obese, and one other boy, who was mildly developmentally disabled, were the only ones in our classroom who didn’t have any valentines in our valentine bags, I didn’t send any to them and they didn’t send any to me. None of us outcasts could afford to befriend each other. If we did, it would clearly cement our class status at the bottom of the barrel for all to see. This way we could each pretend our bottom-feeder position in the class pecking order was a little nebulous. The one thing I do regret to this day, 48 years later, was that I didn’t think to send those two and myself a couple of anonymous valentines “from your secret pal,” so that the three of us would not have had to pretend to open up valentines during the class party, when everyone else opened up their real ones. During that veeeery loooong party, I simply pretended I had valentines in my bag by reaching in to “check.” I pretended I was opening them slowly about 10 times. And why couldn’t our teacher have checked whose valentine bag was empty, like I did, and stick a few cards in each empty bag herself? Why couldn’t my mother have told me to stick an anonymous valentine in those other 2 bags and my own? Did they both forget their own schooldays when the number of valentines received was a concrete measure of one’s popularity? I was a zero, nada, zip. Along with the other two misfits. It would have been a kindness to stick in an anonymous card or two, a kindness I figured out too late to help those other 2 kids and myself. But I was only 8 years old. I had an excuse. The adults didn’t. As I say, adults are clueless.

By the way, no parent with any common sense would give a boy who looks like Auggie a name like “August.” Appearance-challenged kids draw too much negative attention to themselves as it is, and we don’t need additional extraneous attention from an unusual name, or from anything else that is nonessential, that is for sure. For the most part, we want to “pass” invisible. Tom or Andy would make much better names, even though I personally think that “Auggie” is quite cute! What might work better is a name like “Thomas August Pullman.” And when Auggie is comfortable in his own skin, then he himself decides to go from “Tom” to “Auggie” if HE wishes. But the choice should be HIS! And I never had another kid go to bat for me like Jack did punching Julian out after Julian called Auggie a freak. In fact, “speckled freak” was my nickname in high school. Everyone called me that behind my back, although thankfully not too often to my face. I learned to suck all that up, but I deal with some of that childhood pain, even today, of course…. If one is in a groupschooling situation with no other options, as I was since homeschooling didn’t exist back then for me, then the only way out is through. So, I knew I had to suck all that up…. A 12-year long gauntlet to run…. Rather than Amos and Miles and Henry coming to Auggie’s rescue, in my school experience, the opposite would have occurred. With very rare exception, everyone would have joined the Nazi camp guard ringleader. Again, the book isn’t that realistic, in my experience. And my family of origin had their own share of dysfunction, so my parents were not in any way as supportive of me as Auggie’s were to him in the book. Most parents aren’t that supportive, as evidenced by the large number of Chinese babies with birth defects abandoned in orphanages. If we’re defective and our parents can get away with dumping us, they often will. This is not a condemnation, just a fact. And my older brother, much more so than Via, was jealous of the extra attention I got due to my nevus and my, unfortunately, failed surgeries. Like Via, my parents did not give my older brother enough attention; and as a result, he and I still have a conflicted, tempestuous relationship, now going on for 56 years. My older brother would never come to my rescue in school or anywhere else. In fact, he was one of my persecutors. My father was moderately abusive, especially emotionally, to my older brother, so my older brother passed that trauma on to me by persecuting me, understandably. What we don’t give back, we pass on. Notice to parents: do not neglect your healthy children, or you will create lifelong enmity between siblings. Do not show any kind of favoritism to your children, or you will guarantee discord between siblings long after you are gone, discord that is usually lifelong.

Nowadays, it is well known that children with differences should have a “show ‘n tell” by way of introduction to a new setting, but the author Palacio apparently isn’t aware of that. Poor Auggie should never have been thrown into a new school with 500 kids and no introduction. His sister Via should also have a brief “show ‘n tell” about her brother whenever it is appropriate, such as when she didn’t want Auggie to be seen by any of her classmates at her new school. One way to do that, if the clueless parents insist on groupschooling, would be to show a couple photos of Auggie in each homeroom, and maybe add one with his dog, to personalize him. There should be a brief explanation what he has medically, ie, something similar to Treacher-Collins Syndrome, mention the 27 surgeries and painful convalescences, and emphasize that this doesn’t hurt, at least for the most part, and most especially, isn’t contagious. Everybody, including all the teachers, should get a good, long, closeup look at Auggie’s face ahead of time, so there will be minimal shock and panic when they finally see him in person on the SECOND day of school. No way should the irresponsible adults in this situation have allowed a ten-year-old child to be so traumatized as Auggie was, facing 500 new people all alone by himself in the book. My mother would sometimes do that same crap to me, forcing me to do things that she herself would be too embarrassed to do. Now, it is human nature to stare at the unusual because it is part of our instinct for self-preservation. If a saber-toothed tiger jumped through our door right now, we better take a quick, piercing stare at it and then run away in a panic or get ready to do battle if we don’t want to get eaten alive. With people like Auggie and myself, once the initial shock is over, and people find out that what we have isn’t contagious, then they settle down quicker, and we don’t have to take so many panicky stares, look-aways, header-benders, dropped open mouths, etc. AboutFace www.aboutface.org recommends the Explain-Reassure-Distract technique to be used when meeting new people. Auggie should be taught to Explain he has a birth defect similar to Treacher-Collins syndrome, to Reassure others that it isn’t contagious, and to Distract them by changing the subject to the class project, the latest movie, whatever, if/when he is tired of talking about his face. www.treachercollins.org will have lots of good, coping ideas, too. We also recommend carrying “business” cards, which explain our unique situation in a few simple terms, when one is not in the mood to provide endless explanations to other people about one’s situation. There are almost 7 billion humans on earth, and one simply can’t spend one’s entire life educating them all on our particular situation, so quickly handing out an explanatory card is often helpful. And unlike Auggie, I didn’t get any awards in school. In fact, just the opposite happened. I remember two classmates telling me in 8th grade that they thought the principal gave me much harder words than anyone else in the spelling bee on purpose. Of course, I flubbed up and was out, which is what the Principal wanted. He probably didn’t want the “speckled freak/ Catlicker/dumb Pollak/nerd” representing HIS school! At least, that was my conjecture, not being inside his head.

In my opinion, Via should never have been allowed to have a boyfriend so early, at age 15. As a minimum, she should have been told to be much more discreet, avoiding long kisses in public, etc. No one should be having long kisses in public anyway…. Those PDA’s are just a form of bragging and one-upping others…. And why were her parents letting her boyfriend spend time with her in her BEDROOM? Don't her parents know what bedrooms are for? Do they want her to have a baby or get an STD by age 16??? I hope she has had her HPV vaccine! Via’s mom is worried about her taking the subway alone at age 15, but not about her spending time alone in her bedroom with her boyfriend! Crazy, I know…. Obviously, parents have no common sense nowadays. Their JOB is to set reasonable limits. Such as no dating before age 17, which is a more reasonable age. And NEVER a boy in her bedroom… Why start on the sexual gerbil wheel so early? These parents flubbed up badly. Relations between the sexes are always conflicted and stressful, even at best, so why not stay relationally sober until age 17-18 or even longer? I didn’t start dating until I was 19, and now, I am glad I waited. So many people my age in their 50-60’s have a slew of past sex partners along with all the diseases that go along with that, and 3-4 ex-husbands or ex-wives to boot! And all the pain and sorrow of all those break-ups. It adds up to a lifetime full of avoidable sadness. I only have one ex-husband plus a couple ex-boyfriends. So delaying participation in the relationship battleground turned out to be a blessing in disguise. Why start the high of a new boyfriend coupled with the near-inevitable low of breaking up later on at such a young age? Why climb on that sexual gerbil wheel so early, always searching desperately for the next partner to avoid being alone? Why not wait a couple years and enjoy being a teen longer? Sex is highly overrated anyway, especially for women, mainly due, I think, to a woman's hormones being only 1/10 as powerful as a man's. And imagine how poor Auggie might feel, she so beautiful with such a handsome ”cool” boyfriend while Auggie is, in real life, being ostracized, bullied, and with just about nil chances for a girlfriend at that stage of life. Later on, yes, but then, no. The longer that kind of sibling rivalry is delayed, the better. My brothers were nerdy for different reasons from mine, so they didn’t have girlfriends and the issue never arose for me. And I didn’t have a sister, for which I am very, very thankful, imagining my sister wearing all kinds of cute clothes that I couldn’t wear. I have to “cover.” Even if I was willing to “show” the remnants of my nevus and my scars left me with paper-thin skin too thin to function bare. My skin needs the protection of clothes for padding.

Another thing that bugs me about this book, Auggie has almost no external ears, but he does have 2 eyes, so why does the cover portray a boy with one eye, oversized, unequal ears, and a blank face? Didn’t the cover illustrator Tad Carpenter even bother to read the book before doing the illustration? Maybe blank faces are “easier” for “normal” humans to deal with than real but misshapen (to others) ones like Auggie’s? That is totally weird! “Normal” people are clueless! Because kids with Treacher-Collins are really quite cute, especially those teeny, little T-C ears? They are much cuter than regular ears! And that irresistible face is really quite adorable! As Confucious, a Chinese guy known by his Latin name, said, “Everything has its beauty, but not everyone sees it.” Yet at one point in the book Auggie mentions that what he has is “worse than you can imagine,” or something similar to that. Well, of course, that is totally false! That’s only what the author actually felt. Auggie’s appearance is “normal,” for him. And why does Auggie’s condition remain nameless in the book? Is his condition actually so terrible it cannot be drawn on the cover or named inside the pages? Maybe only if we are still living in the Dark Ages! What is the purpose of hiding? Why the shame? There’s nothing shameful here except the author’s revelation of her true feelings: SHE’s the one who feels that what Auggie has is too awful to name or show….SHE’s the one who feels his face has to be hidden, to be blanked out… We’re only as sick as our secrets, after all…. If Auggie had a Treacher-Collins variant, then why not show a cute drawing of someone similar to that? Not this blank face! Do you ever see T-C people walking around? Granted, it’s rare, but most spend a lot of time hiding at home because they get worn out dealing with human nutcases every time they take a step outside the house. This book could have helped release those people from their self-imposed prison. Others seeing them would think, “Oh, that person looks like Auggie!” What an incredible educational opportunity that was totally missed! Sad, really. And there really are children born with one eye, but they are either stillborn or die shortly after birth, as that severe level of facial/brain maldevelopment isn’t compatible with life.

We human beings are fallible—all of us, including myself. No one can be depended on, 100%. We all let each other down, at one time or another, including us letting ourselves down. And for each of us, physically different or not, there is an existential aloneness. Each one of us, whether we admit it or not, is truly alone. When I realized that, I could soften my desperate desire for friends/relationships at any and all costs, overcome my co-dependence and minimize my people-pleasing. I can say my truth, even when my truth is unpopular. One truth that I have upheld, for example, in spite of intense pressure, is the reality that surgery, at present, often doesn’t help those of us with truly giant nevi. We simply don’t have enough normal skin to expand by today’s techniques to give “passing” results. Period. I have been vilified relentlessly for stating that fact. I remember one nevus mother told me that she “wanted to kill me” (her exact words—nevus parents often transfer/displace their anger at their kid onto a more socially acceptable target like a nevus adult—the person she probably really wanted to kill was her own son for being born defective) when I told her that present-day surgery wouldn’t help her toddler son, as he had a huge torso nevus and lots of satellites and no normal skin…. Skin expander surgery works best, by the way, on those with smallish giant nevi nevi, like say 1/3 of the back, no sats, and lots of normal skin for expansion. Yikes, hearing her say that she wanted to kill me sent a shiver down my spine! Good thing she lived in another state. Well, she went on to put her son through 30-40 surgeries, maybe more. He spent his whole childhood being knifed in search of an elusive “cure,” instead of spending it being a kid and learning how to cope with a nevus he was stuck with anyway. He was left scarred and traumatized, developed PTSD, Post-Traumatic Stress Disorder, became suicidal, and ran away at age 16. One wonders if the 30-40 anesthetic exposures has caused some mild brain damage, on top of everything else? I happened to speak to her shortly after he ran away, and she told me, “Now I understand why you said surgery wouldn’t help him, but back then, I simply refused to hear it. I wanted so desperately to believe the doctors were telling the truth when they said they could help him, and I just couldn’t believe they would lie to me. But they did.” “Well,” I said, “It’s always good policy to follow the money trail. I’m not making money off nevus kids, just the opposite in fact, and many others are. Telling people what they want to hear is a money-maker. Telling an unpalatable truth isn’t. Let’s kill the messenger if we don’t like the message.” But as Ayn Rand said, “We can ignore reality, but we can’t ignore the consequences of reality.” Later I said to this nevus mom, “Why don’t you turn this negative situation into something positive? Why don’t you write up your story and we’ll put it in the newsletter and on the website?” “Maybe you’ll be able to help prevent this in someone else?” She said she would, but I’m still waiting for her story, ten years later!

One thing that I never would have imagined would happen when we started the Nevus Network 29 years ago was that so many people would make money off nevus kids with all these endless, repetitive surgeries that often give unsatisfactory results and all these repetitive MRI’s that often aren’t needed. I just never thought that we nevus kids would turn into someone’s cash cow…..And I never thought that nevus parents would try the same surgical techniques over and over that didn’t work well on someone similar and express disappointment when the same thing happened to their child. Duh! “Insanity is doing the same thing over and over and expecting different results,” which is one of my favorite quotes, this one from Albert Einstein. If very few nevus kids/adults are “showing” the results of their plastic surgery at nevus get-togethers, or sharing photos of themselves in skimpy swim attire, you can be sure the surgery was a bust.

I remember another nevus parent, the father of a newborn girl, who started reading the info on the website. He got so upset when he thought his daughter might not be “cured” that he punched a wall so hard he broke his hand! I felt really badly for him. In fact, his daughter’s nevus was small enough that it was actually removable, even though that’s not a true “cure.” He over-reacted before he’d even finished reading. Most nevus parents never take the 4-6 hours needed to carefully read every single word on the website, which is incredible to me, and then badmouth the website….A good example of the phrase “contempt prior to investigation”….. I spent YEARS searching for nevus info, especially in the days before the internet, and these parents are too busy to spend 4 hours….Strange…. Removal, as we now know, is not a complete cure, because one can get melanoma in the scar or in the brain even after apparent complete skin removal. Still, what a difference between this father and my own parents. My parents were told I might possibly DIE, and they just accepted that possibility and moved on in life with equanimity. C’est la vie. No big deal. No drama on their part, regarding my nevus. They had other dysfunction, of course. However, one of the reasons I feel I coped as well as I did with my nevus is because it wasn’t a big deal to my parents. They had the attitude “Don’t sweat the small stuff, and it’s all small stuff!” If they had been falling apart over my nevus and desperate to “get rid of” it, that would have made it much harder on me because it would have given me two problems: 1. learning to cope with my nevus/scars/possible early death and 2. learning to handle parents who didn’t find me acceptable to them and were basket cases over it. Can you imagine how that little girl whose father broke his hand over her nevus might feel? Perhaps something like “Geez, my nevus was so awful that Dad totally lost it. That must mean I’m awful, too.” In any case, complete removal of my nevus wasn’t even a remote possibility since it was so giant. Too many parents make huge mountains out of small molehills now. Everything is drama, which makes it even harder for us nevus kids to cope with our nevus. If that unfortunate father had had better emotional sobriety, he might have saved himself a broken hand, and been better able to help his daughter cope. The high rate of depression and suicidal thoughts among our nevus kids might be related to the increased difficulty our parents have in accepting our nevus. It is really unfortunate that too much time and effort and money are misplaced on attempts to “get rid of” an inoperable nevus, and not enough on learning to cope with it, something which is a lot more useful in the long run. I feel the one essential for nevus kids and their families is counseling.

Anyway, regarding this book, we must realize that we cannot depend on fallible human beings to be there when we need them. Because quite often, they aren’t. No need to get depressed or suicidal over something that simply is. Acceptance of what is and cannot be changed is the solution to my problems. We cannot depend on friends in foul weather. They may be there. They may not. And I am here to say that having lots of friends while growing up is not necessary. They are nice, they sure are pleasant; but they are not essential. I managed to survive my groupschooling torture without a single friend. Oh, a person here and there who would tolerate me for a while, thank goodness, but not one single, dependable friend from 5th grade on thru 12th that I could truly trust. Granted, I was a “new girl” again in 8th grade, 5 school changes in 12 years due to my family’s dysfunction, so by 8th grade the “cliques” were set thru high school and I wasn’t a part of any of them. I ended up being an outcast until I finished school. How, then, does a person survive? Surrounded by all these fallible human beings, who are sometimes there for me when the going is easy, but drop me when the going gets tough, how do I survive? Who is there to sustain me? Who can I depend on all the time, not just when things are easy? Myself. Coupled with a Power greater than myself, a Higher Power, an Intelligent Creator, a Divine Force, a Great Spirit, whatever term works for you. With a Power greater than myself and a few of my fellows now and again sent as “guardian angels,” I can survive and even prosper.

All in all, this is a rather poorly written book, conveying shame about a straight-forward physical condition, unrealistically optimistic, and with way too much dependence placed on other people being there to meet our needs, which usually doesn’t happen. Ok, I’ll give the author an “A” for effort, and the topic an “A,” as birth defects and chronic illnesses aren’t often the subject of books. But it is really unfortunate that the author simply didn’t have and didn’t obtain the first-hand knowledge of the subject needed to write a truly helpful book for those with facial anomalies and other congenital defects. Maybe it is almost inevitable that those of us with first-hand knowledge don’t publish books? Maybe writing a book is something too emotionally searing for us to do? Can you imagine a person with a facial difference dealing with all the stares while attending book signings and all the other things an author has to do to promote a book? Eeewww! It would probably be too much for us….I think…. Maybe I could do it when I was quite old….. retired, even….. Maybe not… BJ, age 56, BTN with 1000 sats

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