©Nevus Network

The Congenital Nevus Support Group



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, whose initials stand for Raquel Jaramillo, 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. I have to wonder why a person without any personal experience would have enough hubris, false pride, arrogance, whatever, to presume she is qualified to write an entire book on a subject of which she is unfamiliar! This boggles my mind….Nothing about us without us!

Homeschooling is Better: In the book, August’s mother, who is his homeschooling teacher, decides that it is a good idea for Auggie to attend large group schooling, rather than continue the homeschooling he has so far done. Big mistake! HUGE!! Large 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, group schooling 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 wasted 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….

Stress is Cumulative: Sometimes I wonder why parents throw their young, enthusiastic, 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 will be like at age 50, under the burden of years of stress and pressure. We forget, but life is truly a marathon, after all…..

Negative Socialization: In addition to the negative hypercompetitiveness, the “socialization” in large group schooling 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 large group school situations agonize over one zit or one misstep, wondering if they will be toppled from their high social 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. Large group schooling 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.

Large Schools are Dangerous: Large group schooling situations are dangerous. Kids do get murdered in large group schools, especially the very large ones and especially with many school shooters on psychiatric drugs which increase the risk of suicide and homicide. 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 large group schooling 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 large group schools will be the return of the one-room schoolhouse. Large group schools 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 walking 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!

My Personal Experience: 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 was “physically challenged” and looked different from everyone else in my class. 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. 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 down at a 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. However, 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, almost 50 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 or more. 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 in third grade, I was only 8 years old. I had an excuse. The adults didn’t. As I say, adults are clueless.

No Added Weirdness, please: 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! As I’ve mentioned, I never had another kid go to bat for me like Jack did punching Julian out after Julian called Auggie a freak. In fact, “speakled freak” was my nickname in high school because of my bathing suit nevus with about a thousand satellites. Everyone called me that behind my back, although thankfully not too often to my face. I learned to suck it all up, but I deal with some of that childhood pain even today, of course, and even with counseling and recovery…. If one is in a large group schooling 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 it all up…. A 12-year long gauntlet of large group schooling 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 Chinese orphanages. If we’re defective and our parents can get away with dumping us, they sometimes 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 with 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 can’t give back, we pass on. What we can’t give back (to our perpetrators, usually our parents), we pass on (to new victims, usually our children).Notice to parents: do not neglect your healthy children in favor of the unusual one, 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. Get counseling and get into recovery so you don’t pass your dysfunction down to your children.

Show ‘n Tell Needed: 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 large group schooling, would be to show a couple photos of Auggie in each homeroom on the first day, and maybe add one with his dog, to personalize him, or perhaps a photo of another person with a facial difference, so he’s not alone. There should be a brief explanation of 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, close up look at Auggie’s face in the photo 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 peers all ALONE by himself in the book. My mother would sometimes do that same crap with me, forcing me to do things alone that she herself would have been too embarrassed to do.

Coping with Staring: 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. The organization 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 more than 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 nerdy “freak” representing HIS school! At least, that was my conjecture, not being inside his head.

Coping with Bullying: As a person with a bathing trunk nevus and 1000 very visible satellites and no knowledge of anti-bullying coping skills, I was bullied during all twelve of my school years. Bullying is common, but not inevitable, as there are many nevus kids who have seldom been bullied. What I didn’t know as a child is that this world is full of bullies because it’s full of traumatized adults and children. Traumatized humans prey on people who are too timid to fight back. So just about everyone, if not everyone, is bullied at one time or another to a greater or lesser degree. People with greater emotional health who don’t have a deep emptiness inside, an unfillable “hole in the soul,” don’t need to bully as much because they are more comfortable in their own skin. Anyone who ridicules is really saying, “I’m badly traumatized and hurting, so I’m lashing out at others.” A bullier is essentially crying for help. I was taught to be “nice,” so I was an easy target for bullies. And I had a lot of other social strikes against me, besides the giant nevus. I was a brainy nerd, the smartest kid in the class. I wore glasses and had short, thick, curly hair during an era when long, straight hair was fashionable. We were poor, and my bathing trunk goes to my knees, so I was always out of fashion and I couldn’t wear the mini-skirts and hot-pants popular at the time anyway. I was a Polish-American Catholic living in a rural German Protestant area during the era when “dumb Polack” jokes were common and my classmates gleefully recited them to me often. I didn’t realize it then, but even the media was and still occasionally acts like a bully! . And I moved schools FIVE times, so I was often the new girl. I was definitely at the bottom of the social pecking order, along with a couple other misfits. But someone’s going to be at the bottom, why not me? Someone’s going to have a giant nevus. This could have happened to anyone, since it is a genetic glitch that occurs in the 3rd month of pregnancy, so why not to me? Everyone gets bullied, at least somewhat, so why not me? I learned to change all the “why me’s?” to “why not me’s?” And some of the other misfits were even bullied more than I was. Slowly through experience, I learned to combat bullying. First off, I learned to “tease-proof” myself. Tease-proofing involves learning to ignore what others think of me, reacting to the teasing with courage, never showing fear even if I’m shaking in my boots, and responding with a comeback, often a one-liner. Bullies should be avoided when possible and confronted when not. I’ve learned I can sometimes help people stop their bullying by embracing it, magnifying it, and deflecting the magnified bullying back onto the bulliers. When my classmates told me a “dumb Polack” joke or called me a “dumb Polack,” which was often, I should have responded by calling them “Nazi Krauts,” or “Brutal Bloody Brits,” or countered with whatever defect they had. No one is perfect, and it’s fairly easy to spot someone’s Achilles heel. Magnifying and deflecting the bullying back is sometimes an excellent anti-bullying technique. There is no single best way to respond to bullying and sometimes one has to use trial-and-error. Countering bullying means developing the ability to survive—even thrive—without family or friends. After all, the only person I will never leave or lose is myself, as long as I stay connected to a positive spiritual force. When I feel good about myself, it’s much easier to counteract bullying. And with various tactics, I can sometimes overcome the bullying and perhaps even nudge a bully a bit closer to seeking recovery for their own hidden trauma.

Relational Sobriety: 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, mostly her brother…. And why were her parents letting her boyfriend spend time with her in her BEDROOM? 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. And NEVER a boy in her bedroom… So 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 3-4 ex-husbands or ex-wives, and I only have one ex-husband plus a couple ex-boyfriends. So delaying participation in the relationship wars 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 a short while later on at such a young age? Why climb on that gerbil wheel so early? 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.

Hiding Reinforces Shame: 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 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 rediculous! 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 secrecy and 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? Almost never…. Granted, it’s a rare syndrome, 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, their voluntary house arrest. 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 birth-defectivechildren 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, so why illustrate it on the cover? The illustrator is as clueless as the author!

Healthify instead of sickify: In the book, Auggie has undergone 27 reconstructive surgeries. I know nothing about T-C Syndrome variants, but 27 surgeries is a LOT of surgeries regardless! And a lot of general anesthesia, which is known to cause transient and possibly permanent brain changes. Clearly those brain changes aren’t good for anyone! Whether all those surgeries would actually be needed for kids like Auggie is debatable, I’m sure. Nevus kids often have as many or more surgeries. And most of the time, the nevus surgeries aren’t necessary. Endless surgeries, endless contact with the medical establishment in my opinion gradually “sickifies” a person rather than “healthifying” them. With the trauma of the surgery, voluntarily asking to be knifed and stabbed, infections, scars, adverse effects from the treatments, missing school, bandages, pill-taking, seeing oneself as abnormal in need of fixing, a person over time loses the conviction that their body is a pretty reliable machine that mostly fixes itself. They have become sickified instead of healthified.

And unfortunately, most of the time, nevus surgeries aren’t even all that effective. Some nevus surgeries are necessary, such as those with cancer, open sores, large nodules, nevi enlarging over time, and several other indications. Smaller nevi can be easily removed, and I am glad my relatively small facial satellite was removed. If a nevus can be reasonably easily surgerized with minimal side effects, why not? All those warrant surgery. For the most part, though, truly giant nevi are nonremoveable with present surgical technique. One replaces a really giant nevus with equally bad scars and other side effects. Just go to a nevus get-together and see how many surgerized giant nevus people are “showing” off their surgerized skin. Very few… Why? Because the results are suboptimal and the scars are often just as unsightly or even more so than the nevus. I don’t “show” mine because the skin is too thin to be functional without protection from clothing, and it is beautiful in its own way, but unsightly in others. So…. let me get this straight…. As a person with a bathing trunk, I’m supposed to let myself be knifed and stabbed just to please other people who don’t count a fig anyway, and then be able to tell them I was burned instead of telling them I was born with this genetic glitch? Yes, that’s it, and I bought into that malarkey as a teenager. I often lied about my scars with the “burned” excuse. I didn’t know any better at the time. When we know better, we do better.

Some of the adverse side effects from surgery are horrendous. We have nevus kids who can’t shut their eyes properly after nevus surgery. Can you imagine the burden of having to tape your eye shut every night over a lifetime, just to try to please other mostly unimportant humans? And if you go on a campout and forget your tape, then what? You don’t want to have a scratched, abraded painful eye that you cannot see out of the next morning…. We’ve recently had a case of facial nevus surgery that left residual nerve damage causing drooling Eeeck…. Can you imagine carrying a towel around with you forever to sop up drool over a LIFETIME? Carrying a bottle of water everywhere to replace the lost fluid? Sleeping on a towel and waking up to find it out of place and your pillow wet and icky? What a disaster…Facial nevus people have to “show” whenever they are out of the house or out of a protected environment. But they are “normalized” in their house. Surgerized facial nevus people who drool are never normal anywhere, including in their house, because they have to sop drool 24/7. The goal is to have as much time as possible “normal.” We’ve had foot amputations from attempted excision of extremity nevi…. OK, people, a bit of poopy-looking skin on the leg is NOT worth being a cripple over a life time in my opinion. We’ve had people with scars over shins, over knees, on the sole of the foot, all friction/pressure point areas where scars should be avoided at all costs. The person with the scars on the sole of the foot is unable to take long hikes… What a lifelong loss for no benefit…They have been sickified instead of healthified. In my case, I have scars over my vertebra and my entire back from failed nevus surgery trying to “lower” my bathing trunk using skin grafts. The skin is so thin I can dig a hole in myself just by pressing my back too hard against something. Usually it is the car seat while driving in heavy traffic for hours and then feeling a trickle of blood down my back. I recently rigged up a pad to wear on long-distance drives that “plumps”up my back on both sides of the vertebra and takes the pressure off the vertebra. I also had to rig up padding on my lower back because the seams on jeans can dig into my very thin fragile intact nevus located there and abrade me. The big tough seams on blue jeans are particularly troublesome. Corduroy is somewhat softer and almost as durable, but even corduroy seams are uncomfortable. Surgeons are so clueless that they leave scars in places that should never have scars. I get constant irritation on my scars located along the bra band and near bra hooks. Even tiny friction can abrade scars. But again, most surgeons have no personal experience, and most aren’t open minded and willing to learn from those who do. My surgeon has passed, my mom has passed, and I am here still dealing with the adverse side effects from my useless nevus surgery of 58 years ago…. Sad… and sad that so many young nevus people are in my same boat today.

I remember one nevus mom who told me she wanted to kill me after I told her that no one with her son’s nevus had had successful removal so far. I felt a stab of fear and was really glad she lived in another state! Her son had a huge torso nevus with many satellites. Well, she put him thru 30-40 surgeries, which were unsuccessful naturally. He developed PTSD, made several suicide attempts and ran away from home at age 16. She told me afterward that she finally realized why I told her what I did. “I hated you for telling me that and I wanted to kill you, but now I know what you meant. I wanted so badly to believe the doctors when they told me they could help him and I just couldn’t imagine that they would lie to me, but they did.” I said, “I’m sorry, so sorry for you and especially your son. I’m not making money off this and they are. That’s the difference.”

MRI’s: MRI’s are a hot topic among nevus people. Again, I think they are overrated in asymptomatic people as they help to sickify us instead of healthify us. Let’s not forget the anesthesia risk with some of them, too. If they are normal, it doesn’t mean much of anything because they could, at a very low rate, become abnormal next week, five years from now or 50 years from now. If they are abnormal and the person doesn’t have symptoms, then the added burden of walking around with a possible time bomb inside the head about to explode at any moment is stressful. The research info gained IMO does not mitigate the extra added stress to us nevus people. Anyone with complications usually has ample time to seek treatment because symptoms such as headache, vomiting, feeling off balance, etc will increase unceasingly. Eventually after throwing up 10-12 times or more with a worsening headache, one starts thinking that this isn’t just a really bad stomach flu but maybe something more serious and I need to get checked out. I’ve never had an MRI and don’t plan to as long as I stay symptom-free. And I am self-pay for medical care, and they are exorbitantly expensive. MRI’s don’t have enough bang for the buck for me to waste my own money buying one. Besides, MRI’s and unneeded nevus surgeries deplete scarce resources even further on a planet already suffering from resource depletion, environmental degradation, and population overshoot. Why add to that toxic stew? Live simply so others may simply live is one of my mottos. A couple years back I had a headache that lasted about 3 weeks. I never get headaches, and if I had had an MRI showing lesions, I would have really freaked out! But since nevus cells come from the same place as brain cells in the developing baby, called neuroectodermal cells, I just assume ALL of us nevus people have nevus cells in the brain. Well, I put that headache on the back burner and waited. It stayed the same then eventually it went away. What caused it? Who knows? But I practiced healthifying myself. If it is steadily getting worse and worse and worse, I need to get it checked out. If it is staying the same, I wait and observe. If it goes away, which it did, I fagetaboutit!

Regarding nevus surgeries, we had another nevus kid whose father smashed his fist into a wall and broke his hand, which is really sad, after he was reading our website information and thought that his daughter’s nevus was unremoveable. Well, it so happened that this child had a relatively small back nevus, maybe a third of the back, and that size is actually removeable reasonably successfully. Check here to see whether your nevus falls into the removeable categories or not. Can you imagine being a kid and finding out your old man broke his hand because he did not find you acceptable to him, just as you were? That’s a heavy burden for a child to carry. “I’m not good enough the way I am. I need ‘fixing.’” It is so sad this father immediately jumped to conclusions and hurt himself before reading onward. I’m amazed that nevus people won’t take 3-4 hours to read the entire website www.nevusnetwork.org word for word. I spent hours and hours ferreting out information in the days before the internet. One time I spent 40 hours in one week in a medical library looking things up! And I’m thankful that my parents stopped sickifying me after my 5 failed surgeries and put my nevus where it should stay most of the time, simmering on a back burner, not a big deal. They made mistakes, but I actually think they did better than many contemporary parents do today. Because my parents weren’t anxious and afraid for me, or at least they never showed it, I never felt anxious about my health. My dad told me at age 3 that my skin could kill me, and I remember it vividly. But they accepted it very matter-of-factly and so I did, too. Even though the sword of Damocles was always hanging above my head, I never obsessed about it, and neither did they. Que sera, sera. Whatever will be, will be. Since we hardly ever went to the doctor, I learned to avoid making medical molehills into mountains. We were self-pay for medical care and I think that helped my parents make better decisions on when to run to the doctor and when to wait, which was most of the time. Most health care is self-care, anyway. Years later, I learned that the mortality rate, surprisingly, decreases during a doctor strike! This is because people take better care of themselves when they know no medical care is available so they get sick less, and because the sometimes mortal side effects from surgery, treatments, and medicines drop during a strike when no medical care is being provided . And the possibility of an early death became a “motivator for intensified living” for me. I’ve tried to pack in a lot of life in the years I’ve lived. I’ve had lots of interesting jobs, got married, cured myself of matrimania after my ex-husband punched me once too many, got divorced, traveled all sorts of places, climbed the Eiffel Tower, sat in front of the Taj Mahal, biked all 8 bike paths in San Francisco, drove the Blue Ridge Parkway from one end to the other, had some stupendous scuba dives, learned all kinds of interesting things, and met all types of interesting people. Overall, I’ve really had a fantastic life! Probably better than a “normal”person. And if you have a nevus, with rare exception, you can, too!

Racism. I once asked my mom why she put me through 5 major surgeries when she could see after the first one to two that they were making me worse. She never answered my question. My dad was against my surgeries, but he unfortunately lost the fight over them to my mom. Now, many years later, I think I know why my mom traumatized me with 5 useless surgeries. And why I would have traumatized myself. Why? Because…… I am now finally able to admit it…. I am a racist! Yes, little old me, who tries to be kind and “nice” to everyone, I’m as racist as everyone else. And how could I not be, growing up in a society where I am told that white is right, white is clean, light is happy, and light is joyful. I’m told to look on the “bright” side, walk in the “sunlight” of the spirit. I was never told to look on the “dark” side, walk in the “moonlight” of the soul. A bright sunny day, not a dark, dreary day. Courageous in the light, fearful in the dark. Light is warm, dark is cold. How could I not become racist, along with everyone else, with that viewpoint? And that means everyone, as I’ve known extremely dark-skinned people whose nevus I can barely distinguish from their “normal” skin, completely emotionally distraught unless they can “get rid of it.”

And nevi often are almost black at birth and then usually lighten to a beautiful cocoa. But that is a reframing in action, because to society, it’s not chocolate and cocoa, it’s poop! Well no one wants to be thought of being splattered in poop, so of course, we all want to “get rid of it.” No wonder I was hiding on the back steps behind the porch at age 14 after stealing sandpaper from my dad and trying to “sand” away the satellites with their long tufts of hair on my legs. Classmates would stare at my legs and I was so embarrassed about it. I drew blood from my sanding and the area scabbed over and then the satellite reappeared unchanged, so I stopped my home “dermabrasion.” And I did this even after I had had 3 failed dermabrasions of my thighs, with pigment and scars reappearing, so I already knew dermabrasion didn’t work! But I was desperate, like so many nevus families I’ve known over the last 35 years And like them, I tried to re-invent the wheel. To my credit, however, I was only 14 when retrying something already proven to be a failure, not an adult.

Fortunately, over the years, I’ve been able to make the mindshift of realizing that both the bright, sunny day and the dark, rainy day are equal in benefit. The light sunny day and the dark starry night are equal. Humans can’t live without either one of them. Try going to sleep in an endless bright sunlight sometime! Imagine if there was no night, just a flood of light 24/7. It would be impossible to live long like that. So light skin is ok, and so is dark skin, and so is everything in between. Because of this mindshift, I’ve made great progress in overcoming my innate racism. Perhaps you can, too! And to possibly answer the question that my mom never answered, she probably put me through 5 useless surgeries because of her own innate racism. Very understandable…. I can’t really blame her….It takes willingness and openness and honesty to face our own individual racism. Many will find it too painful.

I can become my own Best Friend: 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. 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 essential. They are icing on the cake, but they are not the cake. I managed to survive my large group schooling torture without a single friend. Let me repeat that for the many who have no friends in school right now: You don’t need friends to survive school! I survived 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 1st 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. I don’t need to grovel to others in order to desperately try to avoid abandonment. The only person I will never lose or leave is myself, as long as I stay spiritually connected to something greater. . A recent study found that about 1/3 of Americans admitted to having no friends at all. Since being friendless is shameful, I would guess the real number might be close to 2/3rds. The older one gets, the less open others are to friendship, and the harder it is to get and keep good friends. Rather than desperately seeking “friends” and desperately trying to avoid abandonment, I need to concentrate on my own personal development. "Vaut mieux être seul que mal accompagné" is a beautiful French saying that means it’s better to be alone than badly accompanied. I can embrace soloism, and become comfortable with me, myself, and I! Two (or more) is actually the loneliest number because loneliness in a group is far worse than when solitary. I can be alone and not lonely. I can be open and receptive to others, but maintain good boundaries against inappropriate behavior and set reasonable limits. I can truly become my own best friend!

Nothing About Us Without Us! 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. The rest of it gets a flunking grade! 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. Apparently, it never occurred to her to contact the T-C Foundation to find a real, live T-C co-author…. Since the book was so bad, I didn’t bother seeing the movie, but why couldn’t the producers have found a real, life T-C kid to play Auggie, for goodness sakes? The very handsome child who played Auggie wears a facial prosthesis and makeup. Say, what?! Obviously that kid can never truly act the part…. He’s going to make mistakes due to ignorance of the real-life situation. Maybe it is almost inevitable that those of us with first-hand knowledge don’t often publish books or star in movies… Maybe writing a book or starring in a movie 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? Or a child actor with T-C promoting a movie? 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… Regardless, nothing about us without us!

BJ, age 56, bathing trunk nevus with 1000 satellites, 5 failed major surgeries, 2 successful minor surgeries, 2013. Updated 2018, now age 61 1/2!

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