INK Georgiana Bruce Kirby Preparatory School Volume VIII, Issue 8 June 8, 2012 NEXT to NORMAL en agers en ty te nic n tw a chro ne i with O t de als o n tha s o nditi tivitie ss, a c asic ac illne the b nearly t urns day into . You h y of eac ible tasks m. Stor im poss ree of the h ow t 4. kn ge a on p Page 2 Opinions as they battle evil in a last ditch effort The plot, if you can call it one, revolves around with moving light sources and to save humanity. The heroes, Iron Man around a fundamental premise: the world shifting, complex patterns that draw the (Robert Downey, Jr.), Captain America is in danger and the heroes have to save eye and stimulate the mind. The real 3D (Chris Evans), Thor (Chris Hemsworth), the day. There is little tension through the gives Whedon free range inside his world Review Hawkeye (Jeremy Renner), Black Widow movie. Most of the action, while visually to dazzle viewers and plunge them deep (Scarlett Johansson), and the Hulk (Mark stunning, lacks the psychological weight of into the hectic, ill-explained world of the A Ruffalo, who replaced Edward Norton and thinking that the heroes might be in dan- Avengers. Eric Bana as Bruce Banner) are recruit- ger. They get pummeled, they get smashed, A great deal of the dialogue is funny. ed by Nick Fury (Samuel L. Jackson) to they get blown up, and dropped out of orbit. Said Whedon in an interview with Rolling S.H.I.E.L.D, (Strategic Hazard Interven- But they always get back up—you know Stone: “You better know how to be funny Comical tion Espionage Logistics Directorate) after they will, it’s a given. It’s expected. Fur- if you want to save the world.” The plot is an attack by demigod Loki (Tom Hud- thermore, the villain—Loki, the outcast, held up and propelled by a series of one- dleston) on a government facility contain- bastard brother of Thor—is uncompelling liners and deadpan diatribes from the mar- ing the Tesseract, a cosmic cube containing and generally bland. Through the course of velous cast. Instant classics include Tony Attempt practically unlimited power. Unfortunate- the movie, he never really poses a threat to Stark’s response to the question, “What are ly, the only way to know anything about the heroes, serving as a mere speed bump you without the suit?” the blue cube of destiny is to sit down and in their defense of humanity. “Genius, billionaire, playboy, philan- try to stomach the Thor and Captain Amer- Although it has been almost seven years thropist.” ica films, which are far outshone by the since the release of Serenity, the film that Whedon views the Avengers as a the Iron Man blockbusters and Hulk movies. wrapped up Whedon’s smash TV hit Fire- ultimate dysfunctional family. A great One flaw in the writing of The Avengers fly, Whedon still focuses on a few essential portion of the dialogue is dedicated to the is that it assumes the viewer has seen the design elements: clever, humorous dia- verbal sparring of Stark and Banner, two Re- A Lot of FX previous movies; it spends no time on plot logue, a motley cast of rag-tag heroes, and geniuses, one with a taser, the other re- exposition or character development. The flashy special effects. With Firefly it was pressing a hulking titan of abject violence Avengers is basically a climactic fight to Malcolm, Zoe, Wash, and Jayne; with The and destruction. “I’m a great fan of your But Not Very wrap up the unfinished business from six other movies. Avengers it’s Captain America, Tony Stark, and Thor, who, in a characteristic moment work, especially how you turn into a big ugly rage monster,” says Stark, shaking For that reason, it’s easy to get bored of reflection, noted just “how puny” his Banner’s hand. Special with the almost flatlined story and plot; to combat this, Whedon brings the full force human companions were. Whedon uses a wide range of subtle light effects in his The Hulk offers moviegoers with sim- plistic, but entertaining humor: punching of 3D to bear, stunning audiences with work to create a dazzlingly beautiful land- Thor, shouting incoherently, and of course, fantastic images and breathtaking special scape in which his dysfunctional heroes can rudely interrupting Loki’s maniacal mono- effects. do what they do best, SMASH! The Aveng- logue to use the arch-vil- by Gabe Moss In 2D, however, the action seems mun- dane, and you start to notice the fundamen- ers gives him the perfect opportunity to ex- plore lighting and visual effects, lain as a pseudo drumstick. tal flaw with big budget super movies: a with three shining supers Whedon has bare-minimum plotline, practically no (Iron Man, Thor, and come a long way character develop- ment, and Captain Ameri- since his Firefly 1 little-to-no story explana- ca), he can play series, but in the 43 minutes. 143 minutes packed full tion. essentials, he hasn’t of action, violence, and breathtak- altered. His work still fo- ing cinematographic effects. 143 cuses heavily on humor minutes stuffed to bursting with super he- and flashy effects. In The roes, aliens, and Samuel L. Jackson. 143 Avengers he uses well- minutes of poorly developed plot and written dialogue and clever unexplained melodrama. 143 minutes remarks to disguise the lack stitched together by CGI and witty of a well-developed plot dialogue. In 143 minutes Joss Whedon and low-key conflict. His delivers up a jaw-dropping, but cliched, implementation of 3D as super hero action flick that has already a medium for viewing grossed over $457 million in box office. is almost unparalleled. Shot in real 3D, the pictures jump off the But it’s safe to say screen, enthralling the viewer. that this film is best The film follows the story of six gifted viewed on the big individuals, well, four gifted, pluss an screen and in 3D. angry, green, rage machine, and a god, I t was the first time my cousin really and buttery. It wasn’t the horror story he told that Amanda blushed, giggled, flat out saw Santa Cruz. She wasn’t used to I blurted, “I found your pizza, man.” was funny, but the prima donna way he started laughing. street bums mumbling at her. I was. “Really—where?” His voice sound- carried himself, gesticulating, giggling, “Thanks,” she managed to say. Amanda had been in town for four ed a few octaves too high for his street- lips drawn in a serene smile. I put an arm around her and turned hours, and we were walking down Pa- worn figure, stuffed into ripped jeans “Hey, you!” A group of shirtless away. We walked towards the intersec- cific Ave. at 10:00 pm. and jacket, no shirt, chest hair creeping surfer kids got the yell-at treatment this tion a few feet and glanced back. The “Max!” Aaron yelled my name from through the zipper. time. “Party until you’re homeless!” real Richard Palmer was riding away, a ways up the sidewalk, inside the en- “Uh…yeah, we found it!” Amanda He didn’t speak again until another laughing at us. trance to the Coffee Roasting Company. couldn’t look at me without laughing, group of kids came out of the New Leaf I lifted him in a bear hug and turned so I stared at the ground, then back at and over the crosswalk, onto the corner to Amanda. “This is my buddy, Aaron. Richard. where we stood. L’essai Aaron, this is my cousin from back “You guys like poison; you want “You too! You’re already partying, East, Amanda.” some poison?” Smiling broadly, he di- but party ‘til you’re homeless!” “Oh, this is your cousin.” rected the question just above my hat. A I asked the obvious, “Is that what you Aaron waved, then shook her hand. short Asian girl and a bearded guy in a did, man?” “Cool. Dude, have you seen this guy, UCSC shirt, holding hands, walked by. He giggled, finally looking at me Richard Palmer? He’s some homeless Richard hailed them: “Hey! You—“ with a wide, glassy stare. “Yeah, I, like, guy with a huge jug telling people it’s They avoided him, keeping up their took off from my step-dad’s place. And poison. Super crazy guy, go talk to him. chatter. “You want some poison, don’t I had, like, twelve grams of meth stuck Tell him you found his pizza.” you?” up my nose, and I didn’t even know it Broken Amanda, a full seven years older “No.” was there.” He snorted and slapped the than I am, giggled at our boyish behav- “Oh, come on, man; it’s only really air. “I was high for, like, three days and ior. lemonade.” His gaze focused back at the just had the most fun I’ve ever had.” “Alright, sounds sweet, dude. space above me. “Some people, man. Amanda stopped laughing. I looked Ribs Where is he?” I was already a few steps I’m just messing around. Like, look, I down, shifted my weight. down the sidewalk. even have my protective charm against “So do you want some poison? “Just down a bit.” mean people.” Richard’s dirty fingers ’Cause I’m going to live with my real Amanda caught up; we kept walking. tugged at a dream catcher, duck-taped dad and all these Indians, ‘cause I’m, I glanced at every guy slumped along to the handlebars of the old bike. like, part Native-American, and I can’t the pavement. A man with a baseball “It totally sucks too ‘cause, like, take this whole thing with me.” cap pulled down to his bushy eyebrows, some people are crazy. Like, some crazy He pointed at a five-gallon plastic saliva foaming at his lips, passed out guy just, like, stole my last two bowls tub near us. I only noticed it then, filled drunk, a bed sheet wrapped around him of weed, and it’s 4/20 today, and I’m, with yellow liquid. Lemonade, maybe; like a shroud. Two others—one tooth- like, so pissed off. Who would do that? maybe piss. less and one balding despite his thick Ya know?” Amanda almost sounded genuine beard—argued over the last drops of a Amanda laughed, drawing Richard’s when she turned the offer down. “No, bottle of beer, cigarette ashes floating attention at the space between her and thanks, though. We don’t have a way to on the liquid surface. me. carry it.” “I see him!” I pointed at a man lean- ing over the handlebars of a worn, “And I just found out that my dad’s not my real dad. Which is good ‘cause “Oh, ok, then. Well…my name’s Richard Palmer. And I’m the real Rich- by Max Saalisi fixed-gear bicycle. I totally hated him. He was, like, so ard Palmer. Like, people will try to say Richard Palmer stood, one leg on a mean. He broke my jaw.” His dirty that they’re me, but I’m the real me.” bike pedal. He sported a fish–hook ear- hands prodded his brown cheek. “And “I’ll keep that in mind. I’m Max, this ring, dangling from his matte of hair three of my ribs twice and used to touch is Amanda.” just past his shoulder, a feather impaled me and all this messed up shit. He, like, Gazing directly at my cousin: “I’ve on the end. totally tried to throw me out of a win- seen you somewhere before. I remem- We locked eyes; his were big, brown, dow once.” ber your aura. You’re very beautiful.” Features Page 3 marching band, wind ensemble, chorus, and jazz band. singing.” Twenty-six men showed for the meeting and By JJ Anderson As a senior he performed in the school musical Pirates of when club members complained about the “noise,” the Penzance, where he played the guilt-ridden Major Gener- group found a new location. By the next week they had I ’m not the official welcoming committee.” Joe, a al. Johnson did not sing seriously again until 2007 when seventy members. The group became the Barbershop grandfatherly looking man with a crisp mustache, he joined the local Gold Standard Barbershop Chorus. Harmony Society, now with 30,000 members, smiles and extends a hand. The music room at Santa Organized shortly after the 1989 earthquake, the chorus and officially named the SPEBSQSA, in the Cruz High School is filled with two dozen members of participates in local performances and district compe- style of Roosevelt’s alphabet legislation, the Gold Standard Barbershop Chorus, chat- titions. Every year on Valentine’s Day the (Society for The Preservation and En- ting, stretching, reserving seats for their group peforms singing val- couragement of Barber Shop Quartet seven o’clock Wednesday night practice. entines. Singing in America). The name holds Musical Lara, a smiling tenor, pulls a binder of bar- to this day. bershop songs from under a folding table in “The other major event which the corner; spread on the tabletop is a leather I’ve started doing is, there’s an or- suitcase containing practice CDs: “Polecats ganization called the Harmony Bri- gade-Extreme Quartetting.” John- Mathematician Tenor,” “Kentucky Bass.” Two dollars. “Here, so you can follow along.” Lara son leans forward for emphasis. passes the binder; the songs are arranged in “Once you’re signed up, they ship alphabetical order. “Feel free to sit with the out a packet of ten or twelve songs choir. You’ll be able to hear the music better. and a learning CD. Then everybody You can sit by Dan; he has a great ear.” gets together for one weekend in At the front of the room sits a piano and “We’re just going around northern Santa Reno. On the first night at dinner, they foot-high stool. Whiteboards cover the wall be- Cruz and walking into places where people randomly assign you to three other people. So you get hind, scribbles of notes and scales occupy ev- work and singing to them. It’s always cool put in a completely random quartet. And assign you one ery inch. The room is the shape of a rounded when you go into an office and you start singing of the ten or twelve songs, and you have an hour to go baseball diamond. The front is the narrowest the first song and people’s heads start poking out back to your hotel room and rehearse the song, and you part; wide curved steps gain in elevation at the back of doorways over cubical walls and everybody kind of come back and compete. I got to direct two of the song- of the room. Plastic chairs line the steps. All but an el- listens, and by the second song you have a pretty big -it’s the biggest chorus I’ve ever got to direct, which derly couple rise to begin stretches. audience.” Johnson smiles. “Probably the best recipient was fun. After that they take the final top ten, same ten “Arms up, reach for the sky, 1,2,3.” Laura stands I ever had was at a tattoo parlor. We got a call while we twelve songs, but this time they draw the name out of a on the stool and directs. “Good. Let’s try something new: were eating lunch, and it was to deliver a singing valen- hat right before you go on stage. It’s pretty intense, but ten pants, ten blows, ten whistles.” A hush falls over the tine gram to a tattoo artist. We walked in--four people in a really fun weekend. When you’re not competing, you room as the group exhales in unified rhythm. After more tuxedos walking into a tattoo parlor. And she looked at get together; you hit on voice combinations that are re- warm-ups, Laura steps down. Chorus director Jordan us quite puzzled, set down her tattooing implements and ally got those are the one that really make it worthwhile. Johnson takes the stool. The fluorescent lights reflect in stopped working on the guy she was working on, and we The chorus begins a new song. his glasses. A grin spreads the width of his goatee. sang her the songs and she really liked it.” You know everybody, “Let’s sing the old songs.” With part of the chorus, Johnson competes in And they all know you, Though Barbershop music can trace its roots to a quartet named Constellation, which took fourth place in And even the policeman say ,“How do you do. the monasteries in medieval Europe, the form of quartet the Northwest Division of the Barbershop Harmony Far Johnson sways back and forth, waving his arms singing we see today was born in the southern United Western District contest held in Woodside, California, in with the tempo. States in the late 1800s. African American men, waiting April, and qualified to compete at the Far Western Dis- “Think nothing about going lower think about go- and socializing outside barbershops, began singing and trict contest to be held in Mesa, Arizona, in October. ing wider” Johnson spreads his lips for emphasis. experimenting with different harmonies. As the style of The first organization of Barbershop music oc- “A little higher . . . let’s take that stanza from the singing became more wide spread, and with the inven- curred in Tulsa, Oklahoma, on April 11, 1938 when top again . . .” tion of Tomas Edison’s phonograph in 1877, Barbershop Owen Clifton Cash invited 14 friends to sing on the They sing the line again. music reached the main stream by the end of the century. roof of the Tulsa Club restaurant. In the letter to his “Bingo,” says Dan under his breath. “A friend of mine kind of recruited me to sing.” guests, Cash wrote, “In this age of dictators and gov- “Good; that’s the best sound I’ve heard all night.” Johnson sits upright in his desk chair, hands in his lap, ernment control of everything, about the only privilege Johnson smiles with his hands on his hips. fingers laced. “He was in a barbershop quartet with his guaranteed [is] by the Bill of Rights. Without doubt we “Give yourselves a hand,” says Dan. parents. They were just doing it for fun at one of the still have the right of ‘peaceable assembly,’ which I am Everyone applauds. school meetings.” In high school, Johnson participated in advised by competent legal authority includes quartet The Bagel recorded, but organized. We’ve done pretty well, seeing as by Devin Riley our singer is our producer.” By November they had set up a show the Communi- C ome on, baby, have a dance,” shouts senior Brian Hemmert. “He kicks the tissues to the wall / While Tea Room, a local teahouse affectionately known as the Chai Cart. “The first show that I felt confident in was at Also Rises waiting patient’s laughing / when he hears the tissues the Chai Cart,” says Kalow. “I was never really confident fall.” Decked out in black pants, a green flannel shirt, and in us getting shows consistently to begin with, so after that a black fedora with a feather, Hemmert pivots back and it was cool.” forth, microphone in hand as he performs on stage in the The band’s distinctive stage persona emerged at this atrium of the Catalyst. His band, Otis and the Fascist Ba- show. “[It] was kind of a joke. For the first show, we de- gels, surround him, moving about the stage as they play cided to dress as different kinds of hipsters,” says Kalow. the band’s much adored song. Otis and the Fascist Bagels “I was a flannel hipster. I don’t know what Matt was—he A group of about 30 fans stand below the stage in a had something funky on. Brian was the classy hipster, and semi-circle. They have been waiting here since 8:00 pm make it to The Catalyst Rory was the punk hipster. It was all really silly.” to see their favorite band play Santa Cruz’ most renowned Hemmert recalls his own style within the band: “The music venue. fedora has just become a thing. I always wear a hat, but complete. I remember when we wrote ‘Radio Song’ I A few weeks later, junior Joel Kalow sits relaxed in a it’s not too hip to wear a baseball cap. So the fedora was thought ‘This is actually cool.’” chair on the Kirby deck, his eyes flickering up from his born.” Each band member credits different influences, all cen- iPhone to answer a question. In the ensuing months, they began picking up speed, tered on a mutual love for the Velvet Underground. Kalow laughs, his eyes closing briefly as he recalls playing a benefit show for the non-profit group Grind Out “They’re my favorite band of all time,” says Kalow. the story behind the band’s name. “All right, so Matt was Hunger, shows in San Francisco, and several more shows His eyes widen with enthusiasm. “Brian really likes them, with his friend Jen, and they were outside of The Bagelry. at the Communi-Tea Room. as does Matt. Rory likes them, but not as much as we do. Matt was like, ‘I really want to get a pizza bagel right Then in early March, they were presented with an We’re obsessed!” He laughs. now, and they didn’t have any pizza bagels. And Matt was opportunity to play at the Catalyst. “It must have been “It really changed throughout being a band and writing like, ‘Those fascist bagels!’ That’s how we got The Fascist a month before hand,” reminisces Kalow. “At the time songs. It started as a folk-rock thing, but we realized very Bagels, and we put together Otis and the Fascist Bagels, I thought I was going to be visiting colleges, and I was soon that wasn’t our sound. After that, influences have named after the great constellation in the sky. Otis repre- going to be gone. I told Brian that and we thought we gone from Sonic Youth to Pavement and Weezer. I mean, sents all the stars.” couldn’t do it. We didn’t really think about it until a week it’s really gone around. This new song I wrote reminds me The band’s origins go back to the summer of 2010 before, when I realized I could do the show, and we im- of this Walkmen song. Any band I’m listening to, I adapt when Hemmert and band members Matt Nitzberg and mediately got super stoked and prepped everything for it.” and write a song off it. Joel Kalow were in a folk group called The Sex Offend- The show’s program was established: Otis would open “It’s Lou Reed, Bob Dylan, and Julian Casablancas,” ers. “Matt really wanted to start a band,” says Joel. “It for their friends Transoceana, who would in turn open for says Hemmert. “In terms of harmonica, Bruce Springs- was his idea completely. We take no credit. He talked to a bigger local act, Proper Nonsense. However, through a teen, Neil Young, and John Popper pretty much sum it up.” me and Brian. We started jamming, nothing really serious, random error in communication, it was Otis’ name that The band began rehearsing with Freeman full time late because I was in a band at the time called Amphigory.” was put on the Catalyst upcoming shows board and was last spring. They played a friend’s graduation party and “I started playing more with them,” says Kalow. “Matt advertised on the Catalyst website. made an appearance on local public access television. knew Rory [Freeman] from another band he was in. We The band currently spends its time alternating between “Our first show was on TV,” says Kalow, “featuring our were looking for a drummer for the longest time, and we recording new material in the Kirby studio and playing only ever rendition of ‘Yellow Submarine’ with yours finally auditioned Rory, and we knew immediately that the remaining shows they have booked before Hemmert truly on vocals.” he was going to work well for us. So we asked him if leaves for Oberlin College in Ohio at the end of summer. “Pretty much from late spring throughout the summer, he wanted to be in it. He said, ‘Yes, of course.’ We’re “One song’s new. One’s not,” says Kalow. “I hope to re- after Matt got back from CSSSA, up through November it awesome, amazing, probably just brilliant songwriters.” cord two songs before the summer starts. I don’t think was just practicing and recording,” says Kalow. “That was Kalow chuckles to emphasize the sarcasm. we’re going to do the whole demo thing [again] because before we had any [real] shows. We wrote ‘Radio Song,’ The band began to write and play music, but Kalow that was too stressful. Getting shows and playing shows ‘Wine of the Minstrels,’ ‘Otis’—a few of those songs that and Hemmert claim there were no specific plans early on. is way more communal than I thought. There’s just a lot we still play now. The classics. What we call ‘the early “I’m not sure if we ever had a specific goal in mind,” of bands who want to play with each other, which is cool.” essentials’ now.” He grins. “We hate all of them, except says Hemmert, “aside from impressing girls, of course. It The band plans a farewell show at The Crepe Place on for ‘Radio Song.’” really just started with playing ‘House of the Rising Sun’ June 27. Do they have any special plans for their swan It was around this time the band began recording a and took off from there.” song? four-track demo. Hemmert was in an audio engineering “Right around the time Amphigory broke up,” says “Strippers and cakes?” mock-asks Kalow. He chuck- independent study project. “I never hoped for us to have Kalow. “I knew [Otis] was something more”— he inter- les again. “That’s really all I can go for. One stripper and this overproduced feeling,” says Kalow, “not that we had rupts himself—“a little before that actually. I guess when multiple cakes.” that option to begin with. I wanted to get our live sound we started writing songs and we had Rory and we were Page 4 Features “I ’m Graden Golston-Kreyche for the 3:45 appointment.” The walls are painted beige, and the smell of antiseptic hangs in the air. Graden and his parents sit in the wooden chairs lining the walls, holding the letter they had received the previous day, the letter that would begin a parade of pre- scription drugs and blood tests, missed school, and doctor’s appointments. A nurse appears from behind the counter, her hair bobbing, and leads the family--appre- hensive, hopeful--to the examination room. Nonchalantly, she checks his mouth, eyes, nose, temperature, blood pressure, ears, lungs. The white paper that covers the exam table crinkles every time Graden shifts. As quickly as she appeared, the nurse fades away into the white walls, only to be replaced by Dr. Culver in a starched white shirt. He leans over the test results, showing his bald spot, and re- peats what he wrote in the letter. Graden has been diagnosed with systemic lupus erythematosus. There is no fixed procedure. There is no cure. NEXT Lupus is a chronic, autoimmune disease that can damage any part of the body. Normally, your im- mune system produces proteins called antibodies that protect the body from invaders, but in lupus, the immune system can’t tell the difference between these foreign pathogens and your own body. Consequently, it creates autoantibodies that attack and destroy healthy tissue, causing inflammation, NORMA L pain, and damage in various parts of to t h e body. More than 90% of people with lupus are women, 85% develop symptoms after eighteen, and around 67% are nonwhite, so Graden is a very unusual case, being a sixteen-year-old, white male. Ironically, Graden never got sick before his diagnosis. He would go a year between colds and never had anything more serious. Still, his mother worried. He slept more than other children. He by Ry Faraola, never had a lot of energy. She took him to see the doctor, but the tests showed nothing abnormal, nothing until he woke up the day after receiving his hepatitis vaccine with every joint in his body swollen beyond movement. Zoe Gregozek, Enlarged joints are only one symptom in an exhaustive list, including extreme fatigue, head- aches, anemia, photo-sensitivity, hair loss, abnormal blood clotting, mouth/nose ulcers, organ Acacia Lommen- damage, and a butterfly-shaped rash on the face. Not every patient experiences all these effects; in order to be diagnosed, the patient must satisfy only four out of eleven indicator criteria. This means that two people could have the same illness but experience completely different symptoms. Nelson, Lucy There is no “normal” lupus experience. Nor is there a normal experience with chronic illness, a condition describing a spectrum of Saldavia, and health problems from asthma to cancer. Chronic illness is anything that forces a change in life- style. According to one estimate, over one-third of working aged Americans suffer from at least Adriana Brock one chronic condition, and by the year 2020, it is estimated that 157 million Americans will con- tract a chronic illness. And within that segment is a smaller subset. Among adolescents, persons aged 10-18 years of age, chronic illnesses occur among six percent of the population. This is the statistic that makes parents pause. We’re all mortal, we all expect to contract an ill- ness at some time, to visit the hospital more than once, and eventually to pass on. As hard as the thought is, parents expect to face a serious illness sooner or later while their kids grow into old age themselves. But the illness of a child, in the words of poet Karl Shapiro, “cancels our physics with a sneer.” It beggars reason. It feels like a violation. It forces our lives onto a side road with a different destination. “Adolescence,” writes Lawrence S. Neinstein, a professor of pediatrics and medicine, “includes a period of accelerated physical growth, the development of secondary sexual characteristics, and acceleration in cognitive and psychosocial development. As a result, the management of teens with a chronic illness must go beyond the strictly medical; it should include addressing issues such as development, family and social support, substance use, and reproductive health.” In other words, for teens, a chronic illness is only part of the problem. The additional complications of adolescence--making friends, establishing an identity, dealing with puberty, planning for adult responsibilities--add a discomfiting twist. What teens with a chronic illness contend with is being different, finding their lives, and their futures, circumscribed by factors they did not choose, trying to convey to others why activities that seem normal to most--reading a book, getting to school on time, taking a trip, eating a French fry--are difficult and, on occasion, impossible. Whether, like Brianna James-Beckham, it is a con- dition they have known all their lives, or, like Connor Cockerham, it creeps into their world before exploding on a late winter day, they find they have crossed a threshold. They have been changed. Some embrace this change, but others, like Graden, strive to erase their differences: “I wouldn’t want my peers to treat me differently, maybe even unconsciously,” he says. His long hair pulled back into a ponytail, subtly blue eyes peering at you from beneath wireless glasses, Graden speaks softly in measured words. “I don’t even really want people to be more understanding. I want to be normal.” Features Page 5 Page 6 F Features or Brianna James-Beckham, there was no “before.” stop that and try another one.’ “ Medications are often frustrating for lupus patients because no two cases of the disease are alike. “When a doctor says, ‘You have lupus.’ they’re not like, ‘Here, take this.’ “ Graden says. “They’re like, ‘Here Brianna has lived her entire life under the shadow of Alagille syndrome, a rare genetic disorder. take some medicines; they’re all kinda different and they all have different side effects.’ ” Laura is a certified family medicine doctor, but, ironically, it was small comfort understanding the medical details of In patients with Alagille syndrome (AGS), the liver doesn’t build enough ducts to transport bile her daughter’s illness. She spent hours in the medical library, hunched over big books with small print and long words. Like April, she went online, sifting through pages of unreliable information to find small nuggets of fact. Without the to the gallbladder. Bile is a fluid that carries waste and toxins out of the liver and also aids in the ab- medical background that Laura had, Brianna’s father Ed found the news difficult to process. Scientists have identified the mutation in the Jagged1 (JAG1) gene and can test for it. But in 1994, the year Brianna sorption of fats and fat-soluble vitamins. When bile ducts are absent or malformed, a build-up in the was born, little was known about Alagille. What was known was not encouraging. Most early studies were performed liver causes scarring and severe damage. Alagille Syndrome doesn’t just affect the liver, though—it on children who had not been treated from birth, as Brianna was. Ed remembers reading terrifying facts and statistics: two-year survival rate, possible transplant, high chance of brain damage from lack of nutrients. can damage nearly every organ in the body, including the heart, skeleton, eyes, and kidneys. Brianna Brianna was placed on a special diet, consisting of Pregestimil and Nutramigen (formulas designed for babies with malabsorption), and medium chain triglyceride (MTC) oil. Every two hours, Laura stumbled out of bed to feed her received her diagnosis when she was seven weeks old. infant daughter the foul smelling concoction. The two substances would separate every few minutes, and Laura would shake the baby bottle vigorously until they emulsified. Feedings took a long time because Brianna was so weak. She Like Lupus, Alagille syndrome is difficult to diagnose. It closely resembles other forms of liver disease seen in was sunken-eyed, skinny, starving, and there was little her parents could do. young children and infants. Friends and families of children with serious illnesses often feel helpless in the face of something so monumental “We knew there was a problem probably four days after her birth,” remembers Brianna’s mother, Laura. “Initially and scary. Many do not know what to do or how to react. Telling other people can be difficult, particularly for teenag- there were feeding issues, she was jaundiced—a lot of babies are jaundiced, but her jaundice was prolonged—and ers. They don’t want to be seen as “different,” and they don’t want to cause a fuss. she developed failure to thrive, meaning she wasn’t gaining weight, she was losing weight.” Jaundice, a yellowing of Telling his loved ones, especially boyfriend Craig Petrocelli, was tough for Connor. “I mean, there’s no easy way the skin and whites of the eyes, results from high amounts of the pigment bilirubin in the blood, which gives bile its to say it,” says Connor. “The best way to describe it is, it’s like you’re coming out of the closet, but you’re coming out reddish-yellow color. Jaundice is often a sign of liver problems. While it’s normal for babies to be jaundiced temporar- with cancer. Except no one’s really proud of you; they’re more worried and sympathetic.” ily due to immature livers, prolonged jaundice indicates serious problems. “I don’t usually tell people, unless it comes up somehow, which it usually doesn’t,” says Graden. “I wouldn’t mind Brianna’s symptoms could have pointed to other liver problems. What worried her parents more was that she had if everybody knew, but it’s kind of an awkward conversation.” developed a heart murmur, the most common sign of AGS after liver disease. She visited a cardiologist and underwent For Connor’s friends, the news was a blow. “The last thing I wanted to do was freak out,” says Analise. “And he an array of tests. And then more tests. None of the doctors could come to a conclusion. Meanwhile, baby Brianna kept saying ‘I’m going to freak out in a minute,’ but then he didn’t. was hospitalized and fed through a tube. But due to her faltering liver, she couldn’t absorb the nutrients any better than “I remember he said, ‘It’s weird to think I have cancer.’ There wasn’t that fear of ‘I’m going to die’ as much as it when she had been breastfeeding. She was literally starving to death. was ‘I have a disease that could kill me. This is something that’s going to change my life.’” “It was really hard. That was a very dark time for us,” says Laura. She was not optimistic. “There were two things For most high schoolers, doctor’s appointments and shots are minor hassles to be endured once or twice a year, that my baby could have, and neither one had a very good prognosis: Alagille syndrome, to the extent of the liver in- friends and homework come before health, and something as small as a bad hair day can make you feel self-conscious. volvement that she was showing, and the other, most common hepatic disorder, biliary atresia. Biliary atresia, almost For children and teenagers with chronic diseases, however, this life is alien. Living with a serious illness changes your all of those babies have a [liver] transplant. There’s a procedure called a Kasai that can be done, but if you do it to the idea of “normal.” AGS baby by mistake, you’ve really messed up the prognosis for that child. But biliary atresia, if you don’t either do Before her liver transplant, Brianna’s days were dominated by “the fog.” What is the fog? “Let’s just say your this procedure or a transplant by two months, biliary atresia babies don’t survive.” thoughts come from the back of your head to the front. It was like there was a wall right there.” Brianna points to her More tests. Doctors examined her heart, her lungs, and scanned various organs. They tested for a urinary tract forehead. “Everything was just pushing against this wall. And I could not get it to the front of my head so I could see infection. Clean. Biliary atresia was looking more and more unlikely, so doctors focused on identifying AGS. Sure my world and understand what I was reading and comprehend it. I would read a textbook, and I could read that textbook enough, Brianna had many of the characteristic AGS symptoms: eye abnormalities, heart murmur, unusually shaped chapter three times, and you could quiz me on it, and I would not know anything. I just could not retain the information. bones. A liver biopsy provided the final confirmation. It was like a wall in my brain, and now, after the transplant, the wall is gone. It’s like my brain is smooooth.” Brianna grew up aware of her illness. For her, it was a normal part of life, something she had always dealt with. For Brianna, an average day went something like this: “You wake up, and you’re tired. You have the fog. You Unlike Graden, her life was not split cleanly into “before” and “after.” have to take tons of medicine. You have to go to school, and you look different. You’re super itchy, and it never “I just figured out that I looked different, I looked yellow, y’know?” explains Brianna. “I don’t know when it be- goes away. And you’re just suuuuper tired.” came something I noticed.” Many children born with a chronic illness explain being almost thankful they don’t have Everyday activities that most people take for granted can impact a sensitive disease. Brianna and Graden to experience the shock of first learning their diagnosis. They don’t have to go through the pain of adjusting to a new both encounter problems in the sunlight and have to limit their participation in physical activity. Stress can also reality, and the fear and uncertainty that evolves when they realize something is wrong. put strain on the body and mind, especially for Graden. “I definitely have less flare-ups over the summer when For Connor Cockerham, that realization dawned slowly. I’m not stressed out. It’s great! I found a cure for lupus: not going to school!” For eighteen years, it was just a birthmark. Connor never gave it much thought. Because it wasn’t very noticeable, Brianna has always known about her Alagille syndrome, but because it isn’t a well-known condition, people and because parents and friends and doctors assured him it was normal, he didn’t worry about it. Dark reddish-brown often commented on her appearance, especially when she was an infant. Strangers pointed out her jaundiced and about the size of a coin, it hid just above his left ear, covered by hair. Even when it started to itch, Connor wasn’t appearance, making observations or expressing their fear, offering advice, asking questions. Laura appreciated unduly concerned. By his senior year of high school, however, it had begun to hurt. It grew, changed shape, and be- their concerns, but the unwanted attention got a bit wearing. “The strangers are the ones you can really make fun came raised. When he scratched it, it bled. of,” she says mischievously. “You can really lead them along. ‘Oh my god, you really think she’s jaundiced? “He showed it to me and he said ‘Analise, it’s hurting,’ “ recalled junior Analise Pappastergiou, Connor’s best friend. Really? I never noticed!’ It lets [me and Brianna] get some humor out of it.” “I was like, ‘When was the last time you got that checked out? You should get that checked out.’ And he agreed.” At school, the other kids could hardly fail to notice Brianna’s appearance. “Throughout elementary school I Connor arrived at the dermatologist in a state of nervous expectation, reminding himself that his birthmark had been was in denial. I think it was maybe around seventh grade, eighth grade that I started accepting I had a problem. examined before and results had always been the same: normal. After a stressful couple of minutes searching for his I didn’t want to be different. I had this image of myself: I was like a normal person, and I looked like everybody missing insurance card, he settled into an uncomfortable chair, waiting to be called for his examination. else. Whenever I went to the doctors, it was shoved in my face. When I was away from the doctor, with my He was led into a stark, white room that smelled of antiseptic. The physician’s assistant snapped on a pair of latex- friends, I could be that image that I wanted to be. It got so bad that I would not want to look in mirrors because free doctor’s gloves (“I’m allergic,” explains Connor “so they had to use nitrile gloves on me the whole time.”) and it would point out how different I looked. So I started hating mirrors. I just thought I was ugly, really different.” pushed aside Connor’s hair. He touched the area gently, pushing the skin together and moving it around to examine the Eventually, Brianna began to accept herself. But she wasn’t ready to share something so personal with texture. Connor shifted nervously on the thin white paper of the examining table as the assistant took notes. Finally, people she didn’t know. It was hard to answer the relentless questions. She patiently fielded queries about her the assistant looked up. He was hesitant to make a concrete statement, but there was a very real possibility that Connor yellow eyes, her frequent bloody noses, her itch. One day in seventh grade, she snapped. Fed up with the con- had malignant melanoma, a fast-moving and virulent skin cancer. stant questions of a classmate, she turned around in her seat and snapped “My eyes are yellow because I spray Two weeks later, Tracy Cockerham blasted Madonna as she drove her son in their white Audi up to Stanford. Con- paint them that way.” Her classmate looked at her in awe--and bought every word. nor was about to undergo a punch biopsy of the birthmark to test the tissue for cancerous cells. Getting numbed for the “I was an outcast, I was different from everyone else and my self esteem went down,” Brianna explains. procedure was the worst part, Connor recalls. Connor, too, felt separate from his peers. “Yeah, I did feel isolated; I definitely did, actually.” He felt like his “I could hear the shot going through my skin, and it hurt so bad, and they have to go slow because it was in my old idea of a high school crisis was trivial, less important. “Knowing that it could have spread to my lymph head.” After the numbing, it got easier. “It’s almost like a hole-puncher. I couldn’t feel anything, but I could hear, nodes was the probably the scariest thing. Just the fact that I had cancer, that I’m a cancer survivor now, is like, crunches. It was really gross.” He shudders. “Apparently everyone was really impressed because usually people weird. You never, ever think it’s going to happen to you.” freak out, but I was just chilling and talking about shopping.” Occasionally, clipboard-toting med students wandered Except for the occasional butterfly rash, Graden’s lupus is not immediately noticeable. But like Brianna, he through the room, staring. “You know, it’s a university, so people are learning. I think I was one of their exhibits.” feels its effects every day. He sleeps more than most people his age but still goes through his days in varying Connor laughs. stages of exhaustion. Graden, Brianna, and Connor all had a hard time keeping up with schoolwork, or just After the punch biopsies were sent to the lab, Connor and Tracy could do nothing but wait, and hope. going to school. Each describes Kirby as very accommodating, and the teachers, understanding and discreet. “It was hell waiting for [the test results],” says Analise, “because they had told him what it could be, that it could be People with chronic illnesses describe having a connection with people in similar circumstances. Graden melanoma, and if it is you’ll have to get surgery and possibly chemo. You’ll have to get your lymph nodes tested, and enjoyed meeting others with lupus. “A lot of people don’t understand what some people that live with any if it’s spread, you’ll have to get full chemo. So they were supposed to call within about three days, and they didn’t call. chronic condition would probably understand, so it’s nice to meet those people,” he says. “They’ll be like, ‘Oh Everyone was just freaking out waiting for these calls. It took, like, seven or eight days. During the waiting period we yes, I know it’s hard.’ I went to a lupus support group for a while. Those people were really nice.” talked about what would happen if he had cancer and what would happen if he didn’t. It was hard for him because I Brianna has attended Alagille syndrome conferences multiple times. “It was wonderful,” she smiles as think there was definitely a feeling of people getting nervous around him [when they found out], because it got around she remembers. “I now call them my brothers and sisters, my true family. We’re basically the same, we walk fairly quickly. And he missed a lot of school anyway because he was so busy with all his appointments.” the same, we look the same, and we’re the same. I can be myself, I can be free, and I don’t have to be afraid.” Waiting for a diagnosis is one of the most stressful times for a family with a sick child. “It was kind of a roller coast- er,” recalls Brianna’s father Ed. “She’s gonna be okay, she’s not okay, she’s gonna be okay, she’s not okay.” For both B Brianna and Graden, a diagnosis was difficult to come by. Very little was known about AGS and Lupus. Melanoma, on the other hand, is fairly common. The number of people diagnosed with the disease has increased by 40 percent in the past few decades, though it is uncommon among young children and teens. Or at least, it was. The number of teens efore the sun had come up on March 9th, 2012, Craig, Tracy, and Connor were on the road to with melanoma is on the rise, according to the Nationwide Children’s Hospital in Columbus, Ohio. Other studies have found similar trends in both the U.S. and Europe. Stanford. Craig and Connor had stayed up late together, shaving Connor’s hair into a mohawk One agonizing week later, Tracy received a phone call. Melanoma. She broke the news to Connor when he arrived home with Analise for a sleepover. for surgery. Reactions to a diagnosis vary. Many children or family members go through denial, anger, guilt, or shock. It some- times takes months to adjust to a diagnosis. On the ride over Highway 17, a Harry Potter audiobook played on the car stereo. “Jim Dale [the nar- “I remember crying, and . . .,” Connor trails off, troubled. “I have weird memories of that night. I think that it was so stressful that I’ve blocked some of it out, you know? I think I was in shock, and then it hit in a kind of wave of rator] is great; it was really soothing,” says Connor, who was worried about being nauseated by the emotion.” anesthetics. “I spent a lot of time trying to do some negotiating first,” says Laura of the period immediately following Brianna’s At the hospital Connor received his white patient wristband, and the trio sat and waited for admission. They watched diagnosis. “This is past denial: denial happened the first two weeks. This is where you go ‘Okay, it’s gonna be AGS. as Connor’s name appeared on a color-coded patient screen. He was orange: “Checked in.” She doesn’t need an immediate surgery, so that’s good.’ This is something that’s supposed to be variable, so then you Three more families checked in before Connor was called to the sterilized, curtained, surgery preparation area. “It start hoping that it’s not as severe as you think. So you’ve got a diagnosis, and one of the advantages of a diagnosis was hard to see him in the surgery gown in the bed,” Craig recalls. “It was actually happening. The anesthesiologist is now you know what the heck you’re dealing with and what you’re going to have to do. Then you do the research.” came in the same time Connor was kind of starting to have a panic attack. He was panicking and crying and really wor- Because there are no specific treatments for lupus, research was frustrating for Graden and his family. “With lupus, ried, and his hands were turning blue, so they told him to sit on them.” there’s just a tremendous amount they don’t know,” explains Graden’s mom, April. “The doctors were very forthright “They had to take slices out of the lymph nodes on of his neck and face,” explains Craig. “And he was really nervous with us about that. They know a certain amount, or at least they believe they know a certain amount, and they have to [get] the lymph nodes [taken] out of his face, because if [the surgeon] hit a facial nerve, half of his face would go drugs that are for other diseases that they now use for lupus. Not to cure it, but to treat the symptoms. And that’s the numb for the rest of his life.” best they have.” April, an engineer, says it’s in her nature to research things. She read books and searched online for Given medicine to calm his nerves, Connor “almost instantly started to calm down; he was basically on drugs,” answers, but always came up frustrated. There simply were no answers. Craig recalls. “He started, like, cracking up laughing, and he told me to take a video of him. And his anesthesiologist “When you have a condition that they know how to fix, it’s really nice.,” says Graden. “There’s diagnosis, there’s was from England. He had an English accent and [Connor] called him Doctor McDreamy. He barely even noticed he treatment, and then you’re better! For me, it’s not that easy. It’s a huge cycle of ‘Does this medication work? No, let’s was leaving us. So at that point they rolled him away. He left.” Features Page 7 Page 8 Features Craig returned to the waiting area with Tracy and waited for Con- mental, because when a doctor says, ‘You have lupus,’ they’re not like, ‘Here, take this.’ They’re like, ‘Here, take some nor’s step-father, Scott, to arrive with Starbucks medicines. They’re all kinda different, and they all have different side effects.’” and pastries. Connor’s color on the screen changed “Everything has been kind of an unknown or an experiment when you stop to think about it,” agrees Laura. “It’s to red: “Surgery.” not ‘Here’s the solution to her problem.’” Brianna has taken part in several experimental tests. Her parents are careful Four hours passed with no updates. Craig be- when choosing what to subject their daughter to, however: “I didn’t want her to be a guinea pig,” says Laura. gan to worry. “The surgery was supposed to take The experimental aspect of treatment can make dealing with a life-threatening illness all the more frustrating. Be- two to three hours,” he says. “At some point--I cause there is no “go-to,” no guaranteed fix, new medicines and treatments invite new rounds of experimentation, along don’t know how much time had passed--there was with benefits and side-effects of their own. Different doctors--even specialists in the same illness--profess different a phone call in the waiting room. The doctor an- views of new and old drugs, increasing uncertainty. swered it, and we didn’t think anything of it [until] Decisions about medications and treatments for Brianna were ongoing and frequently frustrating. At first, her physi- they said, ‘Tracy Cockerham, there’s a call for you,’ cian placed her on double the recommended nutritional supplements, hoping Brianna’s body would increase absorption. so we’re like, ‘This is very bizarre.’ They called to Then Laura flew across the continent to Philadelphia to attend a seminar and discussed the regiment with a specialist. update us and tell us that they were two-thirds of the “He freaked out,” she says. “‘Oh, no, that’s too much calcium. What the heck do you think you’re doing hitting her way done with the surgery and things were going kidneys with all that calcium? What the heck do you think you’re doing out there in California? You guys are nuts.’” great. It ended up being an hour longer.” But four years later, Brianna got a different response. Explains Laura, “At the last lecture we went to in July, he says, After the surgery was completed, a nurse led ‘Oh, and by the way, we’ve all decided that they need to have this much calcium in order to get absorption.’ Wow, four Craig and Tracy to Connor’s curtained corner. years--a whole different tune. I mean, I was lucky. We watched certain values to make sure we weren’t destroying her “We tried to talk to him,” Craig remembers. “It kidneys. But there’s always that risk. I’m making a decision, and I’m risking my kid.” was really hard because Tracy and I couldn’t un- Finally, getting through the simplest of daily activities can wear an adolescent down. derstand anything he was saying. He couldn’t make “I feel [restricted] a lot,” Brianna says. “It’s just sad to look back after a certain point and see all the things I could words, and he was really frustrated and trying to have done that Alagille Syndrome kept me from doing. I couldn’t play any sports because of my enlarged spleen. I communicate with us, but we couldn’t understand. couldn’t play contact sports because of my heart. It was hard in elementary school, too, because since I couldn’t [par- Tracy walked up and took his hand and said, ‘Con- ticipate in PE], my teacher would make me sit on the bench and watch all the other kids play. He finally decided to kind nor, you did so good!’ and he said, ‘Well.’ And we of accommodate me and let me just run around.” were like, ‘What?’ He corrected her grammar, like ‘You did so well.’” After staying the night at Stanford, Connor re- turned home to a comfy couch and a plethora of I t is an early morning in September, 6:20am. Radio music blares. This school year, Brianna aims to be punctual. After too many long years, she has been placed on the liver transplant list, which gives her hope. Breakfast is Cheerios covered in one percent milk because Alagille syndrome makes it hard to absorb fats. Ed hand friends. When Craig left, Analise replaced him. She washes dishes in the sink; Laura steps quietly into the kitchen. was nervous, not knowing how she would react to the Last night, she’d been woken by a call. The clock read 2:30am. “Is Brianna sick?” a voice asked. fresh wound on Connor’s head. Thankfully, though “No, I don’t think so,” Laura replied, tired. Why would anyone want to know? tired, groggy, and incoherent, “he still looked like “Well, we have her transplant, and it will be at Stanford tommorow.” Connor.” She brought movies and TV shows to watch Laura barely slept the rest of the night. At breakfast now, she faces her daughter. with a loopy and sedated Connor. He slowly grew She speaks. “Brianna, we have a surprise for you.” more aware of his surroundings, but the lingering med- Brianna doesn’t know what her mother is talking about. ication from his surgery made him act strangely. He But then she sees her mother’s tears. She understands. Jumping out of the padded chair, she yells “Not today? It sent unintelligible Facebook messages to his friends, can’t be now!” Tears roll down her cheeks, now, too. “It wasn’t supposed to happen so quickly!” Twenty-eight days demanded deviled eggs and Chinese food, and made up a bathroom-themed song to the tune of The Beatles’ “I have passed since the family consulted with the transplant team. Am the Walrus.” Ed drives the James-Beckham family to Stanford later that day. Brianna sits in the back, thumbing through Lizzie “He was moody. Definitely,” admits Analise. “He was really frustrated because I didn’t know the ‘X Files’ theme Gets a Liver, a book Laura bought for Brianna when she was four and the family first considered a transplant. In retro- song. He’s like, ‘Ana, you have to sing the song!’ He made me go on to YouTube, and I found, like, a 20-minute long spect, the book glorified the surgery, simplified it. All too far from the reality Brianna will experience. one, and he made me run it on a loop for hours. And he would fall asleep and I would go to turn it off, and then he’d She is admitted in the afternoon; the liver won’t arrive until that night. The next morning, Brianna is awoken by the wake up and be like ‘I want X Files.’ So I sat there listening to that same song for hours.” anesthesiologist and admitted to surgery at 8am; she will not be released until eight that night. For the rest of a weekend, Connor’s family and friends waited for what turned out to be good news: the cancer hadn’t “I had this feeling something was gonna go wrong,” Brianna recalls. Her premeditation turned out to be correct. spread to his lymph nodes. Before the surgery begins, the doctors, trying to create a central line, fail going from the brachial artery in the upper Though melanoma can return, and Connor’s family will monitor his health, he feels like one of the lucky ones. He is. arm to the subclavian artery because the brachial is too small (a side effect of AGS) and miss the subclavian artery. While he can’t cure his lupus, Graden can use medications to fight the symptoms. “For the prescription drugs,” Brianna begins to bleed internally, her lungs filling with blood. Surgeons insert a test tube to drain it. The emergency Graden explains, “I take Plaquenil at night, and Prednisone in the morning, and then Methyltrexate on Fridays, and I complicates an already difficult operation. The surgeons worry they will not be able to follow through with the process: take Leucovorin every day. All of them are trying to suppress my immune system, which is really annoying, because I because the liver has come from a cadaver, the organ can’t last long outside the body. get sick more often.” “This was no longer science,” one of the surgeons told Laura. “This was art.” Derived from the Peruvian Cinchona Tree, Planquenil was originally an anti-malarial medicine. During the 1960’s, The Stanford cardiologist is called in; he decides to put in a stent to stop the bleeding. it was found to reduce joint pain for Rheumatoid Arthritis and, eventually, Lupus. “He went all the way up through her heart, into the pulmonary, to the subclavian artery, to put the stent in,” Laura “The Methyltrexate was hard in the beginning because I fainted a lot. The first time I fainted, I was at school and it explains. Miraculously, it works, and they proceed with the operation. In total, the transplant takes twelve hours--a full was right at lunch, and as I ran to get into the lunch line, I fell, scraped my knee a little bit. I walked over to the lunch day. line, stood in it for a couple seconds, and then—tunnel vision. And then I fell on the floor. There’s blackness around The operation is a success, but AGS is ongoing, and to prevent her body from rejecting the liver, Brianna will con- the edges, and then it kinda creeps in. I pretty much got right back up. Sometimes teenagers have this thing where your tinue to take immuno-suppressant medications. “Her arteries are small and tortuous in her lungs, kidneys, and extremi- heart and your brain don’t communicate well enough for a while, so your heart lags a little bit behind. I get a hot flash ties,” notes Laura. “She sees a vascular surgeon every three months for her stent--and will eventually need another and really sweaty, so then I’ll just sit down on the floor, because the main problem with fainting is that you’ll fall down procedure (subclavian bypass)--a cardiologist for her heart and lungs (as the pulmonary stenosis can lead to heart com- and hit your head and get a concussion or something. Also, if you faint enough, it will happen more.” plications) every 6-12 months; a nephrologist for her kidneys; the transplant team every month; the gastroenterologist Medications complicate the lives of anyone with a serious illness, but for children and teens, they are a source of once a month; physical therapy every week to recover muscle losses from liver disease and surgery, and her pediatri- endless problems. Pills, shots, chemotherapy, and dialysis just make them feel even less normal. Some teens express cian who coordinates a lot and makes sure that the regular things get taken care of.” their wish to rebel by simply refusing to take their medications. Like Connor, Brianna returns home groggy, but, like Connor, she begins to feel closer to normal. “Before my transplant, I took a whole lot more [medicine],” sighs Brianna. “I took like seven different medicines “I feel new,” she says. “Having a liver transplant was just like being reborn. I learned how to walk again. I was learn- before.” ing how to breathe, through my nose. I’m not scared of getting nosebleeds [anymore].” Graden has gotten used to his regular treatments as well. “I’m pretty good at swallowing pills now! I used to not One side effect of her illness had been a lack of taste. For years, food had been more drudgery than pleasure for be able to swallow pills at all. It’s not that hard once you get used to it. You can practice with, like, mini M&M’s or Brianna, some meals tasting like little more than wet cardboard. But as her taste buds came to life, so did Brianna’s something. I always thought that was a waste though,” he says, grinning, “because you want to taste them.” pleasure in eating. After his surgery, Connor took Vicodin to counter his pain. The two white, oblong pills (500 mg each) were “not “I discovered food was good for the first time in my life. I could never really taste food. Food was something that I pleasant. They made me feel really funny. I didn’t like them. I mean, they really did help with the pain, but I didn’t had to eat and never really tasted good. My first meal was chicken noodle soup, French fries, and a milk shake. It was like the way they make you feel: loopy, and really sleepy.” The lingering effects of his anesthesia were also unpleasant. the first time in my life I drank the entire chocolate milkshake. It was really really good, really creamy. The Stanford He had a hard time remembering things and speaking clearly, and he still has blank spots in his memory of the week Creamery, it’s my favorite place now. I could actually feel the soup melting into my tongue. It was such a weird feeling; after surgery. it was so cool. I can’t even explain how it tasted; it was like the greatest thing I’ve tasted in my entire life...The French Taking pills several times a day can put strain on scheduling and time management. Laura explains, “Your morning fries, there was a whole different dimension of taste to it. Like a flavor, it was like different levels, it was deeper, and it routine is a bit different, I suppose, because it involves medications. I think it wasn’t as disruptive as, say, having to was like, ‘I want more of that.’ It was the best meal I’ve had in my entire life.” do lung treatments and stuff like that. We didn’t have to do that kind of stuff. It was just making sure the medication And there were benefits greater than the satisfying crunch of French fries: “I have more energy,” says Brianna. “I gets taken by the child, and it was morning and evening medication routines. We sort of developed a split—I would have a LOT more energy. Every day I [used to be] be really down, really mellow. But now I’m just like, ‘Woooo.’” take care of morning medications, and [my husband] would do evening medications. And then the injections—I did the injections. Brianna took over doing her own injections when she got older. But your time, any time you’ve got medical D stuff going on, your daily life is . . . different. Planned. You do lose some of that spontaneity.” In addition to pills, Graden has other treatments to deal with. “Every Friday, there’s the shot. It’s really actually co- incidental and amazing that I have two study halls on Fridays, because I can go home afterwards. Pretty much around isneyland bills itself as the Happiest Place on Earth. Superlatives aside, it is a place kids and noon, I’ll start feeling bad. It’s chemo therapy. It’s been two years. And it makes me not want to eat, which is not fun. That’s probably the worst side effect of it. The headache forms later at night. Painkillers don’t really seem to help.” adults forget homework or the New York Times, the cost of a prom dress or the fluctuations Side effects from medications are common. “The one thing that I’m trying to avoid is something that happens with different people taking medications to stop of Wall Street, school gossip or car bombs in Syria. The closest thing to terror is the Indiana other medications from doing stuff,” says Graden. “Like, eventually you’ll take a medication for so long that you get a side effect, so you have to take another medication to deal with the other medication’s side effects. There’s this one Jones ride, and fantasy is crystallized in Cinderella’s castle or The Pirates of the Caribbean. person that I met that had to take thirty pills every day to stop all the side effects, and I’m like ‘I never, ever, want to Disneyland is a place of dreams and magic, an alternate reality and a place where a family knows get to that.’” Graden remembers the short period of time when he was on 40 mg of Prednisone, a drug used to treat low cortico- it’s safe. steroid levels. “I just get really emotional. I’d either get really angry or really sad and start crying. It affects pretty much everything. If you go online and look up the side effects, if you take it for long enough, it can pretty much kill For Brianna, Disneyland is much different. you. It’s a steroid. But now I’m only taking 5 mg, so it’s not a problem, and you have to take it for quite a while before “So we’re going to go to Disneyland, for example,” Laura explains. “[Brianna] was pretty young the first time we any of those bad side effects come.” went to Disneyland...two, three? So you need to bring the [liquid] supplements. She’s on multiple vitamins, so you Physical complaints are not the only effects of constant medication and sickness; teens with chronic illness often need to measure how much you’re going to need for the trip, and you don’t want to carry the whole bottle because, first battle depression. of all, you don’t want to lose any of it, and also, it’s hard to [replace]. In fact, we went through a whole thing when the Brianna recalls the period just before her liver transplant. “I was super depressed. I couldn’t walk anymore. I would manufacturer was going to discontinue that specific kind of [supplement]. go on trips and I couldn’t really walk. I felt like life was not worth living anymore. I was super tired; I was not really “Anyway, you also have a child that’s fairly heat-intolerant and needs special foods and special medications, so there at all. It was hard on my family. I went to my doctor and I told him that life sucked, that I don’t want to do this you’ve got to pack and plan for that length of time. Later on, she can no longer get enough Vitamin K from supplements, anymore. I was done; I needed a new liver. My doctor said, ‘Well things will get better,’ and I told him, ‘No, things and so then you’re also packing, like people with diabetes, the needles and the medication, and it has to be protected will not get better.’ from light, and it can’t get too warm. These are the things you have to think about when you go just on a trip. Even just “I was dying, basically. I felt it.” to go for a small outing, you have to think about these things.” As difficult as treatment is, it does help. “It’s noticeably different when I take pills,” Graden says. “The pain is bet- This is what those who don’t face chronic illness take for granted: the future. The future is what you plan for, but ter. It’s definitely good that I’m taking medication.” when the future is cloudy, and the contingencies pile up, the future becomes very complicated. So even a trip to the And sometimes, patients feel like their own health is an experiment. Graden explains, “I mean, it’s sort of all experi- Happiest Place on Earth is tinged with worry. Features Page 9 A sickness can flare up at any time. It can get better; it can get worse. Bodies are unpredictable, and when they un- dergo stress, problems accrue. Living, in its most basic moments, is never as carefree as Mr. Toad’s Wild Ride when you’re dealing with a disease. The planning that goes into a Disneyland trip is only a tiny microcosm of a lifetime of worrying about the future for sick teenagers and children. Those who live with an unpre- dictable illness can’t feel certainty about the symptoms of their illness in the next year, month, or day. Our concepts of the future are based on what we can predict, so when events are unpredictable, the future loses color and definition, replaced by an amorphous grey. “Illness uncertainty is present for both acute and chronic illnesses,” explain Lisa Johnson Wright, Niloofar Afari, and Alex Zautra in Illness Uncertainty Concept: A Re- view. It is a “cognitive stressor” and removes a “sense of loss of control,” bringing a “perceptual state of doubt that changes over time.” The stress of lacking control over what happens next, can increase hopelessness and exhaustion for those with diseases and their families. Uncertainty, according to the authors, is “inherent in the human experience but is even more salient when one is presented with a life-threatening or chronic illness.” Dr. JoAnn LeMaistre writes in After the Diagnosis that “the patient and the family must cope with the fear of an unknown and unknowable future.” But youngsters like to look forward. Adolescence is a time of transition, and most teenagers, even those with a serious illness, want to plan for adulthood. “I decided that [I wanted to be a nurse] when I was in Stanford, actually,” Bri- anna explains. “When it first hit me, I was right out of surgery, and I watched all the nurses go with their coats, and I was like, ‘I want one.’” Watching a nurse respond to a crying baby, she thought “I want to be with that baby, and I think I can do better than that nurse can.” Brianna dreams of attending UCLA, and her “huge dream through all of this was to go to Hollywood and be in a movie.” After graduating in June, she will attend Cabrillo Community College to “try to get my life back together after this huge uprooting.” Connor, graduating with Brianna in June, wants to be a Spanish teacher be- cause he loves the language. He also has interests in editing, nutrition, and food: “I just really enjoy food, so maybe [I’ll be] a chef.” He plans to study at Wash- ington State University. Graden will graduate in 2014, but “I really have no idea [about college],” he says. For teens like them, hope lives next door to worry. While Brianna’s liver transplant ended some of her symptoms, she still has problems with her immune system and deals with issues brought on by the transplant. “Basically, I changed all my problems before the transplant for new ones. The stent has a possibility of closing off. My immune system is down, and it will always be down for my entire life,” she explains. But the liver transplant has changed her life. “I feel new,” she says. Connor’s fight with cancer has given him some new perspectives. Not only is he more careful (“It’s changed my life in the fact that I wear sunscreen now!” he laughs), but it has also given him an appreciation for the bal- ance between health and illness--a new appreciation for living. “I know this sounds cheesy, but life is super short and delicate, and you really do need to live each day as if it’s your last.” Graden’s illness also affects the way he sees the world. Sometimes he hurries and tries to fit more things into his life. “I try to get things done faster, to get to the next thing to make up for stuff,” he says. “But it doesn’t really work. I mean, you do things faster, and it kinda takes something away from it. You’re always trying to get to the next thing. I think it takes away from whatever you’re doing. I’m sure most people feel it sometimes, like trying to cram everything you can because you wanna do more stuff, but then having it ending up being less quality because of it.” Graden will most likely spend the rest of his life dealing with the symptoms and complications of lupus, and for this reason, his life will never be truly “normal.” Like his Fridays, Graden’s life will be split between two worlds: the usual and the unusual, the comforting and the strenuous. It is in the other part of their lives, then, in the so-called “normal” aspects, that Graden and the others will grow. Brianna hopes to be- come a nurse; Connor is off to college to study Spanish. Graden likes to swim. “Swimming is the perfect sport,” he says, “because with basketball and other sports, you have a lot of joint impact, and that hurts. When you’re suspended in water, you have less.” He’s good at it, too, once winning 21 medals over the course of four years. Connor doesn’t apply makeup on his face to cover his scar because the hair will grow over it--and because more than one friend calls it striking. Brianna has begun to learn to drive since her transplant, which signifi- cantly increased her ability to focus: “I’m gonna try to learn how to drive now that I don’t have this fog.” She will take her driving test sometime this summer. And she continues to investigate the world of food. “When she was diagnosed,” explained Laura, recalling the terror of those first weeks, “Alagille had a paper on trying to predict prognosis. It predicted she would not make it past two years.” Brianna celebrated her eighteenth birthday last January. Features Page 10 Its a Long Way to the Top If You Wanna Rock n’ Roll with a part of me that I had never connected to before. ter with some of his early success. “I had never used [it] By Devin Reilly I think partway through the trip to Israel, probably the before, and I decided to log on and see what happened, M day the Western Wall, I realized in a bigger way how and suddenly I could see all these huge music industry elaku Assegued sits alone in a library at Co- insignificant we all are, and connected we all are, and people, what they were talking about, who they were lumbia University. He’s studying for finals. that each of us has one life to live and should do what talking to.” His cell phone rings. He picks up the phone. we love. He then began his search for a songwriting manager. It’s an artists and repertoire executive from EMI Music. “I already had an internship lined up doing PR in San “I found a few, and emailed some of them, saying She says she wants to work with him on songwriting Francisco for the ten weeks after birthright.” who I was and attaching those four songs, and within projects at EMI Music. a couple days Four years ago, Kirby alum Assegued was of sending out about to graduate high school and go to col- emails, I got lege. “I got into my dream school, which was a call from Columbia,” says Assegued. “I wasn’t sure at a manager all about my plans for the future. I knew I whose client loved music, but I didn’t believe that making has credits it in the industry was possible. So I decided with Tyrese to go to a non-music school to explore other and Jacob career options.” Lattimore. Assegued had spent high school playing in The manager “multiple bands and rap groups” and writing, said he loved recording, and mixing songs in a studio he had my work and built in his parents’ basement. “I actually pro- was interested posed the audio engineering class and subse- in managing quent recording studio with a friend of mine,” me. I freaked says Assegued. out, started After graduation, Assegued moved to New calling every- York City and started classes at Columbia. one I knew, “I decided to study sociology after taking an thinking I had intro class made it. It my first se- was an amaz- mester that ing day. I re- I absolutely ally felt like loved,” he it was all pos- says. “And sible for the my sopho- first time in more year, that moment.” the School Unfortu- implement- nately, the ed a busi- Assegued knew he manager’s offer had problems, and Assegued decided ness minor didn’t want a desk job not to sign with him. "However, he told me he was net- in conjunc- but he took the intern- working with a young upcoming producer in the UK tion with ship. [David Connor] and sent me some of his tracks. The the business “During that intern- tracks were very well developed, and I had an easy time school, so I ship, I worked on one working with them." tacked that song for a ridiculous “Soon after I saw an opportunity to write a dance on as well.” amount of time, maybe pop song for an advertisement from an A&R I follow How- a month, tweaking and on Twitter, and thought I could write a great record to ever, music tweaking it and believing one of Connor’s beats. So I emailed him and asked if I did not fade that it was going to be the could use it. It was about 5pm at that time, and the song from Asseg- best song I ever wrote. I was due at 9am the next morning. I wrote the song in ued’s mind. finally finished it, had it maybe an hour, then convinced a girl friend of mine to “ T h e mastered, and put it out sing on the song, since it needed to be a female pop song. goal at the to Facebook. Most of I mixed and mastered the song late into the night. I prob- time was to my college friends were ably finished it around 3:00am. be an art- surprised to see that I “We didn’t get the advertising placement, but David ist. What I did music because I had [Connor] absolutely loved the song, and he decided he would do at been slacking so much in wanted to work with me on his other projects. That was the time is the past two years.” another kickoff point. In the last three months we have buy instru- The song went had potential placements from a wide variety of artists, mentals off the internet and write melodies and lyrics to over well, but “nothing really came of it, industry-wise,” including Flo Rida, Chris Brown, and The Wanted. them, and then record them with my studio set-up in my says Assegued. “However, it did change my perspective. “A couple weeks ago David flew into New York to dorm room. I realized my own talent. Every night after work I would discuss signing with new labels and to network in person “I wanted a record deal, but had no idea how the in- stay up for hours learning how to tweak my vocals and with his contacts in America. He visited EMI, Sony, and dustry works, and I was basically half-assing my pas- mix the record, and write better lyrics.” some upcoming smaller sub-labels. We had plans to visit sion, which is no way to do it. I remember calling home Inspired, Assegued wrote relentlessly. each other, but he ended up being too busy. When he got and being really disappointed in myself, saying that my “Over the next few months I wrote four more songs back to the UK, though, he texted me, saying, ‘We’ve life didn’t feel complete and that I wasn’t doing music that I was happy with. The last was a duet I wrote for me got a potential with Chris Brown, and I told an A&R at enough. I was super sporadic and unfocused, only put- and a friend of mine. That last song, I thought, was pretty EMI about you.” ting out like one song every couple of months.” dope, and I decided to put four of the songs on iTunes The A&R called Assegued within five minutes, said Assegued persisted, and halfway through his sopho- and Spotify and see what happened. I had heard from she was very impressed, and offered him a position more year, something changed. “I landed an internship a family friend who interned at Universal that a lot of working on songwriting projects at EMI and elsewhere, at Jive Records, Sony Music in the A&R department and A&R executives search for talent through Tunecore, so I including Disney. worked for the A&R to Britney Spears, Hot Chelle Rae, used them as my distribution service.” “This summer I will be working primarily with David and other artists. “The whole thing cost $20 , and I made $34…so re- and the A&R over at EMI on various songwriting proj- “I got somewhat of an insider look at what goes on ally $14.” He laughs. ects,” says Assegued. at labels, and learned how hard it is to get signed these “I started to question the feasibility of becoming an “I’m not going to really be satisfied until I reach the days. I still had that drive to be an artist, but I wasn’t artist after that, and also began to question why I wanted pinnacle of this passion, so until then it’s work, work, putting the work in. My internship ended when sopho- to be an artist so bad. I had heard stories about artists work. Even if I fail miserably, I’ll be smiling all the way more year did, in early May. In mid-May I turned 20 and starting as songwriters: Jessie J, Bruno Mars, Katy Perry, down, because I’m doing what I love. I may be a hope- the day after I went on Birthright." Birthright Israel is a Ne-Yo, The Dream, etc. So I decided the week before the less optimist, but I truly believe if you believe in yourself not-for-profit educational organization that sponsors free finals of my junior year that I would put in some effort when you’re young, the world opens up for you. I guess 10-day heritage to Israel for Jewish young adults. networking as a songwriter.” that’s the advice I would want to give anybody looking “I consider that day the turning point. [I felt] a lot of Assegued credits social media networking site Twit- at the stepping stones ahead.” emotions at once; leaving my teen years, and connecting Page 11 Features red, match her pants. Throughout the interview, she taps self. “My horse kinda went rodeo on me one day and I hit by Avalon Ashley her fingernails on the table. the ground on my hip. It doesn’t hurt like normally, just, Kennedy is more comfortable. She describes her first if something hits me, it feels like someone lights my hip Y our horse is like your teammate; like, experience with a horse. "The first time that I actually re- like...on fire. Yeah, and there’s not a whole lot you can do the only real teammate you have member riding a horse I think I was... I was two and my to correct it.” She shrugs. “It’s just something you come in a competition. I know it might parents-we were at this fair thing and my parents just kind to accept. Stuff happens, and you just kinda get over it.” sound a little crazy, but if anyone’s re- of decided to put me on the pony. Hah." Her voice wob- Nerve damage in the hip is preferable to other results. ally looking out for you, it’s your horse bles as she laughs. Death, apparently, is not unheard of at horse shows. 'cause it’s the only person-” Kennedy: “I saw a girl killed in a competi- Kennedy Alexander squints, then tion.” rolls her eyes, probably because she Intica: “I saw someone die on a Kirby just called her horse a person. Her cross country course once.” hands motion in the air, swatting away Their voices are the slip-up. blunt and matter-of- “I mean, not person, but the thing fact. you have to work with. I can be These girls competing against Intica,”-sitting are accus- next to her, Intica Jaquith bobs tomed to Cowgir her head at the sound of her name risk, but while Kennedy’s voice gets high- they pro- er as she starts to laugh-“and I cess and don’t hate Intica but secretly, in move l the back of your mind, at horse o n . s shows you’re hoping she falls They off.” They laugh. “It could be turn it your best friend, and I mean it’s i n t o a d - Students so crazy 'cause you’re just like, ‘Okay, please, just fall off, fall off! vice, Gallop t So you’re disqualified, please!’” an ex- peri- o Glory This is the kind of competition found in the surprisingly dangerous ence to sport of horseback riding, where riders remem- compete in an array of styles. Practice ev- ber. Future ery day of the week, training two weeks be- reference. fore shows, and taking trips to competitions “The horse across the US is mandatory for serious com- freaked out in the petitors. While horseback riding can be just a arena and reared up hobby, something fun to do for PE credit, to and fell over backwards these girls, it is their lives. Kennedy chuckles on the girl and just crushed and Intica looks at her in agreement. “Your horse " Ye a h , her head, like in the helmet. The is the only thing that’s not hoping you fall off.” y’know the little helmet just snapped like -,” Kennedy makes a Kennedy Alexander, a junior, sits perched on the pony ride things? Yeah, they noise in the back of her throat and slaps her hand against edge of her stool, hunched a little over the table because just like put me on there and were like, ‘Picture time!’ the white table. she's so tall. Her elbows rest on the edge and make tri- And then, I don’t know, it just kinda stuck." Is either afraid of dying on course? “I mean, there’s angles where they meet her arms, fingers posed under When riding styles come up, the two start jabbering plenty of things that you can do where you might die, but her small chin. It's a sunny, warm-looking day, yet still in horse lingo: Western, English, Dressage, and more it’s just not something that you’re thinking about. Like, cold. Normal, as far as Santa Cruz weather goes. Ken- terms which are "hard to explain." They talk fast, back if your horse is freaking out, you’re not thinking, ‘Oh my nedy wears a yellow zip-up and sweat pants. Her long and forth and somewhere in the conversation get to talk- god, I might die, I might die!’” Kennedy's mouth stays corn silk hair is arranged in a ponytail, ironically, which ing about cowboys. "Western isn't as pretty," Intica says, slightly open as she laughs, hands fanned out in front of sags at the back of her head, strands falling out around shaking her head as she thinks and then backtracks, "I her, palms up. Intica giggles, “Yeah, you’re more think- the front of her face. mean, it can be." ing about how to calm it down.” Currently she is ninth in the nation in Show Jumping, "Yeah, they look like cowboys, though. Yeah, yeah, “Yeah, you’re just thinking about how to calm him the category she competes in. "You're given a course of and then English is like... tights, and tall black boots and down and still look good;” (laughing) “if you’re gonna jumps to jump over and you have to jump it as fast as helmets. Rodeo falls under the category of Western." go, you wanna go out in style!” you possibly can and can’t knock over any of the rails." Kennedy pauses and bites her lip, debating. "I’ve rid- Injury is inevitable and as the sport advances and Kennedy explains. "There’s a whole, huge, laundry list den a bull. Yeah, just to do it, not like at a rodeo." Intica changes, new risks arise. On average, 200 people are of stuff you have to do to prepare [for competitions]. bursts out laughing and leans back in her chair, shaking hurt riding each year and a third of the accidents are fa- Usually, like two weeks out, I’ll start getting ready. Right as she giggles. Kennedy's laughing too but finishes her tal. Injuries to the nervous system are the most danger- now we're working on tighter turns and getting over a thought. "Yeah, I was five. My mom has a video of it; it’s ous because one could easily end up paralyzed. And ac- course as fast as you can, as clean as you can." The pres- pretty funny. In, like, my blue sequin western outfit....It cording to The New York Times, on average 24 horses sure to keep her title and for the upcoming competitions was pretty epic." die each week at competitions across America. is mounting. Her next show is on the last day of school Styles of riding date back to as early as the 1770's But at a competition, your best friend is your horse. when she leaves to go to Sacramento for five days. There when Western style riding originated. It has changed As Intica says, "[The horse] can feel when you’re scared," really is no break. "At first the pressure was just kind of dramatically, from cowboys herding cattle to a complex so it is vital for horse and rider to trust each other. ridiculous. But then again, that’s why I start two weeks style of riding performed all over the world. The type They glance at each other as Kennedy starts talk- out. So then I just have to do a little bit every day; if you of horse and saddle used during riding are determining ing, then face forward. "On a regular day-to-day basis, wait till the day before then it’s like, euh, this whole, big, factors as to which style is which. One of the main dif- you can't really afford to be scared 'cause huge ordeal." ferences between styles is how the horse moves; Western you're not there for yourself, you're there "It can be really stress- ful." Intica, sit- horses tend to be slower and more relaxed in their stride for the horse. When you freak out, ting next to her, is a few years younger and while English horses have a longer, faster stride. they freak out. You have to force still a freshman. Her brown hair But for all the different styles, the sports have one yourself not to be scared and has sheets of faded red in it and thing in common: competition. just kinda... get over retro-cut bangs hide part "Every show you compete against it." of her face. Un- your friends. Because, I mean in horseback riding, derneath, her eyes it’s not like most sports in the way you compete on are edged a team most of the time. I mean, like sometimes around you do, but most of the time it’s just you with and your horse. That’s your team. And then you’re kinda trying to knock your friends out of placings." Intica guf- faws while Kennedy snig- gers and continues. "I don’t know, I mean it’s Jaquith (above) and black, pretty fun especially Alexander (right) when you can joke show off their jumping t h e skills at comeptition. s a m e about it with your color as friends, but there’s def- her leath- initely a lot of... horseback riding rival- er jacket ries? I guess? Like, there’s definite- ly a lot and nails. of girls I go to a show, and I’m like, ‘No, I’m Her lips, gonna kick her-’," she glances at the computer bright recording her voice. "‘I’m gonna beat her up. We’re gonna do it.’ Or like, you don’t like a girl because she’s beaten you in the past or she badmouths you at shows and stuff. Yeah, it get’s pretty competitive; it’s kinda crazy." The com- bination Intica smiles, "Especially if they're better than you." of the two of them- Kennedy's She then offers up an observation. “I’ve never gotten that wry humor and the way she self-edits, hurt.” Intica's quiet demeanor which turns into “I sprained my wrist,” Kennedy breaks in. “I have raucous laughter- is mystifying. They are nerve damage in my hip from riding, and then I have... dissimilar: personality, friends, style, even yeah, quite a few scars.” It's not that she seems proud of looks. Yet they are close friends, horses be- her injuries, more like she’s not above laughing at her- ing their common interest. Page 12 News D.I.Y. Dance From Gaga to Bollywood, the Dance Company choreographs a final show A By Isabel Martin man choreographed her own what to do, I just dance studio working as hard “[Pappastergiou] and I did piano melody dance to “And the Boys” by make it up on the as I could with friends.” it only because we knew we›d projects loudly over Angus and Julia Stone, per- spot!” A tough tech have lots of fun, and that›s the speakers as the formed with Arwen Steinack- “I l o v e week comes the point of the piece,” ex- lights flare on, and er and Ruby Silvera. “When learn- i n g with every per- plained Cockerham, laughing. the silhouettes of Kirby’s I choreographed my piece and t h e dances this formance. “We messed up pretty badly Dance Company appear on asked my dancers to come into year, especially “Tech week one night, but we just kept a blue tinted background. the studio on a Sunday the ones that were w a s an adventure, on swinging around until we Dancers begin moving to to finish it, I honestly ex- c h o - reographed as al- ways,” says figured out what to do.” Intro the sound of Adele’s voice. pected a lot of grumbling,” b y my Petro- celli, who student Erin Soule-Albridge Dressed in burgundy Weatherford admitted, but h a s done many agreed, noting that perform- leotards and black was proven wrong. “All my theater and ing can be “scary but fun in leggings, or a grey shirt dancers were completely en- dance tech the end.” for the guys, the Kirby thusiastic on wanting to finish weeks. “It Before the final perfor- Dance Company begins and perfect all our dances.” was so fun to mance, a short film lit up their show Infinity at “‘Judas’ was quite the ad- be able to see my a screen onstage: dancers the Olivet Community venture for me,” comments vision of ‘Judas’ stretching out their limbs and Theater. Craig Petrocelli, a graduating come to life with preparing themselves as the Beth Riley, Dance senior. “I had never choreo- the sound and lights. sound of heart beats in the Company director, graphed a dance before be- The first day of tech background. Dancers tie their appears on stage af- cause I was too ner- was actually the first shoes, pull down their tights, ter the first dance. She vous, but I really time I had ever watched the rotate their wrists. “What I talks about the hours wanted to do it, dance without partaking.” like about dance is…hmm… her students rehearsed so I did. I don›t Patel also enjoys the mo- there’s nothing quite like in the studio, the stress think people re- ment the practice and staging it,” says a voice. The short of the past week, and alized this in the friends,” come together: “Teching isn’t film Why I Dance, demon- the enthusiasm of audience, but the s a y s fun. You’re dancing for like strates the reasons people the dancers--even inspiration behind Makai twenty minutes while the choose to dance: Healing. though kids they ‘Judas’ was resisting Hernan- light and sound people can Connection. Happiness. Ex- are up and dancing temptations and what dez, a figure out what they are go- pression. Relaxation. The film by 7:15 in the looks so fun and dar- fresh- ing to do, but in the end it›s shows toddlers, college kids, morning. ing but you know you man. definitely worth it. Lights se- kids with down syndrome, and “I really shouldn›t do. At first, “I riously make a HUGE impact old men all doing one thing: pushed myself in I felt like some of my on how your piece is viewed: dancing. One break-dancer dance this year ideas in my head were at the beginning of my piece declares, “Right now, dance is because it was too difficult for me there was some sort of a sil- one of the biggest and cheap- what I felt was to actually exe- houette, and it really added est therapy that everyone can the weakest of cute, which they was another dynamic.” h a v e in terms of stress re- the three areas of were, so things amazed at “I ate a lot of salads lief.” mu- si- adapted along how the danc- that week,” Following the the pro- es where is so final performance, cess.” Dancers advanced and after all the cal wore gold bands being dancers had the- and guest Nahshon taught taken their bows, atre, Marden, a dancer b y o b - R i l e y handed out and I at Cabrillo Col- teenagers serves Petrocel- roses to each of the seniors, wanted to lege and friend who were 15- li. “Actually, it is just about all recalling memories with each be stronger of many Kirby 17 years old.” I ate for dinner! Emma, Sarah, one. “This year was amazing for my college seniors, and Following intermis- and I called ourselves the Sal- [to work with the seniors] auditions I had.” Petrocelli en- sion, Petrocelli and senior ad Car!” because they took so much Freshman Gil- gaged in a mini Connor Cockerham danced to Patel laughs as she recalls initiative,” says Riley. “We lian Weatherford dance-off. ‘Paradise’ by Coldplay. practicing. “The progres- had a really good group who put in hours of hard work Patel performed a “‘Paradise’ started out as sion of the seniors trying to just motivated each other and as well. “The Kirby Dance Bollywood solo: a solo,” says Petrocelli. “I choreograph together for the it moved forward in a very Company had been working dressed in red, was practicing one day with senior piece was quite hilari- positive way. I’m sad to see on our final dance showcase orange, and hints Connor in the room, and I ous. At some point, at once, them leave. Arishna and Craig for about a semester now, o f green and blue, j u s t asked if he wanted we tried to do the wave with were in my first show, and Ar- and after lengthy rehearsals, she filled the stage with color. to do the dance our bodies, and it was a HOT wen and Maraya came along block study halls spent in the An Indian tabla and finger with me. The MESS!” Sighing, she leans as sophomores. Connor joined dance studio, and innumerable chimes filled the air as the se- chemistry back in her chair. “Hell week this year and was an amaz- trips to Starbucks and Whole nior twirled on stage, silently when you was definitely rough, but when ingly charismatic addition to Foods, we are finally done!” singing along. Barefoot, she dance with is it not? We had some really the group.” Arishna Patel, a se- moved her hips and wrists and someone, crazy problems, like when the Even after giving flow- nior, agrees: “I feel like I lived clanged large silver brace- e s - sound system started smoking ers, Riley was still onstage, in the dance studio for weeks. lets together. and the booth was filled with hugging her departing stu- If I couldn’t find Craig around “I’ve been cho- smoke,” she continues while dents and wiping away tears. the school, I knew he›d be in reograph- laughing. “Yeah, the “They›re very committed, the dance studio...it was like ing tech people had to and I really hope that will go our home base!” She laughs. evacuate!” on,” she says with a grin. To “Every Study for the pecially The eve- encourage her students to not Hall or free annual dance someone block their passions when per- shows since my ning also form- ing she presents lunch, we freshman featured the In- what American were tro To Dance class, dancer Martha choreo- Graham said to her graphing, fellow dancer Agnes rehears- De Mille: “Each one of ing, or learning each other›s you you has a gift to offer to dances. We definitely took year,” noted Patel, “which love, is amazing. We perform- ing a non- the world and if you block it it more seriously than in the was actually when the Kirby worked together on the dance, traditional salsa. The class the world will never have it. past.” Dance Company had its first and it was so fun because it sassily shook their hips to If you let it be free and you In this year’s performance, show. So this year I choreo- just felt like we were such a ‘Hey Mambo’ by Rosemary express yourself and your pas- the students took an active roll graphed my own solo, which powerful force, no matter how Clooney, generating enthu- sion for life, dance, and living, in the dance routines. “Ten out isn’t a big deal because I’ve cheesy that may sound!” He siastic laughs from the audi- it can touch someone else and of the overall fourteen pieces been doing solo things my en- chuckles before continuing: ence. Senior Connor Cock- then it’ll live for infinity.” were choreographed, either tire life,” referring to her ac- “Between that and ‘Judas,’ erham, who helped with the in part or full, by students,” tive role in rollerskating, and basically my second semester dance, performed with best says Weatherford. The fresh- added, “And if I don’t know afternoons were spent in the friend Analise Pappastergiou. News Page 13 Promenade at the Chaminade Roses, promposals, and marshmallows dipped in chocolate highlight a Venetian evening the hills.” much we color-coordinated,” said Brock. “Ava’s dress by Adriana Brock “I thought the venue was exquisite,” said sopho- was red, fire engine red, so my nails were fire engine T more Annabelle Valenzuela. “You could definitely get red, and my shoes bright red. I wore a black and he lights are low, the music loud. Shoes lie a feel for the Venetian lifestyle,” white dress, and her nails were black, and her shoes abandoned in a pile, a mix of white strappy “It was romantic, all nicely lit,” noted junior Sonya were black, and her corsage was white.” heels, red pumps, and green flats. Nearby, half- Nemes. “We attempted to color-coordinate,” admited finished glasses of iced tea and lemonade rest on ta- While the DJ wasn’t universally adored, people Nemes. “I got my dress quite a bit before, so we went bletops. Jackets are strewn on chairs, corsages placed nonetheless enjoyed the dancing. Said Intica Stamy, a to the store together. But we didn’t bring a sample carefully atop them. The owners of these shoes, jack- freshman, “My favorite moments at Prom were danc- of the cloth, so his shirt and tie ended up a different ets, and corsages are outside, clustered around small ing with my best friends.” color than my dress.” fires, chatting animatedly, or inside, dipping fruit and “I hung out on the dance floor, of course!” ex- For Gregozek, the problem with color coordinat- marshmallows into the chocolate fountain. claimed Valenzuela. ing was a bit different. “It’s kind of difficult because The song ends, and another begins. “Throw a wish Others enjoyed additional aspects of the venue. “It you want to keep some sort of mystery around what in the well,” a singer breathes, “I’ll never tell.” was really nice outside because it was night time and you’re going to wear, so it’s a cute surprise, you An immediate shift occurs. Chocolate lovers drop it was overlooking the city,” said Nemes. “I took one know?” she said. “But you also want to make sure their marshmallows; chatterers leave their circles of of the marshmallows from the chocolate fountain and you’re not clashing.” fiery warmth. Couples link hands as girls pull their roasted it outside on one of the little fires.” Pictures were also a highlight of the bash. Said dates toward the dance floor, just in time for the first “The outside area was really, really beautiful—we Brock, “We took pictures a lot of places—we took chorus of “Call Me Maybe.” lay on the grass and stargazed because it was just so some at our house, and then we went down to the nice,” said sophomore Lizzy Davis. lighthouse and took pictures with a big group. It was *********** “I liked the people who were walking around with like half of our grade—almost twenty people.” masks on,” Brock said. “I thought that was a nice “It was a very heartwarming moment when the A few weeks earlier, in mid-afternoon, four letters touch.” sophomore grade compiled on the grass,” gushed Va- span twenty feet of the parking lot, each in a differ- Half the fun of prom was getting ready and tak- lenzuela. “It was very sweet.” ent design and color. The entire production, which ing pictures. Gaggles of girls gathered in different “It was really windy, though,” said Brock, “so I had took two boxes of chalk, involved half the sophomore houses, applying and reapplying makeup and gazing to have my mom hold down my dress while I put on class. Inside the “o” stands sophomore Ava Poen, every few seconds into the mirror. “I got dressed with my corsage.” beaming. On the concrete is a word followed by a a bunch of other girls, and their sister’s friend, Tessie There was no lack of photography. “All our par- question mark, a word spoken frequently this time of Murphy [Kirby Class of 2010] was there to help us get ents were there, so we got a lot of pictures, from like year. “Prom?” it reads. ready,” said Davis. twenty different cameras,” explained Davis. Sophomore Eleanor Brock was delighted. “I loved “I had Tessie do my makeup and hair, which was Many groups met at West Cliff. “The lighthouse is how creative she was,” she said. “It was so cute. Of good, because I have no idea how to do that girly one of the most popular places for prom pictures,” course I told her yes!” stuff,” said Gregozek. said tenth-grader Dana Hemmert. So-called “promposals” of this sort were numer- Nemes “got dressed at Ethan’s house with a whole Others chose different spots. “We took a couple ous, prompting the largest turnout for a Kirby prom. bunch of [her] friends,” including Kopit, Miranda of pictures by ourselves at our friend’s house,” said A fairly new tradition, asking a date in a creative way Baker, and Kennedy Alexander. Koltchev. “Then we took some pictures at the actual was popular. Said junior Ry Faraola, “I really wanted Picking outfits was, depending on who you ask, place in front of the backdrop they had set up.” The to give Zoe [Gregozek] something special—we had either one of the best or one of the worst parts of backdrop featured a canal in Venice with a gondola had kind of a build-up, and she knew I was going to Prom. Gregozek, a girl of the first opinion, exclaimed, students could sit in. Saalisi and friends employed a ask her, so I wanted it to be really, really cool and spe- “I picked my dress because it reminded me of a ‘50s different strategy. “We used two disposable cameras cial. So I made an accordion book, with each letter movie star, and like a Hollywood classic theme. And throughout the night,” he said. “Those are the better a different font, and then for the ‘o,’ I found a dried it was just so… elegant.” photos.” and pressed orchid that I had made months before- “I chose my dress because it wasn’t too long and it hand with her in mind, and I glued it onto the page, wasn’t too short,” said freshman Alice Koltchev. ************* so when she pulled it out it would say, ‘Prom?’” Nemes explained, “I picked out my outfit online Held at the Chaminade on May 25, Kirby’s Prom at www.promgirl.com. It was a really pretty color. I It’s the last song. Couples sway, friends or dates, was “much better than usual. It was really well put wanted a long dress that fit a special way.” heads on shoulders and faces tired. When the song together,” said junior Ethan Kopit, echoing the views Avalon Ashley, a sophomore, also got her outfit ends, girls gather their shoes, clutching them by their of many. online. “It was pretty and flowy,” she said. “I didn’t heel straps, and couples begin to filter out. Max Saalisi, sophomore, agreed: “More people want to go all puffy. Prom dresses these days are so As the last group leaves, Faraola grabs roses from showed up than I thought would be there. I was re- puffy.” all the vases. Says Gregozek, “Ry stole all the roses ally impressed.” The Venetian-themed gala featured Others chose outfits closer to home: “I chose my from prom and gave them to me, and it was this bou- a chocolate fountain, a view of Scotts Valley, and dress because it was in my closet,” explained Stamy. quet of thirty-five roses, and it was so heavy I could masked entertainers. Matching color with one’s date, an age-old tradi- barely carry it. Everyone said I looked like Miss “The venue was very classy,” s a i d tion, was generally followed. “It was America.” Dana Hemmert, a slightly hilari- ous how tenth-grader. “The choco- late fountain was won- derful. It was really p r e t t y, up in Page 14 News Selling The School The Marketing Committee chose also to redo the School website, a change led by Brown. “I was a central member of the auction committee, but as soon as that was behind me, it was time for me to go full out on the website redesign. All I’ve been involved in has revolved around that.” Brown explained there are two reasons Marketing through social networks why the site is being upgraded. Built in 2005 by students, the site is too old. “It’s just threatening to die,” she remarked. “Every time our server wants to update, types and misconceptions and determining “Social media is effective because most we panic because it might crash. “The last by Jason Ritchey ways to counter both. In November, with of us spend time online,” Hemmert ex- thing we want is for the website to go down W help from select students, English teacher plained. Thus, changes online are impera- right before an Open House.” hat is Kirby?” asked Amy Hem- Jeff House began making over a dozen tive. Hemmert, with help from other mem- Besides the platform, the site is dreary. mert, a Kirby parent of two. “Of YouTube videos describing the School bers of the Marketing Committee--parents Said Hemmert, “The new site will have an course we all know what Kirby from the perspective of students, alum, Enid Brock and Barbara Kay--have taken updated look, better navigation, increased is, but how do you express that in a way parents, and teachers. The videos have gar- the word-of-mouth campaign to the Inter- stability, and lots of great visuals.” Brown that’s concise, personal, and meaningful nered over 3,300 views since January. net, involving Facebook, Twitter and You- agreed, adding, “We’re going to have a to someone who’s not yet familiar with the “But [Shiller] left us in January because Tube. “Our hope is to grow the team so blog, too, which will be great for social school?” That has been one of the biggest he was offered a full-time position at UC we can make as big an impact as possible, media engagement. It’ll also help archive challenges facing the Kirby Marketing Davis,” said Marketing and Communica- driving traffic to the Kirby website and news stories to get more current informa- Committee over the past year, and that’s tions Director Evelyn Brown. “He got us building community,” Hemmert explained. tion up onto the site. This is a site not only one of the reasons for the newly formed off to a great start, but I would loved to She added enthu- for current families, but for prospective Social Media Team, which consists of have kept him longer.” families as well.” Kirby students, alum, faculty and parents. Shiller leav- Brown isn’t alone in the redesign- “Kirby doesn’t have a strong name ing process. Local graphic/web company out in the greater community,” Design by Cosmic was recently hired to Hemmert noted. “People have lead the renovation. Cosmic was selected either not heard of the school, primarily because of the breadth of its ex- or they think it’s a) a school for pertise and skills. It also consists of four “brainy” kids, b) an art school, c) team members, which “is particularly help- a school for misfits, d) a school ful because we need lots of help,” admitted for kids with learning differences, Brown. Over the past month, the Market- e) a school that used to be down- ing Committee has communicated and met town, or f) Kirby? Never heard of with Design by Cosmic and expect to have it. This means that we need to do a a working site in place for the next school better job of letting the world know year. who we are and what we do because “The largest challenge we face is creat- there’s no other school like it! Social ing a new website and marketing presence media is part of our marketing plan, for Kirby that is both informative and and as the name implies, it’s highly intuitive,” Cosmic founder Eric Ressler social and effective when lots of peo- stated. “We strive to create an easy-to- ple participate.” use website that will allow students, fac- The issues aren’t new. They’ve ulty, and parents to find the information been an ongoing challenge since the that they are looking for effortlessly and move to 425 Encinal. As Hemmert engage with Kirby’s community. We noted, since Kirby is no longer located are looking forward to exploring cre- in downtown Santa Cruz, people don’t ative solutions that captivate the core pass by the school every day. of Kirby’s unique culture.” The present Marketing Commit- Nancy Ondrejka, Kirby’s Direc- tee was formed a year go to find ways tor of Admissions, notes the market- to raise awareness about the School. ing has begun to reap rewards. “The “The greater Santa Cruz community compliments which I receive are al- didn’t know who we were, so we set out ways very pleased with the informa- to capture the essence of Kirby in a way tion provided on the website and all that could be easily communicated with those new videos. We had an appli- people not familiar with the school,” ex- cant who actually got accepted from plained Hemmert. “This was a tall order siastically, the Sacramento area. Sadly, his mom’s because one of the great benefits of Kirby “Tell your friends about Kirby. Talk personal plans changed so he needed to is that it’s eclectic, personalized, and of- ing meant about all the great things we’re doing here. decline the acceptance offer. He found Kir- fers a wide range of opportunities. Mes- big changes for the Marketing Com- ‘Like’ the Kirby Facebook page. ‘Like’ the by via the website as did a Contra Costa sages must be concise, so articulating the mittee. “I don’t want to say [the team] de- Kirby YouTube channel, and watch/share County female student. People appreciate true essence of the School without leaving volved,” Brown explained. “But we were all the videos. Follow Kirby on Twitter. the voices from the students, teachers, and too much out was a huge challenge.” much more structured when Barry was Volunteer to write a guest blog post. Com- parents.” This year things went into full swing. here. We’re still moving forward with each ment on the Kirby Facebook page and be It’s hard to trace how many people are The School hired marketing consultant member of the team focused on his or her sure to ‘Like’ posts that you like. We do brought to kirby by the videos or the site, Barry Shiller to lead the marketing effort. areas of interest and expertise. Mr. House such incredible things [at Kirby], but we as “a movement like this takes a while to He conducted a quantitative analysis of and Amy have been working together to don’t do a very good job of letting the out- build. But I don’t think it can hurt,” Ondre- non-Kirby families, uncovering stereo- build a Social Media Team.” side world know about them.” jka said with a laugh. We the Students. . . President is unable to attend the meet- ing, the Vice President assumes re- sponsibility. All elected officials, offi- cers, and representatives must remain off academic or behavioral probation Student Council writes a constitution before their election and during their term. The Constitution also includes rules for dealing with truancy and the by Andrew Amis we wanted to address, and we essential- tration of elections, officer positions, of- impeachment of officers. Removal of ly created sections and went to work.” ficer eligibility, and miscellaneous rules. any member of the Council, represen- A fter eighteen months of discussion, the student body has a constitution. The first governing document Stu- While all the officers contributed to the document, Hoffmeister was the primary It clarifies who is able to run for each elected office. tative or officer, requires a two-thirds “supermajority” vote from the Coun- drafter, and much of his text remains. The offices of both Secretary and cil. dent Council has signed, the document While a year and half seems a long time Treasurer are open to freshmen. The Sec- The new constitution does not defines internal rules and regulations for to draft a three-page document, the activ- retary serves as the secretary, archivist, represent a major shift in Council students ity generated a lot of thought. However, and typist for the Council and functions business or doctrine. Said Hemmert, “Generally what happens is the Presi- Hemmert lamented, “I can’t say it was as one of three officers who interact with “I would be surprised if very many dent graduates before it can be passed, steady work the whole time.” Because the Parents’ Association. The Treasurer people noticed. The only thing we and it is lost,” explained senior Brian the constitution was seen as neither vital maintains the financial accounts of the added was that the President and Vice Hemmert, Student Council President , nor time sensitive, it was frequently set Council, keeps records to that effect, President must have to have one year and the driving force behind the new con- aside for day-to-day Council business. and refills the vending machine (Previ- of Student Council experience; they stitution. This version survived because In previous years, Council regulations ous treasurers have primarily concerned must have been in Student Council Hemmert has been involved in Student and processes were passed down from themselves with the vending machine). for a year in the past.” This was added Council for several years and worked on Council to Council by word of mouth or The positions of President and Vice to encourage more people to join Stu- the constitution since its inception. observation. “Student Council has run President are limited to sophomores, ju- dent Council. The constitution also The constitution was started first se- on what’s been done on the past, and it niors, or seniors with at least one year details consequences for lackluster mester of the 2010-2011 school year by hasn’t been set on any written rules,” said of experience on Student Council. They attendance among Student Represen- then President Rory Hoffmeister with Hemmert. Every process and rule of the must attend all Student Council meetings tatives. help from Emma Stokes and Hannah current Council came from imitating the and All School Meetings, where they The constitution will go into effect Potts. last Council. will assume executive control, maintain- the last day of the school year. Hemmert recalled, “We decided what The constitution governs the adminis- ing order and conducting business. If the Page 15 News to showcase a skill long in the making: beat-boxing. His minutes of intriguing beats and a bit of culture. By Analise Pappastergiou unyielding voice provided the beat upon which each “We always end our Spring Concert with a song that singer based their vocals and brought an interest- is only seniors,” says Lewis, “so they choose it and learn I ing twist to many of the ensemble’s songs, most it together. This is the sixth year we have done the same feel like everything that I have accomplished over noteworthy of which was “I Am The Walrus.” song since a senior Henry Thompson chose it and sort of the four years in choir, and working with Drew, was The seniors, however, made up only a made it a tradition that he wanted to see go on. It’s what showcased tonight,” says Arishna Patel. “I cannot be- small fraction of those involved in the con- the teacher before me had done.” lieve it is already over.” cert. “We sang in a variety of languages,” As Chamber Choir filed off the risers, Lewis asked Patel speaks of the final concert of the school year, tells eighth grader Olivia McNary, “Chi- the seniors to join him in front of the church. One by Musical Memories, which marked Class of 2012’s last nese, French and German.” one, he talked about each senior and what an honor it performance. On May 24, Parents, grandparents, friends, The song in Chinese, had been, not only to know them, but to teach them and and peers joined together in the tall, seventies-inspired Moh Lee Hawh, was a watch them grow as singers and as people. A red First Congregational Church to listen to the multitude challenge given to just the rose was given to each, and emo- of vocal and instrumental ensembles come together women of various ensem- tional hugs were under the direction of Drew Lewis. bles. Although sung with ap- “The spring concert is probably the most parent ease, it proved to eclectic,” explains Lewis. “We’ve done classical be a difficult song to music, but then we also have a lot from musi- learn. Some were cals and pop songs. They are singing Whita- worried enough ker, Madonna, Brahms and the Beatles. It’s a about forgetting mixture.” lyrics that they “It’s always fun to put this concert togeth- taped them to er,” he says. “It’s a combination of things they the shoulders of have learned over the course of the year, and the girl in front it’s bittersweet to say goodbye to the senior class, of them. which has been very involved.” Following Moh Seniors Ben McCann, Craig Petrocelli, Maraya Lee Hawh, the Fisher, Arishna Patel, Teddy Fenster, Lucy Saldavia, male singers of Devin Reilly, Katherine Cook, and Carson Chapman Choir filed into showed a lot more than class participation during the the risers in bow- course of their musical education at Kirby. Petrocelli, ties and jackets, the current President of Chamber Choir, took extra joined by time to make sure his last concert was one of the best. shared. Out of the nine seniors, Fenster and Cook have been with Lewis the entirety of The his Kirby career. night end- ed with In line with the yearly tradi- the teary-eyed seniors singing tion, Petrocelli chose a song to “And So It Goes,” by Billy be performed and undertook the Joel. Starting in unison each responsibility of teaching it. “I branched off into their own have been working for the past solo, which proved to be an four years to get to where I was, emotional experience. After personally, on that night,” explains Cook’s solo, the tear’s out- Petrocelli. numbered lyrics, and, bit An opportunity to shine, how- by bit, the song faded into ever, was distributed amongst all tears and hugs, the singing of the eight seniors in the more ad- lost in the feeling of fam- vanced ensembles. Patel, who’s solo ily they shared. in the song “Butterfly” took home a “It was an extremely top award during their annual trip to emotional concert for all the Boston Music Festival, performed of us,” reflects Patel. “I a new solo that proved to be more of a don’t really know how challenge linguistically. I held my tears in for “I never would have agreed to a the senior song. Maybe song like this if it wasn’t for Drew,” it was because I knew says Patel, “and it was a great pleasure that if I started to cry, to be able to sing with the Jazz Band... the alto part would be Oh,” she adds, “and also I think singing missing.” The alto Pa- that song made me want to learn Portu- tel had to step in guese; it’s such a beautiful language and for was I’m kind of good at it…well, the pronun- ciation anyways.” The song, “Girl from one Ipanema,” took time to master and would of the night’s four Pia- have been impossible without the help of no players, Max a Cabrillo Portuguese Kirby parent, Edisione De Almeida who music student and the ac- spent hours working with Patel. companist to Chorus, to to For Reilly, it was the first and last year he would sing lead them in “The Duke b e in Chamber Choir. “It’s interesting singing in a choir of Earl”. The song sung [that] I have always looked up to as a student here. I al- proved to be one of the b y ways felt that being a part of it was an educational expe- most entertaining and Cook, rience. The choir as a whole is a lot more important than uppity songs of the but her any individual person’s contribution… especially mine,” evening. s o b s chuckles Reilly. “Being a part of something that big and “We are doing a song from prohib- that successful means a lot to me, and I’m glad to be go- a Bollywood movie that, on our trip last ited her ing out with a bang.” year, a professor said would be a great song for from being “Katherine was given the name ‘Screamer’ at a com- our choir to do. All semester we have been working on able to sing petition a few years ago,” points out Lewis. She stuck it.” Lewis says, describing Chamber Choir’s last song more than to that title during a soft but high-pitched rendition of of the evening, “Albela.” “The overtones, the harmonic a minute of the song. “Hysteria”. structure, and the song in general are difficult.” Their “It was an incred- ible way to end The Jazz Choir provided an opportunity for Fenster work paid off, however, as the audience experience four such an influential journey in all ways.” Making Memories Spring Concert Marks the End of the year and the End of a Journey Page 16 Local History A Home for One Man Makes a the Homeless Difference come out and have a secure place to go because they are says Rebele. “So, it’s a matter of retraining. Catching by Jason Ritchey and Zoë Gregozek required to save money while they’re in here,” says Re- those people up with classes at Cabrillo, maybe classes P bele, “They’re making some money because we provide through job training programs here, maybe getting on at ainted bright orange, the Homeless Services Cen- everything, so they can save. We require them to save Goodwill, where you can train to do repair work. The ter resembles a 70’s daycare, with cheery ever- eighty-five percent of everything they bring in whether counselor’s thing is to find out what you’re good at. Can greens lining the brick walkways and screaming it’s disability payment, wages, or whatever.” you use these computers at our empowerment center? children zooming around on pastel Fisher-Price tricy- The Day Center interior is a hodgepodge of hallways Can you get going with that so you become literate?” cles. In contrast, a six-foot black iron fence surrounds and stairs, everything a foggy grey. Residents sleep in the Rebele pauses. “One must be at least okay on the com- the building, each post ending in a spike. Philanthropist overstuffed couches and talk at the table while Rebele puter, so you’re able to navigate it at, say, a retail job, Rowland Rebele, though, is unfazed by the barricades or explains its individual components: There is a post office where there’s a little bit of computer skills, but most of the homeless wandering through the courtyard. Founded (“One of the things about being homeless is, if you’re it is showing up on time, etcetera.” However, even the in 1986, what started out as a small church-run operation really homeless, you don’t have a place for your mail basics of holding a job, such as people skills or being has grown into a community consisting of the Paul Lee to come.”) in the far right corner of the main room. It punctual, can be dif- ficult for those who Loft, the Rebele Family Shelter, the Page Smith Com- is the only utility that requires a payment—five dol- have been living as munity House, and the Day Resource Center. lars a month. A hygiene center with showers and societal outcasts “Page Smith came to our church, before this place was bathrooms, washing machines and dryers, and a for long periods of even thought of, and said ‘We’d like to ask the churches closet with a hand-painted purple sign above the time. to provide overnight shelter and food for the homeless.’ door that reads “Clothing Closet,” are all in the “For people And we said we would, along with about twenty-seven main room. Pointing to the door, Rebele explains, who have lived other churches in the Santa Cruz area,” explains Rebele. “That’s where we have the used clothing. All kinds from pillar to post, “So once a week, my wife and myself and my daughter of clothing for all people, men, women, so that you you have been would fix food for homeless folks, and another day of can get clothes. If you’re going out to an interview pushed around, the week it would be somebody else in the congrega- and you don’t look so good,” he chuckles slightly, it’s a long-term tion. We got a grant from this outfit called the Home- “you might take advantage of that.” proposition. less Council so that we were able to get transportation Above is the Lee Loft: women’s bunks on the left Some people who [for the homeless] to these various churches from here. and men’s on the right. In front of the post office, a stay at our shelter Homeless people could come here and get a meal, and man sits on a cement ledge, focused on his art. The here are back for then if they weren’t drunk or doped up, and they applied, sharpied outline of a mushroom stands alone next the second time. they could get rides to these various churches from here. to his finger on the bit of white poster-board. At the They come out, So we did that for about ten or fifteen years; it was good, top is a heart with a scroll, drawn like they’re doing we learned a lot. Most of us, after serving the meal, we’d a tattoo. He looks up bele takes well, but they Re sit with them and try and make a connection if we could. when Devel- time to play at lose their hous- A lot of homeless people have mental issues; they didn’t opment As- the River Street ing for whatev- want to talk. They’re in their own world.” sistant Dana shelter’s play structure er reason. But “When Rowland and [his wife came to Santa Cruz] Henderson they still wanna they immediately set out to become part of the com- kindly asks, get out of it, munity the only way they knew how: by giving,” a “Where did so we readmit presenter said in 2009 when awarding the couple with you sleep them. People the Gail Rich Award (an award given to local inspir- last night? sometimes come ing individuals). Rebele graduated Stanford University I was back to Page Smith Community House, where in 1951 and quickly became successful as a newspaper worried.” they can stay for 18 months, if they’re work- publisher. None of his fortune, however, was ever spent He grins, ing on their issues, getting training, moving for- on self-indulgence. A few years ago, he gave a speech reveal- ward, making progress. The key is making prog- to a graduating at Stanford. After, he said, “My theme ing a ress. Even though you start down a pathway that was, save your money, then give it all away when you’ve tooth- doesn’t work, if you are willing to start another got enough to live on,” which seems to be his life moto. l e s s pathway, learning another skill, doing something Though he walks slightly hunched over, the benevolent upper else, that’s good.” man moves surprisingly fast, pausing periodically to jaw, Despite the Shelter’s best efforts, it’s difficult hike up his pants as he makes his way towards a low a n d to recover from poverty in a city with a 12% un- building, the Day Center, on the opposite end of the a n - employment rate. So, the Shelter often provides the parking lot. homeless with bus passes and train tickets to places “After about fifteen years, with lower unemployment and living costs. This is the money ran out for trans- only if the person can demonstrate that leaving San- portation and for moni- ta Cruz is the best way to progress out of homeless- tors. Because, frankly, even ness, and not burden on another city’s infrastructure. though we were a Band-Aid, Rebele elaborates while continuing on the path to we didn’t solve the long- the Page Smith Community House, “We’re not about term problem. The govern- kicking people out. We don’t do that. It’s because it’s ment and the state look for much cheaper to live in Fresno...or North Dakota where outcomes, successful out- the unemployment rate is two percent.” He stops on the comes. If you’re gunna do swers in a paved walkway to tighten his belt, exclaiming, “My trou- something for the home- raspy voice, “I got in at the sers! How embarrassing for an old man!” less, they want you to do Loft.” He introduces himself as Shaggy, Located in the southern corner of the complex, Page something that’s produc- and describes his ink work: “Down here Smith consists of eight separate mobile homes set down tive, moves people out of I’m going to have a pot leaf. [The heart on foundations. “Three are for women and five are for their poverty and into a and scroll] is symbolic of my sobering men because more men are homeless than women,” Re- sustainable situation to up, how I’m getting better,” he explains. bele explains, aluding to the Santa Cruz Homeless Cen- being able to provide for “Do you have plans tonight? You sus, which found the majority are white men between 31 themselves. This place should come to poetry class at 7:30 in the and 60. Each home has its own kitchen, common space, does that. We’ve got to family shelter,” Henderson tells him. bathroom, and bedrooms. Forty residents can stay for up prove to those govern- “I’m actually really interested in that. to 18 months, meaning it’s not “emergency” but “tempo- ments, the taxpayers, I don’t have any plans, too,” Shaggy re- rary housing.” that we can do some- One of the eight sponds, laughing hoarsely. A woman A thin, concrete alley threads between the units, end- thing worthwhile.” Ac- Simth community Paige wearing torn jeans and a black Santa the center offers fo homes ing at a wooden patio and a few deck chairs. A high ce- cording to the 2011 r those Cruz sweatshirt assures Henderson that ment wall separates the highway from the garden, which in need Homeless Census and Shaggy’ll be there. Henderson, who teach- makes the street invisible, but fails to block the noise. Survey, close to 2 mil- es the poetry class, says it’s amazing how Three older women in white sit gossiping, smoking. lion Americans experience homelessness every year, brilliant some of her students are. “This is learning to live with other people,” Rebele most often caused by the gap between cost of housing The computer center, which he’s sitting in front of, says kindly. Just last month, explains Henderson, a group and income. It is estimated that there are almost 10,000 helps with computer skills and resume development of residents painted signs for each home. Hidden behind homeless in Santa Cruz County, of whom 54% have which will increases their employment prospects. “Fre- bushes only one remains, which reads, “The Fabulous been without permanent shelter for more than a year. quently, [homelessness is caused by] the loss of a job, Four.” Beside one of the homes sits an arbor, sheltering The estimated number in 2009—about 4,600. Regard- inability to get a new one, or the fact that what they were a radio player and a bench, where a man is fast asleep. less, the family shelter, “has an 85% success rate. People doing is now being done in China or somewhere else,” It’s his home.
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