HomeSouthern VoiceHis Secret Identity

His Secret Identity

by Emmy Buck

“Heal the evil. Heal the evil! Heal the evil!” Bony white knuckles clasped my brother’s head in a forceful grasp; strong arms swayed back and forth, taking my poor brother along in the rhythmic movement. Short reddish-brown tendrils decorated the scalp of the woman connected to these hands. Her eyes must have been squeezed shut in the same way the rest of her body was seized with the Holy Spirit. Her religious cries followed the festive tune of “Jingle Bells” by the Andrews Sisters, which echoed throughout the cafe. The climactic clash of jolly Christmas doo-wops with passionate prayer proved quite the unusual performance.

Just five minutes earlier, a woman had gracefully floated to our table and sweetly asked my mother if she might pray for my brother. Any response other than a strangulated “yes” would have received a scolding from Ms. Manners, our local advice columnist. The hustle and bustle of the mall, which surrounded our little haven in the Corner Bakery Cafe, dissolved into shades of red and green as our focus narrowed in on the festive exorcism.

My brother slumped in his bright red wheelchair, being pushed further down into a slouch by the weight of the stranger’s miracle-delivering hands. He glanced around the table to each family member, large blue eyes hoping to find something more reassuring than a hidden smile. Mom perched on the edge of her seat, wearing a plastic smile I knew well from years of reckless adolescent behavior. A strangulated laugh slipped between my grandfather’s chubby fingers as he attempted to cover his mouth. The sugar coating of the blueberry muffin sinfully melted in my mouth as I watched the show with humorous fascination.

I wasn’t laughing at the woman, really. But inevitable chuckles bubbled up from my stomach and slipped out, despite my resistance. It’s funny how assumptions fail to capture the truth of the situation. This frail, yet spiritually strong woman could never know the stories of each scar that runs up and down Eiler’s chopstick legs. She could never know that the splotches of white mucus on his shirt were evidence of Eiler ‘smegging’ himself. Yes, ‘smegging,’ or ‘to smeg,’ is the official verb of the Buck Household; it depicts the action of smudging remnants of unswallowed saliva onto yourself or others. If the woman leaned in close enough, it was possible she just might have come to know this verb more intimately.

“Oh, Lord, may you heal this boy of the evils in his body and deliver his pure soul to Heaven. And in your name we pray, Amen.” And with that, she withdrew her forceful embrace, leaving red marks of her love on Eiler’s temple. Her dark head nodded an expression of thanks to the family audience at the table, and with that, she left to continue her Christmas shopping. Eiler’s fingers fluttered in front of his face, dancing according to the grammatical rules of Sign Exact English. Eiler spoke no words, but as a seventeen-year-old teenager, he managed to put enough sass in his comments to have impressed the high school cheerleading squad.

“What was she doing? Was she having a seizure like me?” “Is she crazy?” The table erupted with silent conversation, exchanging words in gestures. My brother asked questions, my mother flung around insults, and my father chuckled through satirical comments.

Snagging Eiler’s attention, my fingers flashed: “Are you ok?”

“Yes,” Eiler signed, nodding his fist up and down. “But my head hurts.”

“Probably took a lot of effort to get the ‘evil’ out.” I smiled. “You are a rotten brother after all.”

Eiler rolled his eyes and hurled his napkin in my general direction, hitting our cousin Masha and her fistful of buttery pasta instead. Animated hand gestures and boisterous Buck laughter resonated along our table with new excitement.

We are so blessed to have others express sympathy for us, to remind us that my brother’s situation “must be terrible.” But we get so busy watching him play wheelchair basketball and perform in the band and receive honorable academic awards that we forget to feel sorry for ourselves. Eiler has never asked to be normal. And often we forget he is not considered normal. He is just Eiler to us.

The Origin

Family lore says Eiler came screaming into the world, flinging fists and flexing underdeveloped muscles. He was born with severely clubbed feet and a partially paralyzed tongue. The doctors called it polymicrogyria. Eiler’s brain has many small divots, which can lead to a variety of physical and mental differences. Finally, after seventeen years of frustrating moments and hilarious memories, the medical jargon begins to take shape. But the shape is not as clean and pristine as the doctors painted it to be; it is muddled with emotions and blood.

Over the years, surgeries have decorated his skinny legs and baby feet with white scars. Years of physical therapy and speech therapy have “enabled” Eiler to speak to some extent and to walk short distances. Rather than bending his knees, he swings one stiff leg in front of the other, resembling a penguin’s waddle. When we go to the grocery store or somewhere that requires Eiler to walk a longer distance, he uses his crutches to race down the aisle, searching for the perfect bouquet of flowers to buy for Mom. For a full day of school, he uses his wheelchair. The two small front wheels light up when in motion, signaling others to jump quick before their toes are run over by a madman.

When one has a partially paralyzed tongue, like Eiler, the processes of eating, speaking, and swallowing are not common or easy. Eiler is fed through a g-tube, or gastronomic tube, which allows him to bypass the highly processed and tasteless cafeteria food at school. The process of swallowing becomes much more significant with a partially paralyzed tongue, as it demands greater conscious effort. Pools of saliva sit at the bottom of Eiler’s mouth and sometimes dribble onto one of my favorite shirts, ‘smegging’ me. The tongue is a useful muscle, but not necessary.

Besides the occasional uuuuugh or mmmm, Eiler cannot speak. However, he has found other avenues to express himself. One uneventful afternoon, my father and I taught Eiler some unsavory signs to pass the time. We realized our mistake when Eiler decided to show off his newfound knowledge at the next family dinner. The food grew cold after an hour of my mother’s ire. Eiler just smiled smugly.

Eiler came into this world with multiple titles to his name, a cold label for his disabilities. The doctors gave him multiple identities and scribbled them across streams of medical records. Eiler also came into this world with a toothy grin that paralyzes Dad’s anger and a sense of humor that requires no spoken words. It’s after years of sharing action figures, a dinner table, and a life with Eiler that I can say the doctors barely scratched the surface of his identity.

Santa

Christmas is Eiler’s favorite holiday. The promise of a mountain of toys and the daily screening of A Christmas Story are mere samples of the joy that coincide with the month of December. Every year we make the long-awaited trip to the local mall—with all the cousins squished into three cars—to take family pictures with Santa. One by one, we jump into the lap of Santa and loudly proclaim what we want for Christmas. And when I say jump, I mean my brother takes a flying leap.

As the eldest cousin, I was the first to go; around 2006, I lost the twinkle in my eye. My cousin Sasha went next, only a year after me. One by one, we all lost that spark of pure excitement, but defended the necessity of the tradition to honor those who still believed. Eiler never lost that spark. He is the last man standing. He is seventeen years old.

Every year, the facade becomes more and more difficult to keep up. One afternoon, I received a frantic call from my mother: “Santa works at our local Walmart! What are we going to do?!” We started shopping at Target. My parents and I recognize Eiler is well past the age of innocence, but something holds us back from telling him the truth.

When Eiler was fifteen years old, and I was back from my first semester of college, I broached the topic with my mother. I gave her the ultimatum: either we tell Eiler, or someone less forgiving will.

“Fine,” Mom said. “You tell him.” The answer struck me like the plastic sword my brother got from Santa two years ago.

“I just don’t want him to be crushed. If we tell him, we can do it in a way that will let him down easy.” I carefully continued to use ‘we,’ hoping my mother would take the hint. This was clearly not my responsibility.

“Fine, then you can tell him.” The soft wrinkles around my mother’s mouth grew rigid. “I’m not going to be the one who ruins his favorite time of year.” It was the response I had been dreading.

We were standing outside of Eiler’s room. His door stood slightly ajar, but he didn’t catch a single word of what we said. His head bobbed up and down to the beat of his favorite showtunes from West Side Story. Even through the partially closed door, I could hear the harmonious chorus blaring from Eiler’s headphones. He hummed along to the music, pushing forth a deep rumble from his diaphragm. A paralyzed tongue never stopped Eiler from singing. He was in his own world, sitting on the floor of his room.

All I had to do to shatter his reality was march in there and thrust the words in his face, maybe give him a hug afterward. But the secret had to be ripped off like a Band-Aid. My feet shuffled to the edge of the carpet floor of Eiler’s room. I pushed the door open slowly. He was right there. But did he have to know? My mother’s words played over and over in my head: “his favorite time of year.” If I told Eiler, I would be the one to crush him. I would be the big, bad sister who ruined Christmas. I would be worse than the Grinch. And there would, of course, be tears. Hundreds, possibly thousands of tears. The reasons mounted on top of each other one by one until I whirled away from the door.

“Couldn’t do it, could you?” My mother’s smug question greeted me as I returned defeated.

“It’s just … you know? He’s my little brother,” I weakly justified. And that was the end of the conversation.

Eiler still believes in Santa Claus. He is seventeen years old. And I’ll never tell.

Tony Stark: Iron Man, Millionaire, & Playboy

My father has never been known for his sense of timing, but we know he means well.

It was a Thursday night, and Mom had made risotto and chicken sausage with a large blueberry salad as a side dish. I passed the platter of meat to Brooke, who worked for us at the time. Brooke helped Mom around the house with the daily chores and with my two special needs siblings. She helped shower my sister, told Eiler to do his homework, and if there was a weird rash on my sister’s butt, Brooke would help take care of that. Brookie was “awesome” according to my mom, “really cool” according to me dad, and “beautiful” according to Eiler. An extension of Brooke’s “awesomeness” was her boyfriend, Gavin. He was the older brother that Eiler so desperately wished for. He was the friend Eiler could wrestle around with before dinner, to exhaust his hormonal teenage energy.

The table had been set, the prayer had been said, and Dad had jumpstarted the conversation. “So, Gavin, how’s work?” “How was your day, Emmy?” “Played some golf today.” Somehow we jumped to the subject of sexual education. And then all of a sudden it was out in the open: Eiler needed to learn how to “have some alone time.” The link of chicken sausage on my plate suddenly seemed extremely unappetizing.

“Oh, come on. All teenage boys do it. I did it. Gavin did it. Right, Gavin?” Gavin sat there paralyzed by my father’s words. There was really no good response to this question. The silence only prompted Dad to continue. “This is an important thing to discuss. If Eiler doesn’t learn, he could experience some serious effects, like blue balls.” I choked on the blueberry that was in my salad.

Eiler sat there at the dinner table, feeding himself with his g-tube. Large, blank blue eyes followed the conversation. He listened, but never signed a word. I wondered what was going through Eiler’s mind at this point. I really hoped he didn’t try to sign “blue balls” any time soon. His elbows rested on the table, bulging biceps stretching his Nike dry-fit shirt. Little brothers are not supposed to have bulging biceps. They are supposed to be cute and to always agree whenever you bring out the red nail polish.

“Hey, what if we bought him some kind of lubrication?” Dad posed the question to the frozen table. “It might ease things up, if you know what I mean.” I would have laughed, had I not been squeamish by an uncomfortable image of my brother.

Eiler jumped in. “What are you talking about?”

“Well, buddy, you know how you are always going to the bathroom, but you can’t pee? We think your body is telling you that you need to do something else,” Dad so eloquently pointed out.

“No. I just need to pee,” Eiler replied, giving his g-tube to my mortified mother to fully engage in conversation.

“Remember how Mommy and I told you about private time? Well, we think you need to do that more.” Dad kept going. “And I think it’s time I probably gave you some tips on how to get the job done.'”

“Alex, maybe this isn’t the best time to talk about this,” Mom finally butted in before Dad launched into uncomfortable detail.

“Eiler is a teenage boy. He’s got to deal with this.” Dad drove the topic home, asking, “If we don’t educate him about this, who will?”

What was odd was that, until my father said it, I had never regarded Eiler as a teenage boy. He was my little brother, a great kid, a funny guy. But a hormonal teenager? Nope, not part of my list of adjectives. I thought Eiler would skip the awkward stages of self-discovery. But he was a teenage boy.

Eiler talks about marriage. He talks about having kids. He texts the girls at his school more than he texts me. The action figures in the corner of his room look odd next to the assortment of football and trophies. I had shielded myself from the signs of maturity, fearing the approach of reality.

Mom took the conversation by the bullhorns with a classic Texan distraction: “How about them Rangers?” The dinner carried on, resuming the normal exchanges and jokes. We eased into comfortable interactions and proceeded to stay on safe topics throughout the evening. But when I cleaned up the kitchen after dinner, I noticed a surprising amount of chicken sausage left over.

Halloween

The bales of hay lined each side of the trailer, forming a row of prickly benches. My Aunt Ro had attempted to ease the itchiness by placing pool towels over the blankets, but the persistent straw punctured the material and our costumes to stab our butts as we rode around the neighborhood. The Buck clan doesn’t just trudge around the neighborhood streets, collecting candy on foot on Halloween night. We rent a trailer, hitch it up to our sporty blue minivan, stack up some bales of hay to sit on, and drive around, filling buckets of candy. With the trailer, we no longer had to push Eiler up the steep hills of our neighborhood. We simply pick a brightly lit pool of expectant houses, hand off the crutches to Eiler, and follow the echoes of other sugar-greedy children. Our rambunctious cousins don’t complain about our mode of transportation because the trailer enables us to visit the best neighborhoods; namely The Pont, where ‘King Size’ is the standard for both houses and candy.

The month of October is full of anticipation and suspense. The children of a small suburban town outside of Dallas scour the local stores for costume ideas. They beg their mothers to buy that mask drooping with sadistic horror off the rack in the local Walmart. The same energy permeated throughout the Buck household, anticipation emanating from Eiler’s room. He doesn’t focus on the edible awards for the evening of the 31st. Instead, Eiler hones his senses to concentrate on assimilating every fiber of his being into his costume. The colorful clothing and masks contribute to the transformation, but the real work lies in the week prior. This is the time when Eiler recites every catchphrase, reenacts every scene, and practices every punch.

It came as no surprise that, in 2005, Eiler chose Anakin Skywalker. This year was not unlike any other; my mother had constructed a costume from the fabrics of our closets and the scraps underneath the pantry counters. Eiler was wearing a brown t-shirt, which was draped by brown pieces of fabric. My mom had bought a hair extension and braided it to make a rat’s tail to match Anakin’s. And in accordance with past imaginative creations, Eiler’s crutches were fashioned into light sabers. Each crutch was masked over with neon construction paper, transforming the walking devices into weapons of danger and destruction. (Although, I would like to make the argument that Eiler’s crutches are inherently tools of destruction. The bruises that line my shins painfully prove this.) That year I knew better than to tease Eiler and engage him in a friendly sibling “fight-to-the-death.”

We pulled up to our first street, halting at the end to let everyone scramble out and find the first house with light flooding the porch. Eiler and I trudged along after all our greedy, sugar-high cousins. We took our Snickers-sweet time; we knew the deal and had it down. I adjusted the green paper-boy that I had worn for my Luigi costume. The dynamic duo was about to take Highland Village by storm.

The first door opened, and the friendly neighbor smiled down at the collection of youthful costumes. He paused to ponder what the hell my cousin Masha was wearing: a long Indian headdress with alternating red and yellow feathers crowned her ten-year-old head. A bloody zombie mask—a mask one might find in the horror section of the local Halloween store—covered her expectant smile. A karate belt, tied around her skinny waist, completed the eclectic costume. According to Masha, she was a Zombie-Indian-Chief, but where the karate belt factored in was unbeknownst to all, including Masha.

When Eiler finally crutched his was to the front door through the crowd of cousins, he flung out his bucket proudly, balancing his body weight on one crutch. His two front teeth jutted out from his sweet grin. Modeling the role of a proud sister, I stood behind him, placing my hands on his shoulders to support him. Picture perfect image. The neighbor stuck his hand deep into his bowl of candy and brought forth mounds of delicious goodies: Snickers, Butterfingers, lollipops, Nerds, and some other read gummies in clear packaging. I wickedly reminded Eiler to sign “Thank you” to the neighbor, who then rewarded us with yet another handful of sweet goodies. The pattern continued for every house. Eiler would smile, wave around his lightsaber, sign “Thank you” sweetly, and receive large quantities of packaged sugar. But there is a secret behind each show we put on for every festive door: Eiler can’t eat candy.

Every October brings a new set of costumes and a regrettable stomachache. My memory trails through the past and sifts through the innovation of each character: Anakin Skywalker, a Transformer, Batman and Robin. Eiler puts on a show each night, spending a few hours behind the stitches of another face. But despite the shocking resemblance of each imaginative construction to its original design, each character wears a distinctive toothy grin and there is always a shred of ‘smeg’ on the left shoulder. Somewhere, amidst the array of colorful masks, is a boy named Eiler.

 

Emmy Buck was born and raised in the rolling plains of Texas. She moved to Washington, D.C. , to study English at Georgetown University and has continued to use her liberal arts education to pursue her love of writing. On a particularly muggy afternoon, Emmy searches for the best glass of sweet iced tea on the East Coast. In 2015, this piece received the Bernard M. Wagner Medal for excellence in creative nonfiction writing. 

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1 COMMENT
  • Katie Birdwell / December 17, 2016

    As always, Emmy’s storytelling ability knows no bounds. What a fantastic gal…sister…daughter…friend.

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