How to Clean a Permanent Stain

So, I wrote this story. It’s fiction. Ish. The important bits are facts, but of course, ‘important’ is subjective, and so, you know, I’ll let that area remain murky. It’s a work in progress, as most things are, but I’ll keep at it and maybe get someone to illustrate it, and see if, together, we can’t take it someplace better.

My parents loved to begin their responses to everything with, ‘At least…’ which was not only often funny, but also an optimistic approach that managed to leave reality intact and uncompromised. For example, my younger brother, Sam, was always and forever wanting to play with me and my friends — dress up, dolls, coloring: anything. He wanted in. I wanted time with my girlfriends so we could do fancy, special, things and pretend like we were grown up. This meant that after we tired of dressing Sam up in baby clothes and strollering him around the house, there wasn’t much of a role for him in our activities. My solution was to promote him to mailman. He could drop letters off every once in awhile, and we’d be left in peace to drink pretend tea and discuss the cost of jelly beans.

Of course, Sam immediately saw through this ploy and went to clarify the issue to Mom post haste. She listened amiably for a while, then said; “At least you get to be mailman, right?”

Sam hadn’t thought of it that way, and decided that when you finally get invited to the party, you don’t complain about the costume requirement. Thusly, my friends and I were the recipients of some of the most intricate and detailed faux letters and packages in the history of make-believe.

The ‘at-least’ approach to life instilled a sort of gritty, quirky, optimism in my brother and me. It colored our characters and personalities with a perpetual chirpiness that made life beautiful for us and probably annoyed everyone else to pieces. I’ve often wondered if my tendencies towards anger and frustration stem from being lucky enough to have avoided those things almost entirely when I was younger.

Kayl moved into my perky bubble life when I was six. His family appeared one Saturday morning during a wretchedly hot August in a long, yellow truck. They rolled into the driveway of the sprawling, green, Victorian three houses away from mine, on the other side of the cul-de-sac.

It was still preternaturally early for my family. Mom and Sam were just finishing the latest segment of the Potty Training Experience — an event that inevitably ended with a pull-up diaper, an unopened, un-earned, Star Wars figure left to gloat on the sink, and no poop in the toilet. Dad was in the middle of making faces and funny hair-dos in the mirror while singing nonsense words and asking me if I knew what he was talking about. I typically struggled to remember all the freshly invented words so I would know them for next time, simultaneously giggling hysterically and shouting irritably whenever Dad tried to sculpt my lengthy mass of brown hair into one of his made-up animals. On this particular morning, however, I was peering out of the bedroom window at the new family hefting boxes and furniture into their soon-to-be home.

Mr. and Mrs. New Family unloaded their two kids from the front of the truck and ushered them into their new house with a quiet speed that left me wondering if I’d really seen anything. I thought maybe there was a boy with curly hair and a toddler in a dress, but even that was a rough guess and warranted a frustrated stomp to Sam’s bedroom where Mom was helping him pick out shoes.

“How old are those kids?” I asked.

“What?” Mom eyed Sam while he matched up a rain boot to his gym shoe, and managed to throw me a confused eyebrow tilt.

“Oh come on! Those guys moving in! Who are they?” That my parents weren’t given prior notice to all things that happened to strike my interest, up to and including the arrival of a new family on my block, had not occurred to me.

“Don’t know, Asa. Why don’t you go say hi and then you can tell us?”

“Well, because that would be weird.”

“I think it’s weird that you want to know who they are without even saying anything to them.”

“Asa’s weird!” Sam laughed hysterically while running around the room in a Thundercats t-shirt, pull up diaper, rain boot, and sneaker.

I heaved an exasperated grunt at my brother and trotted out our front door to say hi to New Family.

I crossed the oasis of our cul-de-sac quickly and found myself frozen in front of the yellow moving truck. I stood at the start of their sidewalk and wondered if New Family would take kindly to a random kid in fuzzy purple pajamas on their porch. I had half changed my mind about saying hi when a boy in brown corduroys and a blue polo shirt ran out of the front door and onto the steps to his porch. He had a gigantic swarm of curly black hair tumbling across his forehead, and translucently pale skin. His face was covered in red sauce.

“Spaghetti?” I guessed.

The boy laughed and said, “Yeah! Mom told Dahlia, my sister, that we could have dinner for breakfast once we got to the new house.”

“Oh.” I shrugged, smiled, and said, “I’m Asa. I’m six.”

The boy smiled back, revealing two missing front teeth and said, “I’m Kayl. I’m five, but I’ll be six in a month.”

Kayl picked up a rock from one of the stairs, skipped down to the sidewalk, and scratched a long line into the cement near my purple slippered feet.

He looked up at me from the gouge in the ground and said, “You have to mark these things.” Then he turned and ran back into the house, leaving me to stare blankly at the scratch. By the time Kayl’s sixth birthday had arrived, he and I were best friends.

Aside from the obvious bonding over our mutual love for the original Star Wars Trilogy, Double Stuf Oreos, and The Prydain Chronicles by Lloyd Alexander, Kayl and I had very compatible families. Dahlia adored Sam; Sam enjoyed making someone else be mailman. Our parents adored each other, and because Kayl and Dahlia’s half brother, Jake, was a senior in high school and adored making extra cash from babysitting, Kayl and I not only spent our recesses, lunches, and after school time together, but nearly every weekend night as well.

My memories of our friendship before everything changed come to me in spotty, unraveling, blotches where the center of the blotch is clear and intact and everything surrounding it is murky and elusive:

We both started violin lessons the year we started first grade. Although I quickly fell in love with my instrument and all the things it could do, Kayl soon realized he’d rather drink paint than spend five minutes practicing. He had no issues with listening to me practice, though, and our after school time merged into me practicing while he listened and did his homework. He would then help me with my homework, and, if there was any time left, we would build Star Wars spaceships out of Oreos, devouring them completely only after the other had guessed which specific ship it was.

Kayl’s mom had told him that important things needed to be ‘marked.’ I think, in retrospect, that his mom was probably referring to a mental marker, but Kayl was far too literal a kid for that description, and honored his mother’s advice by scratching our sidewalks anytime anything big happened to us. Not long after our initial meeting scratch, a ‘Now We Can Do Division Scratch,’ ‘Asa Memorized Suzuki Books 1,2, and 3 Scratch’ and ‘Kayl Built His First Robot Scratch’ followed. Once, when Kayl had had a particularly frustrating day, a ‘Jake’s the Meanest, Smelliest, Older Brother in the World Scratch’ was angrily scored into the ground, and, at my prompting, a ‘Sam Smells Too Scratch’ marred the concrete next to it. Kayl and I looked at those scratches and laughed till we ran out of air and Kayl had forgotten why Jake smelled.

Kayl’s first robot had two functions: forward and backward. He liked to use it to destroy his Oreo ships before I had time to eat them. It would have upset me had his robot’s wheels not been so easily clogged with Oreo goo. Kayl would frantically try to unstuck his creation’s gears while I happily demolished his Oreo ship and gleefully licked up all the filling from the stolen, dismantled, ship parts.

When I started to lose weight, it was already weeks after I had turned into a sleepy, thirsty, shadow of my former self. The nearly imperceptible commencement of my body’s betrayal probably started during the summer before 4th grade, when I was nine years old. By the time school had begun that fall, my parents had been told by four different pediatricians, including our own, that my body just needed time to fight off the virus. At the completion of the third week of school, they had received complaints from all my teachers about my lackluster participation and ever-more-frequent class-time napping.

Kayl and I completed our biggest, most extravagant, Oreo cookie ship in our history on the Saturday two weeks before Halloween. It covered nearly half the dining room table and rose for several inches off the surface with nary a wobble. We’d used two entire packages of Oreos — way beyond our paltry daily allotment, completely disregarding our imminent demise. And we knew our demise: the last time we’d been punished for excessive Oreo use, we’d had to build ships out of carrots for a week. It was awful.

As we put the finishing touches on our masterpiece, he suggested that we take turns picking which parts of the ship to eat first based on which parts we liked best. I shrugged and told him he could have it all because I wasn’t very hungry.

“You’re not hungry? For Oreos? You? …Aren’t?” Kayl stared at me from under lowered brow. He looked at my empty water glass and then back at my face. My Oreo refusal appeared to have pushed a sort of befuddled resentment button of his; a secret one that he didn’t know he had and couldn’t figure out how to unpush. He said,

“You’re just going to drink water all day? You might as well just go live in the bathroom.”

“Well, I don’t want Oreos, and you know what? I AM going to have another glass of water!” I glared pompously at him, and stomped off to get one. When I came back, I saw that Kayl hadn’t touched the Oreo ship. It rose from the table with crumbly black and white belligerence, and I winced from the sting of its unspoken judgment. Kayl glowered at me while I gulped down the entire glass in three big swallows.

“You’d think with all that water, you wouldn’t look like such a skeleton.”

My jaw dropped in wounded disbelief. Kayl pushed his chin out in vehement Anti-Apology, and I, with no other rebuttal to offer, balled my fists and scrunched my face. In a burst of embarrassed hurt, I flung my boney arm at the Oreo monstrosity and sent cookies flying everywhere. Kayl jumped up and ran out of the room and my house, while I yelled after him; “How’s THAT for a skeleton?? Huh?!”

Then I tried to run to my bedroom. But on the way there, the world spun away from me, and I collapsed, the effort of keeping the ground under my feet too intricate and physical a task for my shriveled body. I lay in a crumpled, half-conscious, heap on the floor, until my mom found me mere moments later. I was rushed to the ER where the nurses told my parents that, at four feet, five inches tall, 32 lbs was excessively malnourished. There ensued a rather heated exchange (aka scorching rhetorical lecture) as my mom detailed all the ways in which the medical field and its ‘professionals’ had let her down, and expressed in minute detail every example of responsibility being an obligation for the general populace, but particularly for those in this group who professed to be experts. I passed out just after a mental unclench of relief that I was in no way a part of said field or an expert of any kind.

The intensive care portion of my hospital stay is fuzzy and incomplete; I can’t remember the first two days at all, and the rest of my time there is a loosely strung together chain where each link equates to roughly twelve seconds. I have the vague sensation, still, of being told things that I eventually understood as my diagnosis. That said, I can’t remember the precise moment the endocrinologist told me I had Type 1 Insulin Dependent Diabetes, and now I wonder if that was already foreshadowing my mental acclimation to the idea. I learned afterwards that my blood sugar was in the upper eight hundreds when I arrived, that I couldn’t eat or drink, and had to be fed intravenously for the first few days after I was admitted. I remember the catheter, though, and how I yelled at the nurse inserting it. I also remember that the first time I tried to use the bathroom on my own, I had to use a walker, take three rest breaks just to get there, and another two on the way back.

When I was moved to the regular in-patient care facility, I was just able to eat actual food and allowed short visits from immediate family. I had hour long instructional lessons from the endocrinology team, the only portion of which I can accurately recall is my inability to last through the entire lecture. I can’t remember anything anyone said during those days, but I remember that my dad gave me Haroun and the Sea of Stories to read and my mom brought me gourmet buttered popcorn for a snack. Although I can’t remember the exchange, I can see the book and popcorn tin on the table next to my hospital bed, and I know that memory is real because those two things have been my favorite sources of comfort and peace ever since.

The doctors put me on an injection routine while I was in the hospital. I was, several weeks later, able to upgrade to an insulin pump, but the doctors felt that due to my age and their desire to make me understand how my body responds to my sugar fluctuations, and the insulin it needed to control those fluctuations, it was better to start me on a regime of six to eight shots a day. They were old school and thought, without reservation, that it was better to fully understand exactly what a pump does, and more importantly, what the patient needed to do to make it work, before subjecting the patient to its care and control.

The insulin shot extravaganza was closely followed by the nurses’ brilliant notion of teaching my parents how to give me an injection, too.

“Why?” I asked, because clearly the idea was wrong on many levels.

“What if you can’t give yourself a shot, honey? Someone has to.”

“Why would that happen? I just gave myself a shot. You saw me.” It’s possible that my attitude towards the nurses was eight shades of bitter.

“It’s better to be safe than sorry, Asa.” The nurse handed my parents syringes filled with saline solution. I watched them poke and inject oranges for several minutes, while I grew increasingly concerned about the severity of the fiasco. The nurse gestured towards me, indicating that it was my turn to be the orange. Mom went first and jabbed that needle into my arm with unprecedented deliberation and quickness. She was done before I could comment, and completed the task without having glanced at my face at all.

Dad stood on the other side of me, holding his syringe. I looked at him, expecting him to be even quicker than Mom. He stared straight into my eyes for several pronounced moments before sticking the needle into my upper arm. Then he froze, fingers on the syringe, needle in my arm. I stared at the metal lance in my flesh, the wail pouring from my mouth and breaking against the edges of my lips; “Just do it, Dad!”

My dad pushed the plunger in seconds before I ripped the syringe from his hand. Then he cried, quietly, the tears slipping down his face in a silent, slippery, agony that made me hate myself. My dad never cries. The entire event lasted a moment, maybe two, but the replay in my head is timed according to pain and the scene stretches across my childhood and into my present, its temerity and clarity outmatched only by my willingness to remember it.

Due to being nine years old and of a mind that categorizes events very strictly, I was still mad at Kayl for his skeleton remark when he came to visit me. His being right did little to assuage my hurt. Nor did his knowing that he was right ease us back into friendship;

“You look better.”

“Really? Oh good, because I’ve just been sitting here waiting to hear that all day.” I stared at him icily from my bed, indicating that he was free to go now that his most informative message had been delivered. Kayl, being not only accustomed to my snark, but also something of a snark monster himself, glared back and said,

“Well, God forbid your tongue should ever lose weight!” The remark caused my dad to belly laugh and sent his mom into immediate cascades of chastisement. I eventually smirked at him, unwilling to forget, but in grudging agreement that my tongue was in fine health.

Kayl stood next to my bed and stared at his feet. I felt awkward and tired and devoid of sentences. The sticky quiet held for several moments — until Kayl jerked his head up triumphantly and told me;

“Mrs. Schooner made us look at dead bugs today.” He grinned smugly at my disgust, and added, “They were mostly beetles, but then she brought out live hickory horned devils.”

“What are those?” I imagined a giant beetle with multi-tiered wings and fangs, its giant, glistening, horns curled over bajillions of teeny tiny eyes.

“Well I guess you can’t really see them too easily unless you know what to look for…” Kayl paused contemplatively, which gave me plenty of time to panic;

“What are you talking about? Where are they??”

“Oh, they’re everywhere, Asa! They’re hard to see because they curl up and look like bird droppings, and they have huge black and red horns. Lots of them. Then they turn into moths.”

“Oh my god, you just made that all up.”

Kayl spent the rest of his visit convincing me the Satan-caterpillars were real, and I spent the rest of it maintaining a healthy scoff. It was one of the last untainted conversations Kayl and I ever had.

Diagnosis is a multi-layered word. The time you have in the hospital is a slap in the face, but it’s nothing compared to going home and having to carry around that diagnosis without a team of nurses and doctors to hold your hand at every moment, all the while living the rest of your life like nothing has changed. I was (and still am) a stubborn kid with a primarily black and white understanding of the world. I took to my diagnosis like a cat on a leash: anger with a side of thick, stone, wall that prevented anything from getting past the anger.

Watching my parents and Sam get through my diagnosis did nothing to alleviate my anger. I would walk in on Sam eating his afternoon snack (goldfish crackers, juicebox, and cookie of choice) with Dad and they’d both just stop eating and stare at the table. I’d stomp out. I once caught my mom sobbing on the back porch while my dad held her, promptly assumed they were upset because I was a lost cause, decided there wasn’t any point in being healthy anymore…and stomped away. I got mad at all the sugar free options Mom bought for me (Jello, pudding, gum, Canfields Chocolate Fudge Soda…), got mad at Mom for controlling me, and then…stomped off. I didn’t know that I was angry because I felt helpless, so my anger always switched targets. I knew being mad about having diabetes was silly because it wasn’t going to go away, but for some reason, all that logic didn’t make me less hurt or less furious.

For many months after my diagnosis, Kayl and I didn’t hang out as regularly. I thought, for a long time, that my mom had told his mom that I wasn’t ready for social events — which, of course, just made me angrier. But now I think his mom might have wanted me to have some time to adjust, and maybe she wanted Kayl to understand what was going on, too. Either way, the few times a month that we did see each other were stilted and uncomfortable at best. I was too angry to see our time together as anything other than another vehicle for my rage, and too overwhelmed with impotence to articulate myself in ways that weren’t destructive.

When Jake started picking Kayl and Dahlia up from school and taking them home, I assumed it was because we were no longer best friends. Kayl’s occasional homework time with me had long since become a silent, irksome, affair: he would make a comment about the silliness of one of the questions, I would ignore him because I thought his ploy to not address the obvious (diabetes, how it ruins everything, hello) was mean and selfish. I would later make a comment about how math was only good for carb counting, and he would ignore me to even the score. Which I would then take personally. So on and so forth.

A few weeks after Jake started picking Kayl and his sister up from school, Kayl came over to work on a group research project with me (we were inevitably the two kids in any group project who could be counted on to do all the work). We began our routine with our typical stodgy silence, but when Kayl broke it, he said,

“Dad moved out.”

“He…why? Why did he do that?” My parents fought all the time: they yelled, they stomped around, they threw things, they made up and that was that. To me, fighting was not a reason to leave, and I couldn’t picture anything more serious happening, shy of one of them passing away or maybe being abducted by aliens.

“He says it’s better this way. But Mom says it didn’t have to be that way, that everyone makes choices that have repercussions. I don’t know.” Kayl looked so sad that I forgot about my own sad life for two seconds and really saw my friend. He was pale, his eyes had sunk deep into his cheeks, his lips were quivering (Kayl??), and he wasn’t doing anything with his hands. They just sat there on his lap like dead fish. Kayl was always moving his hands — building things or writing things or fixing things or tapping things.

“Well, when will he come back? Is…” I hesitated, looking at Kayl’s face of woe, and finished softly, “…he going to come back?”

“I think it’s divorce. My parents are getting a divorce.” His lips formed the words like he’d practiced them in his head a hundred times, but still didn’t really know how they were supposed to sound. “We spend every weekend in the city with Dad, and the week days with Mom, here. But, that’s not family. I don’t know where my family is.” Kayl looked, at that moment, the way I’d felt for the last several months, and I knew he’d never come back: some stains are permanent and their pain just becomes part of who you are.

Our homework time was easier after that; I knew why he was sad, and he was too sad to be fazed by my trigger-happy irritability. We were able to find a melancholy rhythm that enabled us to feel comforted in our loneliness, one that never actually addressed our miseries. Life moved around us, and we acquiesced. I went from being rageful to sullen and indifferent. Kayl turned into something akin to one of his creations; a stiff automaton of a boy, programmed only to respond to direct input.

Because of our combined (and thusly strengthened) proclivities towards emotional disconnection, I was vastly unprepared for my parents’ next attempt to help me cope. Several months prior to my eleventh birthday, my parents piled Sam and me into the car and started driving. After completely ignoring our demands for information, while exchanging smirky sideways glances and several completely transparent cough cover-ups, Sam exploded,

“A DOG!!! We’re getting a dog, it’s a dog, a dog, a dog!!!”

Sam and I had only been whining about our lack of dog since our fetal conditions expired. The likelihood of us ever getting a dog had, to Sam and me, long since become close to nil, but the whining and begging and bargaining were like old pajamas that were too threadbare to keep you warm, yet too symbolic of sweet dreams to be thrown out. I stared at Mom and Dad for a split second, during which I fully grasped their happily caught expressions, and joined Sam in blissfully unfettered shrieking all the way to the SPCA.

We spent less than 15 minutes visiting all the dogs at the shelter. There were dozens of animals, but the second I saw the black and white spotted Lhasa Apso mix with his happy, curled tail, silky black ears, and sweet, gentle, eyes, the audition was over. Sam was still so completely in ‘I can’t believe we actually get a dog’ shock, that he let me name our dog without even flinching. I thought for a moment, and came up with the one character in all the books I’d read, all the music I’d heard, all the movies I’d seen, that could never be angry. I named him Papageno, after the goofy, feathered, character from Mozart’s opera, The Magic Flute (which happened to be my favorite piece of music of all time, but, you know, moving on). The name was just long enough to be funny for such a small dog. His feathery fur, awkward gait, and obnoxiously gentle nature tied him to his namesake forever.

I hadn’t felt so light and at peace in a long time. While my parents stood at the counter, signing papers and paying for Papageno, I held the little furry in my arms right behind them and let him rest his head on my shoulder. As my dad turned to attach his leash to his collar, I heard my mom ask how old he was.

The lady behind the counter said, “Well let’s see, he was born on October 19th, 2011. So that makes him…about one and a half?”

As soon as I heard that, I lost my fragile grip on peace. October 19th, 2011. The date I was diagnosed. I put Papageno down and backed away from him. I could feel the muscles in my face go slack, and my chest hitched with the weight of my returning anger and resentment. I glowered at the dog (who was sitting in front of me, wagging that long, furry, tail, waiting for me to pick him up again), and hated him for having been brought into this world on a day when my freedom and independence had been stolen from me. I hated that he had been happy his entire life — a life which, from its very start to this very second, encompassed all of my misery. I turned my head away, ignoring my parents’ dismayed eyes, and went to wait for them by the car.

We rode home in lopsided silence: I gazed stonily through the window glass while Sam cooed and burbled noises at Papageno, who bounced up and down in his crate, occasionally unleashing little happy yip sounds that made my entire back recoil. Mom and Dad were quiet, holding hands across the divide in between their seats. As we neared our neighborhood, Mom turned over her shoulder and said to me,

“At least you can-“

And I lost it. I punched the car door with my fist and shrieked, “At least NOTHING! NOTHING, Mom! Nothing takes any of this away! Nothing makes this better! Why would you ever even understand ANYTHING?”

Mom hid her sad, scared, eyes from mine while Papageno whimpered and crawled under the blanket in his crate. Mom finally looked back at me again, her face flat and hopeless, and said,

“You can’t clean a permanent stain with just water, Asa.” Then she turned around and nothing more was said. Even Sam was silent the rest of the way home.

I spent the next few months ignoring Papageno. He would wait for me every afternoon by the front door, wagging his tail and jumping on me the moment I opened the door. I would push past him, trudge into the dining room, check my sugar, get a snack, bolus (give myself insulin), and sit sulkily at the table eating, while Papageno positioned himself at my feet. He slept on my bed every night; I curled up in a little ball so no part of me was touching him. He waited for me outside the bathroom door every time; I stepped over him. He sat next to me on the couch when I did my homework, he greeted me every morning with a giant sloppy lick on my face, he cried when I left for school. I pretended he wasn’t there. His oblivious happiness was worse than perpetually bad blood sugars, and I didn’t need one more thing reminding me how everything sucked.

I did, however, find time to harp on my mom’s comment regarding the stain. First, what stain? Second, water??? Third, why did I get stuck with clean up? Wait, clean WHAT? I thought she might have been referring to the responsibilities of pet ownership. But poop washes out — I knew this due to several stomach-curdling experiences with a neighbor’s pet cat that I’d watched for a weekend. So, that was out. Then, I thought maybe she meant me being mad at Papageno…she was always saying how silly and regressive blame is (which was frustrating when, clearly, Sam had messed something up and needed to be held accountable), so I tried, for a while, to figure out how me blaming Papageno somehow stained something. It crossed my mind that maybe being angry at a dog was silly, but I didn’t let that inconvenient bit of clarity stop me.

In the meantime, Kayl seemed chirpier. He showed up at my house smiling, laughed off most of my unwarranted snark, and, at one point, brought sugar free Oreos so we could attempt to beat our previous record. He even persisted in building it after I’d lectured him on how most sugar free products aren’t really sugar free. I thought maybe he was getting used to his dad being gone, and wondered how he’d managed to be ok with that.

Then, after we’d finished our Oreo ship (the experience was kind of disappointing — apparently Oreos aren’t really versatile building tools, who knew), Jake came to pick him up. Kayl used to just walk home, but it was Friday, which meant he was going downtown to stay with his dad for the weekend. Usually, when Jake showed up, Kayl would stall packing up his backpack, ask for another glass of water, need to use the bathroom, and generally cause shenanigans for as long as possible, until Jake lost his temper and demanded that Kayl knock it off and get in the car.

This time, however, Kayl’s face lit up. He raced to his backpack and began shoveling things in there as fast as he could. I stared at him for a second, then asked, “So…is something big happening today?”

Kayl’s face erupted in grins as he said,

“Yeah! Jake’s going to take me and Dahlia to his Tae Kwon Do class. He just got his second dan black belt, so he wants to show us what he has to do for his next competition!”

I nodded and said, “Oh! Ok, well, have fun!” Kayl waved goodbye and raced out the door.

In the days that followed, I noticed all sorts of differences between Kayl and Jake. Jake, despite being in college and having (from all accounts via his mom) a ridiculously crazy schedule, would show up early to Kayl’s science presentations and competitions, and sit with him while he waited to be evaluated. He managed to appear when Astor approached Kayl after school one day (Astor was, and quite possibly still is, the meanest girl I had ever met — No One bothered Astor, unless you craved pain and possibly dying from said pain). Astor took one look at Jake and slunk off without a word or backward glance.

Kayl was, suddenly, the best possible Kayl when Jake was around. When Jake teased him, he didn’t respond with a sentiment regarding what happened to Jake’s last girlfriend or how it wasn’t actually a rule to smell so bad; he laughed and rolled his eyes. Jake taught him some of his Tae Kwon Do moves and I spotted Kayl teaching them to Dahlia a few days later. Kayl let Jake help him with homework, and looked forward to seeing him after school. Somewhere in his parents’ split, he had learned to do more than love his older brother because he had to: he had learned to trust him, to like him.

I saw Kayl’s happiness return with a sense of disconnected awe. I realized that Jake had taken away Kayl’s pain by letting Kayl be his worst self until there wasn’t anymore bad left. I knew Kayl still missed his dad, and that it hurt him to not have his family all in one place. But somehow, Jake had found a way to clean away the ugliness that came from Kayl’s hurt. Trusting Jake had allowed Kayl to accept his hurt without becoming only his injuries and nothing more.

That spring, Kayl went with his siblings and his mom to a family camping experience in Utah. My family wasn’t much for camping, and Dad had a big project at work that needed to be finished, so we stayed put. I spent most of it practicing my violin for a competition, but the closer the competition date got, the tougher practices became.

Two days before the competition, I checked my sugar early in the afternoon, expecting to be on the low side, since usually I ran low in the afternoons. 281! Not. Low. Bolus, drink water, go practice. Two hours later, I check again: 386. Mistake! Right? Totally. Check again, different finger, different hand: 394. Rage. I over bolused by about 80%, drank water, and tried to practice more. But I couldn’t focus, I felt nauseous, and my eyes kept blurring. All I could think about was the piece I hadn’t even started practicing yet that day, and how I was sure to mess it up in the competition. It was a full hour and a half later, but I knew I was still high. I checked anyway, hoping desperately that maybe my eyes were blurry because I was finally coming down: 417.

Tears soaked my face, my nose stuffed up, and I made weird sounds trying to breathe in between the sobs. I saw the judges laughing at me in the competition while I struggled to find the A string on my violin. I felt like all my hard work didn’t matter if a day of bad sugars could take away my ability to make the music I could hear so clearly in my head. I flung my glucometer at the wall (where, to my minor satisfaction, it shattered into a zillion pieces) and raced to my room, hurling myself on my bed. I let my wails shake my entire body, rending my pillow so harshly with my hands that the fabric tore.

When Papageno jumped on me, my first murky, wimper-riddled, thought was that he was finally going to chew my ear off because I had ignored him for so long. I rolled on my back and, weeping still, braced myself for a well-deserved mauling. He didn’t. He sat himself squarely on my chest and licked away my tears. Then he lay down between my side and my arm, with his head on my shoulder, and placed his paw very gently on my cheek. And he waited. He waited till my tears stopped, and my breathing had slowed. He waited till my hands unclenched and I was able to empty my head. I lay there with him for a long time, my hands resting on his furry back. It was amazing how clean my head felt after I’d wailed till there just wasn’t any more left.

When I finally got up to check my sugar again (about two hours later, and with the meter I kept in my bedroom), I was a pristine 102. My parents came home and found me curled up with Papageno on the bed. They didn’t say anything about the shattered glucometer or the torn pillow. I went to sleep that night without being angry or annoyed or frustrated. I just slept.

The next few weeks flew by in a blaze of lucidity and simplicity. Papageno developed an alarmingly psychic habit of barking when my sugar started to fluctuate quickly. He would sit on my glucometer when I was high. He waited with me while I drank juice or took insulin, and even, on occasion, woke me up if I dropped in the middle of the night. He made it easy for me to have to stop my day to take care of my blood sugar by having it be his day, too.

I stopped being angry. Lightly, easily, my rage slid from my soul and crept to a more desperate alley. The sullen veil lifted, and I could see my life, and all the people in it, with my own, naked, eyes: without a filter, and without history. I watched Sam measure out portion sizes of popcorn for himself, not because he had to, but because I did, and he wanted us to have the same. I saw that Mom and Dad danced around me, not because they didn’t trust me to take care of myself, but because they didn’t know how to help me be happy with myself. They surveiled me through sad, broken, eyes that were just as helpless as mine used to be. I finally understood that I was responsible for my health, not just for myself, but also for the people who cared so much for me that they would break if I couldn’t be happy.

I realized that Kayl still came over to do homework with me, even though I hadn’t really been his friend for a long time. He would show up, put up with me being sulky, watch me prick my finger without flinching, and never criticized my numbers. He made sure to drink water just in case we only had a few juice boxes left and I happened to need them. When I started to talk to him about my blood sugars, he listened quietly for a bit (probably in shock that I was actually addressing the issue) and then chimed in with vintage-Kayl, spot on, questions and comments that made me laugh.

When Kayl came over to listen to me run my pieces for the next competition, he brought me a package of juice boxes instead of his typical gift of my favorite rosin. Instead of yelling that diabetes wasn’t a joke, I laughed and said,

“What are you going to do if I win? Give me a watermelon?”

Kayl muttered something about how that wasn’t very practical and then said,

“Do they let you stop to check your numbers in between pieces?”

“No. I mean…I don’t know. I’ve never tried.” I shrugged, and added, “It would make sense if they didn’t though, right? They want to hear me play. Why should they make allowances for me that others don’t have?”

“Because others don’t have diabetes? And if they did, wouldn’t they want good sugars for their performance, too? Because it’s not an allowance? Because it’s not a ‘play by the rules’ situation, it’s a be decent situation? Because they won’t lose the value of music forever if you take three minutes to check, and you won’t hate yourself if they let you keep your sugars in line? It seems like an obvious win.” Kayl looked startled that so much had come out of him about the issue.

“I mean…it takes a long time to get my sugars to change, though, sometimes. It wouldn’t be just a three minute check if they were off. I can’t let them give me second chances that other people don’t get.”

“It’s not a second chance, and other people would get them if they needed them! You’re still you, playing. If you mess up the piece, it’s messed up. It’s not like you’re asking them to be ok with your mistakes because you have diabetes. You’re just telling them that in order for you to give them the very best that you have, you need to make sure your numbers are good. Or at least try.”

I couldn’t imagine prancing up to the judges and saying any of that, ever. So I just got my violin out and started tuning.

I thought about what Kayl said, though, as I warmed up. If I had to play while my sugars were off, then yes, obviously that would be annoying and bad. But I knew I’d never have perfect sugars all the time, and I also knew I’d never quit the violin, or music. So I had to let the bad sugar go; I had to do what I could, and not make it worse by being mad about my sugars. He was right; I was still me, playing. I could mess it up with perfect numbers or with bad numbers, but it was always going to be me playing, my music, my work.

I started my first piece without a hitch. About half way through, my sugars dropped. Speed dropped; the kind that makes you sweat and blink fast, and you almost convince yourself that no one would notice if you began moaning and retching while you fumbled through the rest of your piece. I thought about stopping, crying, and rage-inhaling a juice box. But instead, I kept going. I thought,

“It won’t be perfect, but I can do this.”

And so I did. I was annoyed by not feeling like I was in control; my vibrato was sometimes too fast and tight, I missed a shift, and I’m pretty sure I miscounted that one bar with the stupid, weird, rests. But I remembered what I loved about the piece, and pretended that the dizziness, sweating, and my inability to latch onto any idea or phrase for more than an incredibly fleeting moment, was just the way I was. I imagined that the way my sugars made me feel was a separate, distant, thing from the way I felt about the music, and clung to that idea till I finished.

When I was done, I lunged for a juice box and my glucometer. I was 32, the lowest I’d ever been. My hands were shaking and my hair was soaked with sweat. Kayl didn’t even notice me diving for my juice box; the second I’d finished the piece, he’d jumped up and run over to my music stand, saying,

“Wow, that’s a great piece! What is it? I haven’t heard you practice that before, is it new? Wow, Asa! I really liked that!”

Then he glanced at me, hunched on the couch, sucking on that juice box like it was made of friendship and love. He said,

“Whoa, you went low? Do you need more juice?”

I shook my head and focused on breathing. I felt bad that I’d let myself go so low. I knew I couldn’t risk doing that again, and it worried me that I would be in performances and situations where stopping wouldn’t be ok. I promised myself that I would make sure not to have active insulin in my system before playing, that my numbers would be in no way borderline before I started. I told myself that I would do what I could, that I would always attempt to be safe. I needed to believe that playing through a low blood sugar, even though I hadn’t played as well as I’d hoped, was still worth it. I wanted to know that even if diabetes danced on my will, I could still be me while it taunted in pointy stilettos and endless pirouettes.

Kayl sat next to me and watched my face crease in stress and worry. He said,

“You know, I didn’t know you were low. I just really liked it. You played like no one could take it away from you. It was good, Asa.”

***

Mom tried to tell me that in order for me to be happy, I had to do the work; I had to change. My anger and agony might not have been actual stains, but I had let them become penetrating forces that dictated all of my choices and behaviors. I’d tried to fix my anger by justifying it, by feeding it. Without Papageno, without music, my family, and my friends, I don’t know how I would have realized that the only way to heal a wounded soul is to love it, and never stop. I don’t know that I would have understood how some stains are cleaned, not with hard labor or relentless grit, but with soft opportunity and unhesitating acceptance.

I never got back to my chirpy bubble life. I got diagnosed with a disease that I didn’t cause, didn’t deserve, and didn’t want. But, I barely remember the flippant bliss from before my diagnosis because going through my first few years as a diabetic taught me more about what it is to be real than any of the contentment or pleasure I’d felt prior to that time. Diabetes taught (and still teaches) me how to love, how to live. I cannot express in a single thought, song, or gift, the complete gratitude and appreciation I have for the loved ones in my life who helped me get there.