Wish Upon

   Not long after I was diagnosed with diabetes, in the early months of the school year, I was invited to the sixth birthday party of a student in my kindergarten class. The details of the actual event are fuzzy in my memory, faded away into oblivion—I can’t remember whose birthday it was, or where the party was held, or what happened for most of the time that I was there. 

What I do remember is the party favor. It was a little clear plastic bottle filled to the brim with purple, pink, and silver glitter. The top was sealed off with a removable cork plug. The mom who planned the party went around the room giving each girl a vial of her own until we were all clasping them in our hands with the utmost reverence. 

“This is magic fairy dust,” the birthday girl’s mom told us in a hushed voice, like she was letting us in on the best-kept secret in the world. She angled her own bottle under the light to display the radiant shimmer to her awestruck audience. “That means you can make a very special wish on it, and whatever you wish for will come true.”

This dazzled us. We were all five, or freshly six, years old. We knew magic was real: we had seen all the movies, read all the books, and heard all the stories. What was so special was that we had never had magic of our own—it had always been reserved for the princesses who needed their beast to turn back into a prince, or their pumpkin to turn into a carriage, or their mermaid tail to turn into a pair of legs. Before, magic had always been controlled by an enchantress, or a fairy godmother, or even an evil sea witch. But now magic belonged to us, tucked into the center of our smooth palms, waiting to be unleashed into the world. 

I don’t quite know what the other girls wished for. Maybe some of them wished for dolls, or stuffed animals, or a tea set. Maybe others wished for a trip to Six Flags, or Disney World, or Hawaii. Or, maybe, some of them wanted a puppy, or a pony, or a unicorn. I’ll never know what they picked, but I’d like to think that my guesses aren’t too far off. The only thing I can say for certain is that I knew what I wanted my wish to be. I plucked the cork out, spilled the glitter into my hands, closed my eyes, and willed my wish to happen. 

Later, when I got home from the party, I couldn’t wait to show my mom and sister my new prized possession. More than that, I couldn’t wait to tell them about my wish. I knew that they’d be overjoyed when they heard about it. 

“Look,” I rolled the bottle around in the same way the mom at the party had, making sure that they could see every gleaming particle. “Look at this. It’s fairy dust. Magic fairy dust. That means that my wish will come true.”

They played up their interest, pantomiming shock and awe to appease my childhood wonder.

“What did you wish for?” my sister asked me, a playful smile on her face. Undoubtedly, she was expecting that I would wish for something similar to what I think the other kids wished for. I was a Barbie doll fanatic, and always had a running list of dolls that I dreamed about owning. She was probably prepared for a rambling spiel about the Magic of Pegasus Barbie, or Fashion Fever Barbie, or Beach Girl Barbie, or…

“I wished that I wouldn’t have diabetes anymore,” I told her, excitedly, still rolling the bottle around and waiting for the magic to kick in at any moment. 

I don’t think I noticed the devastated looks on their faces at the time. I was too lost in my fantasy—or rather, what I assumed was surely soon to be my reality. I was prepared for a life of no more finger pokes, no more strict diet, no more eating peanut butter crackers even when my stomach was so full it felt like it was going to burst open because I had to stabilize my blood sugar. 

  When reflecting on this moment about sixteen years later, my mom and my sister told me they didn’t quite know what they should say to a child naively trying to make a wish. They didn’t want to crush my delicate heart, to be the ones who had to rip away my childhood innocence by telling me that magic wasn’t real, and not only that, but my chronic illness was very much not going to go away because I wished on cheap glitter from the craft store. But really, they had no choice. 

My mom pulled me into her lap and did her best to break the news to me. Holding my hand tight in hers, she lovingly explained that the stuff in the vial was not magic fairy dust; it was just the same kind of stuff that I used when I wanted to make my artwork fancier while I was doing arts and crafts at the kitchen table. I could not wish away my type one diabetes; diabetes didn’t have a cure right now, remember? 

For hours I was inconsolable.

***

The first year after my diagnosis was a whirlwind. 

Due to my age, my parents carried the brunt of the responsibility. They diligently checked my blood every few hours, measured my food into predetermined portions that followed my low-carb food plan, and, once I finally started insulin, calculated each dosage meticulously. I can only imagine how it must have felt for them, trying to balance it all and process their own feelings about my brand-new condition at the same time. It must have kept them up all night during those early days, wondering how my life would be now that it had forever changed course, how I would manage it all on my own someday, how they would make sure they did everything right to keep me healthy. If they could have, they would have wished it all away, too.

Indisputably, being diagnosed in this day and age doesn’t hold the same worries that it once did. Before insulin was discovered, diabetes was a guaranteed death sentence. Now, thanks to Dr. Frederick Banting—inventor of insulin—it’s usually demoted to a life sentence. Still, for diabetics and those who love them, there’s always a modicum of fear brewing deep inside. It almost feels unspeakable. What if I do everything right and something goes wrong anyways? What if I can’t afford my insulin someday? What if I became a statistic? The truth is that that’s the reality for many diabetics. Insulin is reasonably cheap to produce—costing about three to four dollars per vial—but is sold at about one hundred to three hundred dollars per vial. Depending on someone’s age, sex, weight, and carbohydrate intake, they may use about three or four bottles per month. As it stands right now, about one in four diabetics admit to rationing their insulin due to the profound increase in costs. 

Despite the fact that I wasn’t in charge of my care, I was aware of all of the changes in my life. I couldn’t understand why all of this had to happen to me. Had I done something wrong? Only months ago, I had been learning about letters and numbers and the colors of the rainbow in my preschool class. Now, I had to learn about what a carbohydrate was, and what the pancreas does, and why my pancreas doesn’t do it. I remember the day I went to kindergarten with a freshly printed copy of the book, “Taking Diabetes to School,” tucked away in my princess backpack, waiting to explain it to the other kids. I sat up at the front of the class while the teacher thumbed through the book and read aloud. I wished that I could be like the rest of them on the alphabet-themed rug, sitting cross-legged and having bodies that didn’t launch an unexplained attack on itself. 

Diabetes invaded my life in countless ways. Amidst the sea of my stuffed animals was now a bear named Rufus. Rufus wasn’t like any other teddy bear that I had; all the others were from Build-A-Bear, cute and shiny and decked out in overpriced tutus and headbands. Rufus was plain, covered in light brown fur, except for the square, colored patches that covered some parts of his body. There was a giant green patch that covered his belly, a red patch on each hand, and a blue patch at the top of each leg. He was made specifically to teach young diabetics to learn how to inject needles into their skin. Sometimes, to help me practice for my future, my mom would fill up my orange-tipped syringes with water, and guide me on how to carefully wipe the spot with an alcohol pad, gently pinch the skin, insert the needle (not too fast, but not too slow either), and plunge. When I played with my toys during this period in my life, half of the time I was creating rich, dramatic storylines with a slew of glamourous dolls, and the other half of the time, the lines between child and patient were imperceptibly blurred.

***

The second year that I had diabetes was somewhat better than the first. I continued to adjust to my new reality—as much as you possibly can adjust when you’re dealing with a lifelong autoimmune disease that you’ve developed before you’ve learned your multiplication tables. Nevertheless, I hated that feeling of being different from everyone else. 

Checking my blood became more irritable than painful. I started to build up calluses on my fingertips at this point, a sign that my hands had finally started to adapt to having a needle pushed into them four or five times a day. But I didn’t like that I was the only one who had to do it. Headstrong and stubborn, I came to the decision that if I was going to have to check my blood, so was nearly everyone that stepped foot into my home. They were just going to have to do what I did. 

“Can I check your blood?” I would ask, innocuously. “Please? I have to do it all the time.”

Unsurprisingly, most house guests were unable to deny a six-year-old with big round eyes and scars forming all over her own fingers, so even the most needle-phobic people let me do as I please. I loved it. I wasn’t the outlier anymore. It felt like second prize to not having to check my blood at all, but second prize was more than enough for me in those moments. 

Despite these few moments of respite, there were nights when it felt like my whole world was shattering around me. When everyone had gone to bed, I fell into a spiral of anguish and anger. I was the only one in my whole family with diabetes. I was the only person in my class with diabetes. It wasn’t fair that I got it. It wasn’t fair that my body attacked my insulin-making cells. It wasn’t fair that doctors couldn’t fix it. If they could fix a shattered arm or an aching throat, why couldn’t they do anything to fix a faulty pancreas? None of it was okay, none of it was going to be okay, none of it would ever be okay. 

On one particularly difficult night, I got out of bed and walked over to my white wicker bookshelf—the one that was stacked so tightly with books that it looked like it was going to crumble to the ground at any moment. I reached into the middle shelf, sliding over copies of Junie B. Jones books, and pulled out a sea-shell shaped notepad. I had gotten the notebook at the Dollar Store the week before and I thought it was the most beautiful thing I had ever seen. The shell was a cool purple shade, and the ridges were filled in with a blue glitter. I thought that it would be perfect to doodle in, or write songs in, or design extravagant dresses in. But on this night, it had one express purpose. 

With the seashell notepad in one hand and a pink glitter gel pen in the other, I crawled back into my bed, pulled the sheets up, and leaned against the white metal bed frame. Uncapping the pen, I flipped the book open to the first page and started writing. 

I hate diabetes. I don’t want diabetes. Why do I have diabetes? 

After I finished filling each page with huge, heavy-handed writing, I would rip the page out, fold it up as many times as I possibly could, and then throw it down into the space between the bed and the wall. Burnout tends to be inevitable when it comes to chronic illness—there is never a single moment in which you get to stop and take a break. I didn’t know how to handle those big feelings when I was only a year into having diabetes. I was furious and confused and tired. I didn’t know how—or truthfully, want—to talk about any of it. Burying that heavy, indescribable exhaustion felt easier. So, I wrote and ripped and tossed until the notebook was completely empty. 

  ***

By the time that I was entering my third year with diabetes, I went from insulin shots to an insulin pump. The decision was life changing; the pump calculated boluses on its own, only had to be changed every three days, and gave me more freedom in my diabetes care. I wasn’t reliant on my mom or dad to inject me; instead, I could type the number of carbs I was consuming into my controller, press a button, and get my insulin painlessly. 

The only issue was that my Omnipod, the insulin pump I chose, looked enormous in my eyes. In reality, the dimensions of the Omnipod are 1.53 inches by 2.05 inches by 0.57 inches. It’s egg-shaped, an opaque white color, and tubeless. That’s why I chose it—the other pumps had so much tubing hanging out the side, just waiting to be caught on a door handle or, worse, noticed by a peer. The pod attaches to just about anywhere you want on your body, provided that there is a bit of fat. Lean tissue is acceptable but can lead to an occlusion in the cannula. Most people follow my bear Rufus’s lead, sticking their pump to their arms, thighs, or stomach. 

When I first got my Omnipod, I stuck it to my hip area, just below my back. I could conceal it there, pull my shirt down to hide the protrusion so that no one would be able to ask me about it. The Omnipod website suggests that the site of insertion should be rotated to promote insulin absorption. I kept it there from the time that I got my first pod to the time that I turned seventeen. I cared far more about keeping my pod as concealed as possible than I did about maintaining the efficacy of the system. I had to have the insulin, I had to have the pump to get the insulin, but I didn’t have to let anyone see it happen.

Eventually, I decided that it was time to move my site. I was entirely motivated by the state of my skin; it was constantly being broken down by the pod’s harsh adhesive and slathered in Aquaphor to revive it. The thought of putting my pod on my stomach was a non-starter. What if I wanted to wear a tight shirt? Everyone would see the outline. My legs weren’t factored into the equation either. Though that adhesive was more than sufficient in breaking my skin into an angry, itchy, red mess, there were plenty of times that it ripped right off. I could just imagine falling asleep, rolling over too hard, and feeling the harsh pull of the cannula—the little tube that pumped insulin into my body—out of my skin. My only other option was to put it on my arm. So, I tried to ignore the fact that shorts-sleeve weather was rapidly approaching, peeled the sticker off the pod, glued it to the back of my arm, and clicked the button. It was on. 

About two weeks later, I was standing in the auditorium during choir class. The day had been perfect as far as high school days go—the air was balmy and sweet, the kind of weather that makes you want to sit outside and breathe it all in. It was last period, the day finally ending after hours of analyzing novels, balancing chemical equations, and trying—but usually failing—to figure out what “x” equaled. I was wearing a t-shirt, something I had bought at the bookstore of a college I had visited, fresh off the high of the possibility of the future. While I looked over a sheet of music, absentmindedly trying to figure out the harmony, I felt a tap against my pod. Not my arm, not my shoulder, not my hand. My pod. 

“So, sorry, you totally don’t have to answer if you don’t want to,” a freshman said to me. “But what’s that thing on your arm?” 

It took me a second to gather myself. I didn’t know this freshman at all—we had never spoken beyond introductions and pleasantries. What right did this stranger have to touch my pod like that? What right did he have to ask me that question? And most of all, why is it always my job to teach people anything about diabetes when Google is so readily available? But still, I knew he was harmless, albeit clueless. And as much as I hated feeling spotlighted about my diabetes, I hated ignorance more. So, I swallowed my pride and gave him the answer he wanted. 

“It’s an insulin pump,” I told him with the biggest smile that I could possibly muster on my face. If this exchange was uncomfortable for me, I wasn’t going to let it show. “I’m a type one diabetic.”

When he heard those words, his face paled. He backed up slightly, increasing the distance between us, and incoherently muttered an apology. 

“Oh, no, I’m so sorry, I’m sorry I asked, sorry, sorry, sorry,” he rambled, and I kept smiling that big uncomfortable smile. 

“It’s fine. It’s really fine,” I assured him. 

On my drive home that day, I reviewed the exchange in my head. If he was going to ask, why did he have to make me feel so hollow when I answered? How was it fair that someone I didn’t know at all could confirm my fear—that people were weirded out or disgusted or afraid—and then move on with their day like it was nothing? I resented the power that he—that other people—had over me and how I felt about myself. I had always felt like that, like I had to wear the right clothes and say the right things and style my hair the right way. I wasn’t perfect, rather far from it, but I wanted nothing more than to blend into the crowd seamlessly. A cruel comment about my shirt was crushing but fixable. I could toss the old shirt, buy a new one, wear it like the first one had never existed. A vicious whisper about my eyebrows was humiliating, but easily resolvable. I could trim, pluck, shape, perfect. An isolating comment about my diabetes was the ultimate devastation. No matter what I wore, no matter what I did, there was nothing I could do to fix that but wish in vain. 

  ***

If you ask any type one diabetic, there is a roughly a one hundred percent guarantee that they will have heard at least one of the following lines:

1. But you’re not fat, how do you have diabetes? 

2. Did you get it from eating too much sugar?

3. I could never do what you do. 

4. Should you be eating that?

5. My grandma/grandpa/cousin/neighbor/dog has diabetes, too.

6. My grandma/grandpa/cousin/neighbor/dog lost their foot because of diabetes. 

Navigating the world’s views about diabetes can feel like a fruitless effort. While there are plenty of people who are willing to invest time and effort into learning about diabetes, there are people who will never understand my reality, who will never care enough to inform themselves, who will unwittingly make me feel like “other” in less than a minute after disclosing that I have diabetes. Those comments used to tear me apart when I heard them back in elementary, middle, and high school, knowing that those people would always see my diabetes, and therefore me, through a warped lens. 

I’ve thought about my identity a lot in the past few years. For a long time, I would avoid saying that I had diabetes unless it was absolutely necessary. I was as subtle as I could possibly be around people I didn’t know well, checking my blood under tables and burying my pod under layers of clothes and trying my hardest to laugh at diabetes jokes when they inevitably arose in conversation. I didn’t want to be a diabetic, and as hard as I wished things would change, that wouldn’t happen. My parents did a great job in making sure that I knew diabetes was not the only thing about me. They reminded me that I was kind, and smart, and brave, and funny. They told me that having diabetes did not define me—yes, I have diabetes, but I also have brown hair and brown eyes and a beauty mark on my left cheek. They instilled in me that I was a person with diabetes, not a diabetic. I’m immensely grateful for their guidance, and in some ways, they were right. I am kind and smart and brave and funny. My hair is brown, my eyes are brown, and I do have a mole—sorry, Mom, a beauty mark—on my left cheek. But I am a diabetic. 

There’s plenty of discourse surrounding person-first language versus identity-first language. Person-first centers on the fact that a person is a person first, while identity-first centers on the diagnosis. Advocates of person-first language want to reiterate that someone is more than their condition while advocates of identity-first language feel that their diagnosis being a major part of their identity is not an inherently negative thing. There are multilayered benefits and drawbacks to both, and ultimately, there is not one right answer. It all comes down to each individual’s personal preference. 

In the early 2000s—when I was diagnosed—person-first language was the standard and identity-first language was considered offensive. My parents followed suit and raised me with a preference for person-first. They did this with the best possible intentions. The general consensus in this time was that using person-first language would maintain a level of individualism outside of the condition. The idea was that saying that someone was a person before they were their condition would hopefully help to remove unfair and inaccurate stereotypes. My mom and dad always wanted me to know that having diabetes wouldn’t stop me from doing anything I wanted to do in my life, so only using person-first language to refer to me made complete sense to them. 

As I’ve gotten older, I’ve come to my own understanding about the matter. Though I tend to use terms interchangeably, I gravitate more towards identity-first language. For as long as I can possibly remember, stretching back as far as I possibly can in my own mind, I have been a diabetic. The idea of a life without checking my blood and changing my pod and balancing the highs and the lows is entirely unfathomable to me. Through every vital moment of my life, every first day of school, every discovery of a new dream, I have been a diabetic. Being a diabetic has entirely shaped who I am as a person. Diabetes has made me responsible. Diabetes has made me thoughtful. Diabetes has made me insightful. Diabetes has made me empathetic, and mature, and passionate. It has opened my eyes to injustice in the world—like insulin being the sixth most expensive liquid in the world—and given me the drive to want to address that injustice. Being a diabetic is inextricable with who I am as a person. I can’t imagine who I’d be without it all. 

When I catch a glimpse in the mirror and see the pod hanging onto my arm, it reminds me of everything that I’ve become. Who would I be today if I didn’t live through all the long nights awake, all the doctor’s visits, all the misguided comments, all the beautiful moments of connection and understanding? How would I move through this world if I hadn’t spent those nights tucked in the middle of my parents’ bed, both of them rubbing small circles on my back, while I cried and cried and cried about how it just wasn’t fair? Would I be where I am today if I didn’t feel those moments of bursting pride when a friend knows exactly what my blood sugar is supposed to be?

I think that even if my diabetes was cured, I’ll always be a diabetic. 

  ***

When I was in college, fourteen years after I was diagnosed, I was going through the giant Rubbermaid boxes full of stuff from my old room that are stored in our garage. I moved twice in two years, and packed away most of my childhood belongings as fast as I possibly could, trying to work efficiently to get it all over with. Most of the things in those boxes were stored in the attic at my old house, and I hadn’t seen them in a quite a while, so when I got to rustle through them again, I was thrilled. One of the gigantic boxes is filled with my old childhood books, most of which I had gleefully purchased at the Scholastic Book Fair or at Borders bookstore with my dad. Another box is filled with toys and dolls. There are an exorbitant number of Barbies and Bratz dolls, all dressed in mismatched patterns or gowns that I fashioned out of fancy paper napkins and colored rubber bands. Yet another box sitting in the corner of the garage, placed right underneath the windows, is filled with random decorations that had been in my room throughout the years. There is a decorative beaded pillow, 3D movie theater glasses, and the gray boombox that my sister gave me when she got her first iPod so that I could play my Taylor Swift CDs. I shuffle through the boxes, pulling out item after item, thinking about how these things that seemed so insignificant now had been so vital to my life. 

That’s when I come across a wooden box. Most people would see it as quite unremarkable; the finish is starting to deteriorate, the color is faded, and it is undeniably simple looking. But I know how special this box is the very moment I see it. When I was five, maybe before I was diagnosed or maybe after, I decided that this box would be the keeper of all of my dearest possessions. 

When I open the box, its contents are unsurprisingly useless to my adult self. The entire inside of the box is filled with breakable plastic rings that I won at the arcade, one half of a set of silver friendship necklaces, Lilo and Stitch temporary tattoos, and a fuzzy koala keychain. And there, nestled right in the center, is a little clear plastic bottle filled to the brim with purple, pink, and silver glitter. It looks just as magical as the day I got it.

I don’t make a wish on it this time. I know better now. Magic is kept within the movies, books, and stories. Maybe that’s what makes it so magical, that it’s exclusive to these little worlds that we get to slip in and out of through the power of words. The real world is too big and harsh and cold to have that magic. We need to have magic out of reach, something to hope for, something to escape to when our fingers hurt, and our skin is broken down, and we can’t stop wishing we had a different body.

  Besides, I don’t know exactly what wish I would make nowadays. I could always ask for a new phone or a European getaway or world peace. Maybe I’d ask for insulin monopolies to be taken down so insulin would be affordable. Or, yes, maybe I’d ask for diabetes to not exist at all. Despite my love and appreciation for the way my condition has changed me, I’d still jump at the chance for a cure. I think that’s understandable. It’s a running inside joke between diabetics that the cure is five years away, but I stay cautiously optimistic that one of these next five years will make that joke obsolete. 

Until then, I know that this is my life. It’s been far from easy, but over the past few years, I’ve learned more than I could’ve ever imagined. I’ve learned to accept my scarred fingers and my broken down skin and my mostly useless pancreas. I’ve learned to wear my pod with pride, for all to see. I’ve learned to answer (or deflect, if needed) questions, both ignorant and well-intentioned. I’ve learned to develop a deeply beautiful acceptance and—as some may argue—a morbid appreciation for my disease. I’ve learned that I should surround myself with people who love and support me—and therefore my diabetes. I’ve learned that my self-worth can’t be defined by other people’s words. 

Those boxes are still sitting in my garage. If I wanted to, I could go outside, pull the door up and secure it in place, and step inside that room. I could feel the hard concrete under my feet, and open the windows to let a little air in, and listen to the hum of the freezer. I could dig through box after box to find that glitter again. I could dump the whole bottle into my hands and wish and wish and wish. I know it wouldn’t work, but maybe it would feel right—close some sort of loop that I opened on the first day that I got it and made my first wish. Like I said, I’ve learned a lot of lessons since that day I first got that glitter. Most importantly, I’ve learned that learning these lessons is sometimes incredibly painful, but it’s also incredibly worthwhile.

 I only wish I could’ve done it sooner.