Cast by Chronic Illness Into a Limiting Role

Maris Kreizman | Longreads | November 2017 | 10 minutes (2,462 words)

In junior high, I had my heart set on attending a famous performing arts sleep-away camp in upstate New York. All I’d ever wanted from the time I was 4 and saw a local production of Oliver! was to be a Broadway star. I could barely contain my jealousy of all the child actors who were making it big in musical theater that year, 1990: the orphans of Les Miz, the orphans of The Secret Garden, the orphans of Annie. I had the talent to be an orphan too! I just needed a chance to go away from home, I reasoned, because very few successful orphan characters are discovered living with their parents.

If only I could attend French Woods, the place where Natasha Lyonne and Zooey Deschanel had spent their summers — a destination for suburban preteens on the East Coast who had Broadway ambitions, kids who perhaps idolized Bernadette Peters (me) and had strong opinions about Andrew Lloyd Weber’s early work (also me). I had always fit in just fine in my New Jersey town, but I knew I would find my people at French Woods.

Instead, I found myself at the Clara Barton Camp for girls with diabetes. I wrote my parents a “please come pick me up or I will die” letter after my first night.

***

My pancreas stopped making insulin when I was 9 years old. After a few weeks of general lethargy and waking up in the middle of the night to drink and pee, and drink and pee again, I was diagnosed with Type 1 (aka “juvenile”) diabetes. I was admitted to the hospital for a few days to get stabilized while my parents learned all sorts of things: how to recognize the signs of high and low blood sugar; what and when to feed me; how to cry discreetly without alarming me too much; how to “milk” my fingers once pricked to coax out an adequate amount of blood for testing my glucose levels; how to give me twice-daily insulin injections in the fleshy part of my arm. There was a lot of practice, which involved holding syringes like darts and stabbing oranges, quickly and without hesitation. Oranges remain my least favorite fruit.

I learned a lot in the couple of years that followed: that carrying LifeSavers at all times might literally save my life one day; that dousing corn flakes with Nutrasweet could be an almost-fulfilling replacement for Frosted Flakes; that intense anxiety was a side effect of requiring regular insulin injections to live; that the school nurse and I would have an ongoing relationship; that having strict routines was both oppressive and comforting.

I also learned that being “different” was only okay if it meant “better” or “smarter,” not “sicker.” And so blending in whenever possible became paramount. I can’t count how many times I’d tried to act “normally” when my blood sugar was low, making me feel weak and dizzy and spaced out. I still carried on conversations and took tests, and later in life presented at business meetings while waiting for glucose tabs to kick in.

All I’d ever wanted from the time I was 4 and saw a local production of Oliver! was to be a Broadway star.

I sat in on a single session of a diabetes peer support group, led by a nurse practitioner named Leona. It was an earnest attempt on my mom’s behalf to make sure I would know other kids who’d understand what I was going through.

“What makes you feel sad about having diabetes?” Leona asked a group of five or six of us.

We went around in a circle.

“Nothing,” said the kid to her left.

“Not much, I’m okay,” said the kid to that kid’s left.

“I think it’s hard to keep to a regular eating schedule that’s so strict,” I said.

“I can’t think of anything,” said the kid to my left.

When the meeting ended, Leona cornered my mother and asked if I needed more intense counseling because obviously I was having a difficult time dealing with my disease. My mom never made me go back to that support group again. They were a bunch of fucking morons, we both agreed. That was officially the end of me trying to connect with other mini-diabetics.

If only I could attend French Woods, the camp where Natasha Lyonne and Zooey Deschanel had spent their summers. Instead,I found myself at the Clara Barton Camp for girls with diabetes.

So naturally, Clara Barton was not a place I would have chosen on my own. But performing arts camp was not an option for a kid who still needed her dad to stab a needle dart in her arm every morning. Until I could take care of myself, I couldn’t work on my Broadway career. My first destination away from home would have to be a camp for diabetics, a place for me to interact with the peers I had actively tried to avoid. My parents hoped I’d find a different kind of fulfillment there, and that perhaps my camp experience would make me a celebrated archery champion, except with syringes.

***

There were no singing or dancing classes at diabetes camp. “Theater” class consisted of one counselor who told eight or nine of us to write and perform a sketch for the camp’s end-of-season talent show, but who offered no further guidance. I tried to take charge, but I couldn’t even convince them to let me stage a modest production of just a few scenes from “Into the Woods.” Luckily I had the range to simultaneously sing all of the parts in the big Les Miz production number, “One Day More” by myself, because not one other girl in my cabin wanted to harmonize with me. I was so lonely.

I learned nothing over that two-week course about the dramatic arts except that acting like you’re fully invested in the future of a camp talent show sketch when you’re trying not to cry from loneliness is harder than singing the most complex of Sondheim songs.

Instead of drama lessons there was volleyball, kickball, softball, and assorted other sports. I spent as much time as possible in the outfield, or on the bench, actively hiding from various flying balls and rereading the Sweet Valley High novels I’d almost outgrown but had brought from home anyway. There was also mandatory swim, which I sat out as much as possible by pretending to be on the rag for nearly two weeks. I was a scrawny 11-year-old who probably looked 9 and was still a few years away from getting my period, but I clutched my lower belly and moaned and dared them to challenge me. While the other girls flounced about in chlorine, I sat next to my counselors’ emergency kit and helped dispense glucose tabs or peanut butter crackers to my fellow campers when their blood sugar levels dipped.

The Clara Barton camp also had a big dining hall where they served meals tailored to each girl’s individual caloric needs, but with little consideration for our food preferences. We were expected to eat everything on our trays for the benefit of our health, hence the most dire line in my sad missive to my parents: “They made me eat tomatoes.” I needed to make clear that atrocities were taking place, and I wasn’t okay. I soon realized my taste buds did not rate as a priority at a camp where my broken pancreas was my foremost body part. I would encounter lumpy oatmeal, lumpier Sloppy Joes, soggy salads. My only consolation were Nilla Wafers, the gentlest of cookies for diabetics. We were allowed three or four if we finished our dinners. I would never chew them, but instead suck on them until they turned mushy like the last bite of an imaginary ice cream cone they’d never dare serve us. I was already aware at that young age that little bits of sweetness should be savored for as long as possible.

I had never wanted diabetes to be a core part of my identity, and forcing friendships defined by matching prescriptions for insulin felt shallow.

After dinner there were the cliché campfire singalongs, minus the roasted marshmallows, of course. We’d sit cross-legged on the ground, feeling the grass stains sinking into the backs of our shorts as we sang along to inept yet enthusiastic acoustic guitar covers of old folk songs. I still have a Pavlovian reaction to “Leaving on a Jet Plane:” a few notes of the song is all it takes for the feeling of acute homesickness to start in my gut and permeate my body until it reaches my tear ducts and adrenal glands. Later I would experience this feeling during particularly bad breakups and other times of crisis, but the memory of singing Peter, Paul, & Mary in western Massachusetts would remain my benchmark for loneliness in its purest form. No emergency kit exists for that.

***

My first endocrinologist was careless, if not downright cruel: In 1987 he told my parents and me that he expected we wouldn’t have to deal with my diabetes for much longer. We would never have to worry about long-term complications from my disease like vision loss and kidney or nerve damage. With so many discoveries and innovations arising all the time, a cure was surely on the immediate horizon.

I truly believed that a cure was just a few charity walkathons away. I would dream up elaborate menus for the meal I’d eat on the Bacchanalia I thought of as Cure Day: Sour Patch Kids as an amuse bouche, an appetizer of Count Chocula, then pizza with a side of French fries, followed by 10 different kinds of desserts. Cure Day would entail five minutes of pain (I assumed The Cure would come in shot form) and then pleasure that would go far beyond the immediate intake of massive amounts of sugar: I would go back to being a normal kid again.

Thirty years later, my dad still raises money for that damn walkathon. He also volunteers at his local New Jersey chapter of the Juvenile Diabetes Research Foundation, and he subscribes to all of the diabetes publications — Forecast, Countdown, Diabetes Self-Management — that regularly talk about the promise of new technologies. I let my sweet father be the optimist on my behalf. At my request, he has promised not to share any articles with me anymore.

***

In 1990, not only was I the only aspiring thespian at diabetes camp, I was also the only 11-year-old girl. With no other options, I was placed in a cabin with a group of ten almost-13-year-olds. If you’ve ever gone through puberty, you know two years makes all the difference. The girls in my bunk wore bras, shaved their legs casually, and told stories about high school parties. I was puny and underdeveloped and therefore already out of my element among girls my own age. But in many ways I still felt more sophisticated than my bunkmates. Take, for instance, the girl in the cot adjacent to mine, who insisted that we call her “Panda.” Her name wasn’t even Amanda or something else that rhymed. It was like, Debbie, or something. Panda was incredibly sweet and enthusiastic and full of wonder, and her earnest girliness infuriated me. I was thinking big thoughts about art and she just wanted to play. I had recently portrayed Audrey in a production of Little Shop of Horrors at the local Jewish Community Center, and I’d seen Pretty Woman in the theater like a damn grownup; Panda loved to do cartwheels and collect stickers. We had nothing to talk about except how lousy the food at camp was. There were no soul-bearing talks about how having diabetes sucks. It was the subtext of everything we said, of course, but complaining about the smaller things was so much easier than grappling with more philosophically complex issues. I wasn’t sure if any of the girls in my bunk had the vocabulary for it, anyway.

Years later, when I was a single woman living in New York City, well-intentioned acquaintances would be eager to set me up with men who lived near me, as if having a penis, being single, and residing in a convenient geographical location were the only criteria for matching me with a future partner. Personality was an afterthought; intelligence, common interests, and compatibility mattered not at all. It reminded me of similar expectations at camp: a malfunctioning pancreas was supposed to be all I needed in common with these girls in order for us to become best friends forever. I’d never wanted diabetes to be a core part of my identity, and forcing friendships defined by matching prescriptions for insulin felt shallow.

***

My parents didn’t pick me up from camp early. They told me later that they had many stiff drinks the night my pleading letter from camp arrived, days after I’d sent it. They figured I’d power through. And I did. I even learned to give myself my own injections — my preferred method was less like decisively throwing a dart, and more like gently inserting a knife into a jar of creamy peanut butter. Smooth. I wouldn’t need to rely on anyone else for the daily upkeep of my disease ever again. It may seem melodramatic to say that the pain from a needle seemed trivial compared with all of the other angst I felt, but hey, I was a theater kid.

Most of the time I keep quiet about diabetes, and certainly don’t seek a community around it, because I don’t want it to be my identity. I don’t want to be Diabetes Lady.

Some life goals inevitably become hobbies. My musical theater passion is now merely an itch I scratch every few weeks at karaoke. The management of my disease, of course, remains front and center. It only recently struck me that despite some advances, it’s possible I will not see a cure in my lifetime — that the quest for a cure is my version of a corny musical where the guy and the girl fall in love at the end and sing a beautiful duet that promises many more offstage beautiful duets to come. It’s a lovely fantasy.

I feel adamant, though, that whether or not a cure is ever discovered, I refuse to be defined by my illness. Sometimes I try to remember life pre-diabetes, to assess how much it’s affected me. Was I always so dependent on my parents? No. So fearful of trying new things? No. For a kid who was already more anxious than most, it took a certain amount of bravery to contemplate going away for the summer, even to pursue my passion. Was I so obsessive? Later in my adult life I was diagnosed with OCD, and I tried to remember if any of the symptoms were present pre-diagnosis. There was my fixation on Bernadette Peters. I’d obsessively listen to her soundtracks so I could sing her parts with her exact accent and phrasing.

These days, most of the time I keep quiet about diabetes, and certainly don’t seek a community around it, because I don’t want it to be my identity. I discreetly shoot up insulin in restaurant bathrooms, then measure the costs and benefits of various items on the menu in my head, never out loud. I don’t want to be Diabetes Lady.

I am not my disease. It’s just an annoying thing that I’ll have to deal with every second of every day for the rest of my life.

* * *

Maris Kreizman Maris Kreizman is a reader, writer, and editor who has worked in book publishing for many years. She’s the author of Slaughterhouse 90210, and her writing has appeared in the New York Times, the Los Angeles Times, Vanity Fair, Esquire, and more.

Editor: Sari Botton