Don't Stop Believin'

Twenty years ago, on March 3, 2006, I was diagnosed with type 1 diabetes at nine years old. 

For those of you who don’t know, type 1 diabetes is an incurable, unpreventable autoimmune disease that is distinct from the more widely known condition, type 2 diabetes (usually misguidedly referred to as just “diabetes”). Those of us with type 1 diabetes can no longer produce insulin, the hormone that regulates blood sugar, on our own, so we use synthetic insulin via injection or an insulin pump and monitor our blood sugar with either finger pricks or the use of a continuous glucose monitor. This disease is most often, though not exclusively, caused by genetic markers that can increasingly be detected before the pancreas stops producing insulin. However, it’s still unclear exactly how those markers are transmitted. In my case, I am the only one in my family who has ever been diagnosed with this disease. 

Twenty years feels like a bittersweet celebration, but I am honoring that today by letting you into a piece of my world that I usually keep private. Though everyone’s experience with type 1 is unique, I hope that I can give you a window into what it looks like to live with this disease, and others like it, in a way that fosters greater empathy and awareness. 

In mid-2005, I developed a skill: I learned to drink water really quickly. I would even show off to others how quickly I could crush a water bottle as if it were a new party trick that demonstrated my vitality and hydration. I have concrete memories during this time of sitting in restaurant booths as I asked the waiters to replenish the water carafe over and over and over again. 

In early 2006, my family moved from Capistrano Beach, California, to Corvallis, Oregon – an eighteen-hour total road trip that we completed in two days with two cars, five humans, and eight pets. Sitting beneath the console of our van was a case of water that I promptly drank through while trying hard to leave a few spare bottles for the rest of my family. Despite needing to go more often, I sheepishly asked to pull over to pee only once an hour or so. It was on that two-day trek that I learned that gas station bathrooms are definitely not for me. It was also when I learned how to “hold it,” an unfortunate skill that I still very much have today (in one cold gas station bathroom, my mom joked that instead of having four stomachs like a cow, I have four bladders). TMI, I know. 

Despite everything, I enjoyed seeing the West Coast stretch out before me and expand what I considered home. I remember one stop where my dad and I raced through a foot of snow to a tree in the middle of a nearby field. As a kid from Southern California who had only experienced snow once before (and barely – my sister was in a tank top), the experience of running through it was magical. 

When we finally landed in Corvallis, we settled into a hotel that served as our home for the next month before our actual home was ready for us – yes, two hotel rooms, five humans, eight pets, one month. I started school not long after and began making new friends. 

While still adjusting to this new environment, one of those friends invited me to her birthday party. I was grateful for the invitation, but equally nervous to be sleeping at a stranger’s house with a handful of girls that I had only known for a few days and was still figuring out. I also felt sick, but that lingering sickness had become so normal to me that I assumed other kids my age felt the same. That evening, my mouth felt like cotton, my head was fuzzy, I couldn’t sleep, and I was drinking an extraordinary amount of water. I didn’t let it get to me, though – I just chalked it up to a new environment and kept on hanging out with my friends. 

The next morning, the birthday girl’s mom made us breakfast before our parents came to pick us up. As we were winding down and packing our belongings, the mom told me that she had a present for me. She then proceeded to grab a reusable water bottle outfitted with a strap so that I could wear it around my neck. She thought I might find it useful. 

I felt humiliated. 

I didn’t know these people, and I certainly didn’t know this adult, but my differences had now been exposed in a way that I could neither ignore nor make sense of. Her sudden exposure left me feeling mocked and small. In an instant, my water consumption shifted from a cool party trick to a confusing source of shame. However, I politely said “thank you,” walked out with the water bottle in hand, told my parents what happened, and never returned. 

Shortly afterward, we moved into our new home that featured a full-length mirror in the bathroom. One evening, I lifted my shirt to discover that I had lost some weight. Excited, I stood there a little while longer admiring my flatter stomach. The truth is, I had lost ten pounds in two weeks because my body was starving and turning on itself for fuel, a symptom of a life-threatening complication called ketoacidosis. But I thought I looked pretty. What does it say about our culture that a child could be so relieved by her own shrinking image?

It's interesting, too, how hard it can be for us to see a change in the moment. Years later, I looked back at a photo strip with my mom from the Newport Aquarium, where I looked so white and skeletal that I retroactively feared for my life.  At the time, it was just a fun memory. 

Those images are the last ones I remember before my body got so sick that it left me with a gap in my consciousness. There are flashes of lying on the couch or listening to hushed conversations between my parents, but that’s it. What I didn’t know is that my mom had recently bumped into someone at a bank who was talking about her son with type 1 diabetes, which led my mom to do her own research and decide that maybe this wasn’t a cold or a flu but something that required more immediate attention.  

Some days later, I woke up beside my parents’ bed and thought, “I think I’m feeling better. Maybe I can go to school today.” In reality, I was so sick that my parents had to lift me out of my makeshift bed and help me get dressed. They had already decided to take me to the hospital that day and wouldn’t be swayed by my earnest conviction that I was improving. As an adult, I feel for that version of myself who wanted so badly to be normal, to be okay, that she tried so hard to convince herself that she was. 

The rest of that day lives in my memory like a medical montage from a TV drama. My dad carrying me through the parking lot. The cold and crunchy paper rustling beneath me as I lay on the exam table. The unsympathetic doctor diagnosing me with type 1 diabetes and facilitating an immediate ambulance transfer to OHSU in Portland. The kind men loading me into the ambulance and attaching wires to my skin as my mom jumped in beside me. Those same kind men handing me a stuffed animal for comfort. The ambulance doors closing on my dad as he rushed off to figure out how he was going to manage this. Desperately trying to keep my eyes open so I could hear the ambulance siren. Realizing I had missed the siren when I woke up on a stretcher being wheeled through a glass skyway. 

That evening, I watched as doctors and nurses passed by the sliding glass doors to my room in the ICU at Doernbecher Children’s Hospital. Two doctors were monitoring me – one who I didn’t like, and one who I did. I imagine I made my feelings known because, before long, only the one I liked was coming by to check on me. I was experiencing unquenchable thirst, but I was told I wasn’t allowed to drink. Instead, the nurses offered me a few water-soaked sponges the size of a Starburst and said I could suck on those until my next allotment. Trust me, you do not understand thirst until you’ve experienced this. 

Before I fell asleep that night, my mom told me through tears that she had been worried that I wasn’t going to make it. I don’t think she would say that now – it’s a lot to put on a kid – but I understand that her relief simply needed to be externalized. She slept on a cot behind me that night and woke up periodically to help me to the restroom or talk with the nurses. 

Again, I didn’t know it then, but she had alerted her friends who alerted their friends, and soon, hundreds of people were praying for me all over the West Coast. Those prayers were answered, not only in my own recovery, but also through God’s financial provision for our family. We had just moved, didn’t yet have health insurance, and my hospital bill was over $10,000. That year, my parents received an unprecedented tax refund for nearly the exact amount. 

The very best part of my hospital stay was getting to spend time with my uncle, who was living in Portland. He joined us on my second day in the ICU and sat with me, helping me order my meals from the hospital cafeteria (chicken tenders, I think). His presence kept me calm. 

That same day, I was introduced to someone who would become another calming presence in my life: Joannie Kono. Sitting here writing this, I’m getting emotional about the impact that she has had on my life. I am so grateful that she was my diabetes educator and nurse for so many years before settling into her current role as a friend, champion, and excellent source of diabetes wisdom. Not only am I alive because of her, but my life is better because of her. I see the people who weren’t lucky enough to have Joannie intercede at their most critical moment, and their stories with this disease look much different than mine. But Joannie taught me how to chill, how to not let this disease change me more than it had to, and how to be thoughtful, but not paranoid, in my medical decision-making. She encouraged me to have fun with my friends and to eat what I wanted, but equipped me with the tools to do that well. She has fundamentally shaped my diabetes philosophy, and I am eternally grateful. That day, she burst into my room, talked us through some brochures, and then took out an orange so that my mom and I could safely practice giving saline injections.

After two days, I was moved out of the ICU and up a couple of floors to a new, quieter room. My attending nurse was named Brandi, and I can still see her handwriting with the heart-shaped dot over the “i” in her name. She was an exuberant light in my otherwise dark days, and a shining example of the impact that just one good nurse can have. Even so, I was desperate for something beyond hospital walls, so I asked my uncle if he could bring me the new movie, Elizabethtown, featuring some of my favorite actors for that time. He was faithful to provide, quietly dropping off the DVD in my room while I was away. That afternoon, my mom and I cozied up next to each other and watched an equal parts charming and melancholy film, but it was exactly the escape that I needed. 

That is, until my mom decided to plot an actual escape by sneaking me downstairs. She wanted Starbucks, and I wanted fresh air, so we monitored the nurse’s station and tiptoed down the hallway as soon as it was quiet. We then beelined for the elevator, and I felt sweet relief as soon as the floors started ticking downward. Thankfully, nobody questioned us standing in the Starbucks line or taking a breath outside, even though I was in a hospital gown and hooked up to an IV. I still drive past that elevator on my way to my doctor, and it makes me smile every time. 

It was mostly my mom and me during those days, though my dad and siblings made the hour-and-a-half drive a couple of times to spend time with me. My sister never came into my room, though, which was a sore spot in our relationship for a long time. I’m not sure why she didn’t. Maybe she was afraid or uncomfortable in a hospital setting, but she chose to wait alone in the lobby instead. 

After four days in the hospital, my blood sugar was back in range, my body was recovering, and I was able to go home. In hindsight, I wish I had felt more in that moment. It’s strange to recount, but so much of my life had changed so quickly that this new change felt almost normal. I didn’t feel upset about my diagnosis, and I didn’t question or grieve what I had lost. Mentally, I accepted this new reality as if it had always been my reality, but my body knew better and absorbed the shock of sudden change. 

I stayed home for a few more days to learn my new routine. For the early days of my diagnosis, I was on what’s called a “carbohydrate exchange” program, which meant that I worked with my medical team to determine how many “carbs” per meal I would have. In diabetes speak, one “carb” is actually 15 grams of carbohydrate. So, we decided I would have three carbs for breakfast, four for lunch, and four or five for dinner, which would simplify how much insulin I gave and create consistency throughout the week. This wasn’t something my family or I had had to think about before, so it required us to get creative with meals by maximizing nutrition and taste while keeping the carb count within established bounds (there may have been a surprisingly delicious watered-down maple syrup mixture that I still dream about). 

I was supposed to return to school that Friday, but I knew I couldn’t. On Thursday evening, I sat on the closed lid of my bathroom toilet and sobbed as I told my mom that I wasn’t ready. I begged her for more time to adjust. I was an anxious kid naturally, but my anxiety in that moment revealed what I couldn’t yet verbalize: the last six months had been too much. During that time, my parents had gotten back together and decided to move, we had left our loving ocean community and entered a new and confusing one, and I was diagnosed with a life-threatening disease. I was completely overwhelmed and desperately needed things to feel familiar. In that moment, familiar felt like a few more days at home with my family, and I was grateful that my parents let me have them. It helped that some of our friends from came to visit soon after, too.

By the time I returned to school, I had been away as long as I had been present. A few of those representing my feeble friendships walked up to me as soon as I arrived and half-heartedly announced, “We thought you died!” I laughed them off, told them what actually happened, and then carried on with the rest of the day. 

Slowly but surely, I started adjusting to my new life, which included more regular trips to my doctor in Portland (at first every three weeks, then every three months). On those days, my parents would call me out of school, and then one or both of them would take me to the hospital. When I arrived, I’d walk in, find a seat nearest the giant aquarium, and then wait to be called back for our visit. Afterward, we’d enjoy lunch at one of our favorite restaurants. 

My friend and I came up with a jingle that went like, “I don’t want to gooooo to the hospitaaal on Fridaaay, ooooh,” but it was only half true. Yes, I occasionally missed out on school activities and had to endure appointments where I was poked and prodded far more than I’d like, but I also got to eat good food and spend undivided time with my parents. 

By this point, Dr. Marcie Drury-Brown, the doctor I had liked from the ICU, was my permanent doctor. Like Joannie, Dr. Drury-Brown played a pivotal role in shaping my relationship with type 1 by teaching me how to care for my disease as a way of facilitating the rest of my life instead of structuring the rest of my life around my disease. I am where I am because of her. 

Though Dr. Drury-Brown’s support helped ease my transition, I still had challenging moments like the great gum debacle of ’06 or my first low blood sugar.   

After a few weeks, my days at school had become fairly routine: I would slip out of class just before lunch, walk down the long wood-paneled hallway toward the front office, and then turn right at the nurse’s station to test my blood sugar and get an insulin injection. Funnily enough, the son of the woman from the bank went to the same school as me. Occasionally, I’d stand off to the side in awe and watch him give his own shot before hopping up on the table to receive mine. 

On one particular day of school, my teachers caught me off guard by preparing a science activity that involved chewing gum. This was the first time I was being presented with food outside of my designated mealtimes, and I had no idea what to do. So, I frantically asked my teachers if they could call my mom and confirm that it was ok to have a piece. They did, and it was, but the whole ordeal left me feeling vulnerable. I sometimes wonder if these early moments of feeling like a burden informed my choices to conceal my disease later in life… but we aren’t quite there yet. 

My first low blood sugar was equally heightened, but far more dramatic. For context, a “normal” person’s blood sugar should generally fall between 70-120 mg/dL. The recommended range for those with type 1 diabetes is generally 80-180 mg/dL. I am very fortunate that I can feel my blood sugar well, but that also means that my sense of blood sugar depends on my recent trends. For example, if I’ve been trending higher, a low blood sugar will feel more intense. If I’ve been trending lower, a low blood sugar may feel less intense. For several months pre-diagnosis, my blood sugar had been hovering somewhere around 700 mg/dL. Keep that in mind. 

One day, my dad and I were at Garland Nursery, which was about a 20-minute drive from our house. We weren’t used to having to bring extra snacks and supplies for a brief outing, so we made the grave error of leaving my blood sugar meter and snacks at home. Toward the end of our adventure, I started to feel tired, hot, and uncomfortable. That was unusual for me, but I figured I was just ready to go home. By the time we got to the car, things had taken a turn. It’s hard to describe a low blood sugar to someone who’s never experienced one, but suddenly I felt like I was racing down the steepest part of a rollercoaster while having a hot flash. I was pale, sweaty, shaky, and anxious. The whole thing felt terrible.

I thought for sure my blood sugar must've been in the 40s or 50s to merit such a strong physical response, but when I got home and pricked my finger, the screen lit up with… (drumroll please) …79. All that for 79?!?! Are you kidding me?! But I guess 79 really does feel like death when you’ve been hovering several hundred points above that for some time. 

Not long afterward, I had a routine endocrinology appointment where Joannie encouraged me to register for Gales Creek Camp for Children with Type 1 Diabetes, just outside Forest Grove, OR. 

She said she thought I’d enjoy it. 

I told her no. 

She said it was a fun way to make new friends who share my disease.  

I told her no. 

She said I’d like the medical staff. 

I told her no. 

I had absolutely zero interest in leaving my family for days to go to another unfamiliar environment with unfamiliar people, where I would be labeled by my disease. Even so, Joannie left me with the paperwork and said, “Just think about it.”

On the way home, my parents convinced me to submit the paperwork. They must’ve bargained with me hard because I was still adamant that it would be a terrible experience. It helped that they said I could always change my mind, but really, I think that was just another one of their tricks. 

Two months later, my family and I were driving down Cedarbrook Lane – bespeckled with strange names like LuLu, Lobos, Roon, Crash, and Deuce – across the bridge, and through the spirit tunnel of counselors jumping and shouting as they waved us through to the parking lot. My stomach was in knots, and I wished that time would just slow down so that I could stay within the safety of my car for a moment longer. It didn’t. Instead, the car door opened into the harsh light of day, where I was greeted with a far-too-smiley individual who led me across the black top and down the slope of cedar bark chips towards the Girls' Cabin. My dad carried in my sleeping bag and suitcase while the counselor helped me pick my bunk. I was suspicious of this strangely energetic person, so I stayed mostly quiet despite their repeated attempts at conversation.

After dropping off my bags, the smiley individual ushered me and my parents toward the check-in line, where some new person presented me with a burnt orange t-shirt that had the outline of a person and a peace sign on the front and the tagline, “Camp ‘til it’s cured!” on the back. Somehow, my brother had been swept up in the camp excitement and was now playing in The Yard with a few counselors whose names continued to befuddle me (what’s a Coheed?) while my sister sulked in the backseat of our car. It helped that both Joannie (Kona) and Dr. Drury-Brown (Gromit) were there, but I was still worried that I wouldn’t make any friends.  

While in line at the Health House, I met a girl named Carly who told me that it was her first year at camp too. We bonded quickly as we crept forward in line, swapping stories and diagnosis dates. By the time I reached Gromit, I knew that I had made my first official camp friend. 

My parents and I continued winding our way through the different stations – lice check, nurses, camp store, etc. With every step, I once again wished that time would slow down so that my parents could stay with me a little while longer – I just wasn’t ready for them to leave. Despite my best efforts, the clock moved, the sun waned, and my parents decided that it was time to leave. They abandoned me on a quiet corner of The Log (our camp gathering spot) before collecting my brother and making their way home. I was scared, but at least I had my new friend Carly. 

That evening, I was introduced to many of the camp rhythms and routines including test and shots rituals, daily schedules, camp songs and chants (G! Pump it up, pump it up! C-C!), and the bathroom buddy system that required all of us to travel in threes so that one person could stay and one person could get help if someone passed out. We closed the day with capture the flag, a camp tradition that favors athletic fifth-grade boys with no social anxiety – I was just relieved to make it through. 

Around midnight, I woke up to a gentle nudge from a counselor announcing themselves as they pricked my finger. This was my first experience with night check, a twice-nightly ritual at 12am and 3am where counselors made their way through the cabin to ensure that everyone’s blood sugar was in range. If we were lucky, the process was quick, and we promptly fell back asleep to the soothing whisper of a counselor going, “Good night!” If we weren’t as lucky, we’d be handed a juice box or glucose tabs (the orange ones at camp were elite), followed by a snack of graham crackers and peanut butter. Right now, as I write this, I can hear the strange cacophony of insulin pump alarms mixed with the soothing tones of counselors as they shuffled about the cabin at night. It’s weird, but I miss it. 

I was slowly creeping out of my shell, but not enough to let any of the adults in beyond arm’s length. I did, however, find favor with the counselor named Deuce, who was determined to leverage my competitiveness to crack me. The method? Staring contests. I hate to say it, but his simple tactic worked quite well on me. With a single look, he’d come over, and we’d compete – sometimes once a day, sometimes multiple times a day. Our friendly battles were so much fun that I started asking for them over and over and over again… mostly just so that I could beat him over and over and over again. 

Carly and I became closer too, and even made new friends. I remember washing my hands in the bathroom with some of the girls one afternoon when one of them shared that she had had diabetes for seven-and-a-half years. I was shocked – at the time, that felt like forever to me. 

I was hesitant to admit it, but those days were filled with freedom, fun, and lots of good food – my personal favorite being a concoction of chocolate pudding and peanut butter that we called “sticky smooth.” I enjoyed being a part of a community where we could learn from each other and share inside jokes. For example, in our version of “Baby Shark,” the protagonist goes low from all that swimming and requires glucose tabs. We also once spent an entire afternoon memorizing the lyrics to “I Will Survive” by Gloria Gaynor as an empowering camp activity. I still know every lyric.

Most of our days, however, were spent doing typical camp things, just add a low table. Occasionally, one of the cute counselors from the Boys’ Cabin was manning that table. I went low on those days. In our downtime, we worked with the nurses on skill-building. I was really nervous to give my own injections, so I relied on my favorite nurse, Lilo, to give them for me.  She was eager to challenge me, though, and kept asking if I wanted to try giving my own. I kept telling her no until, one day, I bravely said yes. I was so scared that something would go horribly wrong, but she sat with me and talked me through each part of the process. Her steady presence gave me the courage that I needed to take that next step and then… it was done! That wasn’t so bad! Afterward, I knew that I had entered a new era of my disease management. Eighteen years later, I bumped into her at a camp event and properly thanked her for how she had supported and empowered me. It felt long overdue. 

The only blight on my week was an educational seminar where the doctor from the ICU that I hadn't liked claimed that type 1 diabetes would be cured “within the next ten years.” Within the next ten years. 

As an adult, I recognize that he was trying to instill hope in a bunch of really young kids with their whole lives ahead of them, but he made a promise that he couldn’t keep. It was one thing for me to accept that I had a life-long disease, but it was entirely another to believe that maybe, just maybe, I didn’t, only to be confronted with that reality all over again when his words didn’t come true. I’m still hurt by his choice to use them.  

My family arrived on a Friday morning while clusters of us reminisced in The Yard one last time. Our belongings were already piled along the walkway, the cabin was freshly swept, and our last injections had been given. There was only one thing left: the closing awards ceremony. 

When signaled, all of us campers piled onto The Log to share some of our camp traditions with our family members and receive an award from the counselors. When it was my turn, Deuce came up to the front and presented me with the award for best staring contests. 

I had started the week unwilling to leave my family, but now the inverse was true: I wasn’t ready to go home. As my dad once again collected my things, I hugged Carly, Kona, Lilo, Gromit, and all my new friends goodbye. Then we walked back up the slope, across the blacktop, and down Cedarbrook Lane toward home. 

I attended that camp every summer for the next seven years. Each time, I got anxious leading up to it, and each time, I was so glad that I went. I could tell countless stories from this season of my life, like when Kiwi and Mo fangirled over my Jesse McCartney nightshirts, or when Crash scared us to death with his dramatic retelling of Old Man Razor, or when my friend Stevie and I spent hours re-hashing all of the camp love triangles (there. were. so. many.), but there is one memory that epitomizes them all.

It was the end of my final middle school week when we piled into the Arts & Crafts building for the long-awaited camp dance, where the lights were bright, and the music was blaring. We had spent the entire afternoon leading up to it filling the Girls' Cabin with the smell of burnt hair and perfume so that we would be in tip-top shape for our disposable camera photo shoot. That evening, we danced, we reminisced, and we took a mandatory juice break. 

It was a great time.  

For our last song of the evening, the guest DJ switched on “Don’t Stop Believin’” by Journey. As the familiar “dun-a-dun-a-dun-a-dun-dun-dun” of the piano set in, all sixty of us formed a circle around the room, put our arms around each other, and began shouting every word as if we had written it ourselves. 

“Just a small-town girl living in a lonely world! She took the midnight train going anywhereeeee.” 

That night, we wanted to believe in something. We wanted to believe that anything was possible, including a cure for our disease. And so, this became our anthem. 

“Don’t stop believin’! Hold on to that feeling!”

For those four minutes and eleven seconds, every single one of us was captivated by the spontaneous magic of hope. 

“Streetlights, people-o-o-oooooohhhhh!”

We left in a daze, tired and happy. 

They made “Don’t Stop Believin’” our camp slogan the following year. It still feels really special to have been a part of camp history in that way. 

After graduating as a camper, I became a counselor-in-training for one summer before ultimately becoming a member of the broader GCC family as an alumna, volunteer, and lifelong supporter. The cedar bark chips that welcomed me on my first day now smell like home. 

I’ve had the privilege of sharing camp with others who’ve gone on to enjoy it as much as I do, including my brother, who later applied to be a counselor at my encouragement. He spent four summers at camp and now serves on a volunteer basis. 

Turns out, Joannie was right. 

When I came home after that first year of camp, I was newly empowered and ready to take over my medical care. I shared this with my parents and medical team, who agreed that I was ready. So, at ten years old, I became my own doctor, nurse, and nutritionist. I’m glad I made this choice for my own independence, but I didn’t realize at the time that it was also satisfying my desire to control the uncontrollable. As soon as the keys got turned over to me, I took my disease behind closed doors and stopped asking for help, even when I desperately needed it. 

Part of this had to do with my earliest conviction that I would not let my disease define me. I never wanted people to know me as the girl with type 1 diabetes. I wanted them to know me as me. However, I quickly started realizing that people had questions, and I wanted to be the one to answer them. At the beginning of my fifth-grade year, I asked if my teacher would help me share my disease with the class and educate them on how my experience might look different than theirs. For example, I had to leave class early to give insulin, and I had a special drawer in my teacher’s desk for snacks and medical supplies. I was nervous to proclaim my illness to the class in a way that might make them see me through its lens, but they were gracious and promptly moved on.  

That same year, I was invited over to my friend’s house, who I had a major crush on (for those wondering, his name was Wyatt). It was the first time that he and I (along with another friend) would be hanging out away from school, so I was pulling out all of the stops. The devil was out to get me, though, because I woke up that morning with terribly high blood sugar that made me feel thirsty, fuzzy-headed, and like my whole body had been hollowed out and replaced with cotton. Everyone experiences high blood sugar differently, but I know that a high blood sugar is bad when I can feel it in my legs, and boy, did I feel this in my legs. My mom even commented that my breath smelled “fruity,” a sign of when high blood sugar veers toward ketoacidosis, while smoothing my hair into place. I didn’t want anything to interfere with my day, though, so I just shrugged her off and turned away. 

I spent the afternoon with my imaginary boyfriend, despite feeling sick for the entire time. Before leaving, his mom pulled me aside and told me that I was her favorite and that she was rooting for me, and I agreed with her. It was a major win, but it came at a cost, and I knew that.

During the school year, my teacher went on maternity leave and was replaced by a substitute, who I was less fond of. One Friday morning, I arrived for our celebratory bike ride around town after completing a unit on bike safety. I had signed up to be in a group with my friends well in advance, and it was being chaperoned by my friend’s mom, who knew me well. I was in a huddle with my friends who were nearly ready to leave when Mrs. Berquist came up to me and said that I would need to join her in the slow-paced group so that she could monitor me. We had been preparing for this field trip for weeks, but this hadn’t come up once. I looked at her, incredulous, and reminded her that my friend’s mom knew how to help me if something happened, but that I was the one primarily responsible for my care. She didn’t budge, though, and I was crushed. For the rest of the day, I was subjected to hearing all of the fun stories from my friends about how they zoomed through the streets, while I mentally recounted the abbreviated route we had taken to ensure our timely return. 

This was the second time in my life where I had been publicly othered by an adult who should’ve known better, and it felt horrible. In hindsight, I wish that she had talked to me much sooner so that my parents, medical team, and I could have made any necessary decisions (or clarifications) to ensure that I could have fun with my friends. This was a formative experience in my life, but I didn’t get to enjoy it. I think about this example sometimes when considering inclusivity because it highlights that sometimes we think we are doing the right thing by including someone in something, when our approach is actually causing more harm. 

A year or two after that, Dr. Drury-Brown told me that she was leaving OHSU and moving with her family to North Carolina. I was devastated. My entire experience with type 1 had centered around her and Joannie’s wisdom, and now I was losing half of that duo. It felt like losing a family member. I cried for weeks after she left, including one very dramatic sob sesh beneath my kitchen island.

After her departure, I shifted care to Dr. Lisa Madison, who I had resolved to hate. I think Dr. Madison sensed this, or perhaps outright knew, because she came in eager to win me over. I kept my arms metaphorically crossed for the first few appointments, but I eventually relented. It helped that she, too, understood my vision, respected my independence, and let me make deals about blood draws. These often sounded like, “If I promise to schedule an eye doctor appointment, can I pleeeaaassseeee wait another few months to do my labs?” Though I live in a world of blood and needles, I am still unbelievably squeamish and deathly afraid of getting my blood drawn. What can I say? I contain multitudes. 

However, what really won me over was her uncanny ability to stick her foot in her mouth. During one appointment, she was trying to gauge if we could do a urine test, which is even worse than a blood draw for those of us who are skilled at holding it and have performance anxiety. She asked if I was on my period, and I answered honestly that I was. 

“I thought so,” she muttered under her breath while glancing at her pager. 

Wide-eyed, I looked at my mom and then responded with, “Excuse me?!” 

“Oh, no, sorry! That was for another patient!” 

Eventually, I looked forward to our time together because I knew that somehow it would always devolve into comedy.

Dr. Madison supervised many of the students at the teaching hospital, so I often had someone else sitting in or performing part of the appointment. Most of them didn’t impress me, but there was one guy who I vibed with instantly – he had an afro, shared my taste in food, and was down for me to give him a hard time. He was also competent, which helped. Sometime during the appointment, he told me through laughter, “You are the funniest patient I’ve ever had.” I have never felt prouder.  

Though the transition had gone more smoothly than expected, I still missed Dr. Drury-Brown. Thankfully, we kept in touch – at first via regular email updates and then via social media. She eventually moved back to Portland, and we still see each other every now and then, occasionally passing notes through my brother at camp. I will always be thankful for her – she was exactly who I needed, exactly when I needed it, and it feels very special that we’ve stayed connected all these years. 

I became eligible for an insulin pump around the same time that Dr. Drury-Brown left, and I transitioned care. Having learned a little bit about insulin pumps from my fellow campers, I opted for the Medtronic model and spent a couple of school-free days with Joannie in Portland learning how to use the menu, change my site, and troubleshoot any problems. My mom joined me and got to wear a practice pump in solidarity. 

Before a pump, I was giving four to five injections per day via syringe or insulin pen in either my arm, abdomen, or leg. This included one dose of long-acting insulin to regulate my blood sugar throughout the day and multiple meal-time doses of short-acting insulin to account for carb intake and correct high blood sugar. With a pump, I was now wearing a tubed device the size of a pager that connected to my skin via a cannula that sat beneath a sticky patch. The cannula had a needle when inserted via an automatic device that I then removed, leaving only the thin, flexible drip line underneath. Instead of receiving both long- and short-acting insulin, my pump was now exclusively equipped with short-acting insulin, which it delivered consistently throughout the day and at mealtimes. Instead of daily injections, I now used a new set (insulin reservoir/tubing/cannula combo) to change my site (where the cannula is located) every three days, using my abdomen, hip, or arm as primary locations. 

My new pump allowed me to dose more precisely, which meant that I no longer needed to follow a carb exchange routine. My mom and I celebrated this by going to our favorite Tex-Mex restaurant in Portland, Esparza’s, and ordering their sweet potato pie. To our great sadness, Esparza’s no longer exists, but I have other recs if you need them :). 

It was weird adjusting to having a device on my body at all times, especially when my tubing would get caught on a doorknob or my pump would dig into my skin while I slept, but the added flexibility made it worth it. It also helped having supportive teachers, like Mrs. Swensen, who allowed me to leave their classes earlier for lunch so that I could spend a few extra minutes with the school nursing staff making sure that everything was functioning properly. 

By that point, the school nurses and I were great friends. We caught up every day before lunch and waved to each other in the halls. The rule follower in me hated having to leave class early (sometimes awkwardly because I simply couldn’t will myself to leave without stated permission), but Ms. Porter and Ms. Fontaine made up for it with our pleasant daily visits.

Middle school was a little different than elementary school in that kids were more inclined to say stupid things. Some would hear of my disease and go, “Oh! My grandpa died from that!” Others found it appropriate to share that their distant family member had their leg amputated. Sometimes, I had the energy to tell them that they were probably talking about the other diabetes, but that it wasn’t helpful conversation either way. Other times, I just politely smiled and walked away. 

One day, a classmate shared a story of a time when she was hungry at a carnival and didn’t want to go find her parents, so she told one of the vendors that she had diabetes so she could get free food. My eyes betray me more often than I’d like, so I am sure that the “Really?!” was written all over my face. I didn’t even use the diabetes card (except with my family when I was trying to guilt them – I mean, c’mon, you gotta have some perks in this life), and here she was bragging about being a liar who gave the rest of us a bad name. How rude.

 

A few weeks before my first day of high school, I started sleeping a lot more and getting out of breath more easily. I assumed it had something to do with normal hormonal changes, so I left it alone. However, the weeks passed by, and it slowly got worse. I opted to skip my freshman orientation, hoping that doing so would help me rest and prepare for the days ahead. 

On the morning of my very first day of high school, I got up, got dressed, and then crumpled into a heap on my bed. My cute brown dress never saw the light of day. We went to the doctor that morning, where I was diagnosed with pneumonia and prescribed antibiotics. I spent the next two weeks almost completely bedridden at home before returning to school. Because type 1 diabetes is an autoimmune condition that can compromise my ability to fight infection, I was used to getting sicker for longer than other kids my age. But this felt different.  

My friend group had already shifted by the time I returned to school. While everyone else was neatly settled into high school life, I was frantically trying to figure out where my classrooms were so that I could make up assignments. It took me several weeks to get caught up and about two months before my lung capacity allowed me to fully participate in PE. I felt embarrassed having to respond with “no” every time my teacher asked if I was ready to join in. 

The new freedom of my pump made it so that I no longer needed to draw attention to myself by leaving class early – instead, I drew attention to myself by not being in class at all. Not long after my pneumonia, I got sick again… and then again. I missed 36 days of school that year due to physical illness and the crippling anxiety that came with it. It got so bad that I started avoiding going to school for a day or two longer after an illness simply because I wasn’t ready to confront my own otherness. Feeling isolated and anxious, I found solace in my delayed discovery of One Tree Hill and its emotionally fraught storylines. Some days, I would hole up for hours at a time watching episode after episode in an attempt to will my own world away.

My illnesses had the most impact on my biology class with Mr. Hyde. Though he seemed understanding on the surface, his responses to my emails were terse, and I could almost feel the weight of his disappointment when I was in class. This was excruciating for a people-pleasing perfectionist like me. Though I desperately felt like I had something to prove, I did it quietly and avoided all eye contact. I ended that year with straight A’s, but I didn’t feel proud of myself – I felt ashamed. 

My illnesses also reinforced my fear of doctors and contributed to a deep paranoia about getting sick. I had already learned what it was like to walk into a building and leave with a life-altering diagnosis, and the thought of that happening again scared me. I also knew what it was like to spend years being poked, prodded, diagnosed, and assessed. I was tired, scared, and distrusting. The only people that I was willing to let care for me were my doctors at OHSU, but they were an hour-and-a-half away. 

One day, my parents decided to take me to urgent care because I was experiencing severe nausea and prolonged illness. The doctors assessed me and determined that I would need my blood drawn (great). Before long, two nurses led me down a hallway to what seemed like a closet, where they plopped me in a corner despite my inability to sit up straight. Just before drawing my blood, they said that they didn’t need too much and asked if I would prefer a finger prick. I told them that I would, assuming that their suggestion meant that they would only need a drop or two. They then proceeded to milk my finger for several minutes, while lamenting that they couldn’t get enough blood (you think?). While slumped over, I asked if they could move a nearby trash can toward me because I feared that I was going to throw up. They did, then proceeded to fill their vial with whatever blood remained in my finger. They never communicated clearly with me or changed course. After fifteen minutes or so, they let me go, and I stumbled out of the closet alone and in search of my parents. Though this is perhaps the most memorable example, it wasn’t the only time that I felt dehumanized and used by a medical professional who wasn’t mine. I carry this trauma with me and often feel afraid to confront it, but I hope one day that I’ll be able to. 

I’ve been complimented on my steadiness or bravery by various medical professionals over the years, including the dentist who honored my request to be present by removing my wisdom teeth without anesthesia. Sometimes I wish they knew that my bravery is posed – it’s a learned skill that I use to survive. 

This season of my life changed me. I still get sad on sunny spring days because they remind me of how it felt to be alone while the rest of my world went on without me. I still avoid running into certain teachers. I’m still remarkably anxious about getting sick. I still feel the unresolved grief of my past every time my throat scratches. I still watch One Tree Hill as a comfort show, despite its horrendous portrayal of type 1 in season three. And, I’m still afraid of most doctors. It helps when I can have a loved one there with me to catch my tears. 

Eventually, though, my health started improving. By senior year, I was mostly back to “normal,” which was a miracle because it allowed me to participate in various activities that I would have otherwise missed out on. I believe that God knew that and healed me, even introducing me to garlic capsules, which were the only things that helped me to avoid getting sick during that time. The more you know. 

During high school, I got connected with the district nurse who championed me at every turn. She invited me to a district-wide meeting where I taught leaders how to use glucagon (a life-saving injection that rapidly raises blood sugar) and asked me to mentor two younger students who had recently been diagnosed with type 1. This disease can feel so lonely, so it helped to have other people to share my story with and invest in. I hope that they found some benefit from it, too.  

In 2016, I traveled to Cuba for a short-term study abroad program with my university. It was a hot day in Miami when we returned, and my blood sugar is sensitive to heat. That evening, we were wandering around looking for food when I started experiencing a sudden and intense low blood sugar. I’m normally able to hide my low blood sugars from others pretty well, but this one was so bad that I found the nearest bench and immediately sprawled out. Without asking, my friends sprang into action – two raced to the nearest hotel for hot chocolate, others picked up palm leaves from the ground and started fanning me with them, and still others sat beside me to make sure that I was ok. Once I confirmed with them that I was fully improved, we continued on, but they kept checking in with me throughout the night to make sure that I stayed well.

That single moment meant more to me than any of them will ever know because it taught me what friendship really means. I had had bad lows before, including one very scary one where I could literally feel my body dying, but rarely had I let anybody into them. One of the few times I tried, my friends turned to me and half-sarcastically said, “Well, are you going to die?” When I told them no, they turned back around and carried on with their business. 

But these friends had taken a different approach. I wasn’t an inconvenience to them – I was a person that they cared about and wanted to help. They responded without me asking them to, and, in doing so, reshaped my understanding of how love from friends should feel. This freed me from the friendships that had been dragging me down and established a new barometer for the kind of friend I want to have and be.

 

Despite this display of kindness, I continued wearing hiding the realities of my disease like a badge of honor. The following summer, I was on a walking tour in Paris on another short-term study abroad trip. Once again, it was a hot day with lots of low-intensity exercise (another blood sugar sinker), and my numbers started to drop quickly. Perhaps it was residual trauma from being othered, perhaps it was my own preference to not be defined by my illness, or perhaps it was something else, but I slowed toward the end of the pack, discreetly downed my glucose tabs, and then continued on with the tour as if nothing had happened while quietly snacking on a fruit bar. I knew that I could barely walk, but I didn’t want anyone else around me to know that. 

That evening, I was out with our professor, Rob, and a couple of friends in search of live music. While out, I noticed that my pump had a low battery, which prompted them to ask about my disease, so I decided to share my low story from earlier in the day. Rob turned to me, shocked. He and I were buds – he had been with me for most of the day, walking and chatting, and yet he had no idea that I had been struggling. I could see the concern register in his eyes over my deception, but I just shrugged and looked at him like, “What else do you expect me to do?”

I wasn’t worried about my pump battery because I knew it would last until we got back to the hotel, but dear sweet Rob was determined to find one for me (I think he felt some residual guilt), so he kept his eyes peeled for a convenience store to duck into. Once spotted, he stepped toward it before turning to me and asking, “What’s the word for ‘battery’ in French?”

You see, Rob didn’t speak French, and neither did I, but some of my fellow travelers had mistakenly thought I did because I was able to read it decently well (meaning, I knew which direction to take for the metro). His question presented me with a choice: I could be nice, or I could laugh. I chose to laugh. 

“Batteria,” I responded in the most American accent I could muster. 

He nodded, then hopped off the curb and dashed across the street. Obviously, I followed closely behind. 

From the back corner of the store, I watched as he walked up to the counter and stammered, “Umm… s’il vous plaît un… batteria?” 

The gentleman turned toward him, confused. I stifled a laugh. Rob looked at me. I shrugged back at him. 

He tried again, this time using his hands to act out what he was looking for, “S’il vous plaît un batt-e-ri-a.”

The gentleman responded in English with, “A WHAT?!” 

And that was the moment Rob knew. I burst out laughing as the gentleman grabbed a pack of batteries from behind the counter and handed them to Rob. Thankfully, Rob was a good sport (and continued to be, since I wouldn’t let him live it down). 

My pump warranty was up by the time I came home, so I joined the masses and began my journey with a continuous glucose monitor, also called a CGM or sensor, by trying out Medtronic’s new closed-loop system. In theory, this new system was supposed to use my blood sugar readings from the sensor inserted in my skin to automatically adjust my insulin rates and increase my time in range. This technology was new for me. I had avoided wearing a CGM for years because I didn’t want another device on my body. In trying this new system, I hoped that the sacrifice of more devices would reap dividends in better blood sugar control. 

That didn’t happen. 

It had just been me, Joannie, and whoever I brought with me in previous pump appointments, but this time, Medtronic had sent a representative. This was a new system for everyone, and even Joannie was still learning the ropes. I don’t remember the representative’s name, but I would share it if I could because she was awful. Despite having type 1 herself, she was so set on selling me the product that she neglected to answer any of my questions honestly, ignored my bodily autonomy, and belittled the way that I cared for my condition. Even Joannie was caught off guard by her abrasiveness. 

Not only that, but the system itself was an epic failure.  The sensor was so hyper-sensitive, and also wildly off-base, that it would alarm literally every time it thought my blood sugar was even slightly trending upward or downward (WHICH HAPPENS A GAZILLION TIMES A DAY BECAUSE FLUCTUATIONS ARE NORMAL). It would wake me up multiple times a night, alarm during class, and distract during work functions – pure torture for someone who’s trying to fly under the radar. To make matters worse, I couldn't silence it. 

This would be frustrating regardless, but I feel my blood sugars well – I do not need them to be loudly communicated to me at all times. I had managed so much of my disease intuitively up to that point, and now that was being stripped from me and replaced with misleading data. 

The sensor was also large and painful, exacerbating issues with scar tissue and bleeding that I had had for several years. Often, I would bleed extensively after inserting it. Always, I would be itchy and uncomfortable after placing the sticky patch over it to keep it in place. There is no question in my mind that this system was designed without ample input from people who actually have this disease. 

Not long after, I ripped the sensor out with Dr. Madison and Joannie’s blessing and decided to just use the pump with a standard glucose meter. The system had been overhyped, and I think both of them felt bad for those of us who wound up being used as guinea pigs for a deeply flawed set of devices. 

I was now in my early 20s and nearing the end of my pediatric tenure. Dr. Madison kept me on until I was 22, and then I transitioned to an adult endocrinologist in the same clinic. It was time, but it was also really sad. Fortunately, Dr. Madison is a regular at camp too, so we’ve stayed in touch. I know that even still, I could go to her if I needed anything, including a laugh. 

As soon as possible, I abandoned my decade-long loyalty to Medtronic and switched to Tandem, another insulin pump company that many of my friends were using. Tandem also had a closed-loop system, which scared me because of my previous trauma, but it helped that they partnered with a reputable CGM company that many of my friends, including my close personal friend Nick Jonas, endorsed. This eased some of my fears, so I gave it a try.

The difference was night and day. This system delivered on the promise of the previous one by actually making my life easier and reducing my mental load with this disease. Unlike the other system, I knew this one was designed with type 1s in mind. The results reflected quickly in my A1c, a measure of average blood sugar for the past 2-3 months, which dropped from 7.5% to 6.5% in three months. For reference, someone without type 1 is usually below 6%, and someone with type 1 can be as high as 13% if they are struggling with blood sugar control. This was the first time I had been below 7% in my life. It was a miracle. 

The pandemic set in shortly thereafter and instantly spiraled me back toward those many fearful days in high school. Fortunately, I was interning for a program at OHSU that was particularly supportive because their express aim was to improve healthcare delivery for children with type 1 diabetes and other complex chronic conditions. Even so, those months and years damaged me, as they did many of us. 

Do you remember the death tolls that news outlets would publish? They read something like this: So and so, age x, died on this date and had x number of underlying conditions. I would read these and wonder, why does it matter if someone had an underlying condition? Does that make their death any less heartbreaking? Any less preventable? In some ways, I felt like the thoughtless approach of these reporters turned the “and” into a “but.” So and so, age x, died on this date, but don’t worry, they had an underlying condition, so you’re still good! If you read between the lines, they were saying that you only needed to grieve for the loss of those without underlying conditions because they were the lives that truly mattered. 

For those of you who are otherwise healthy, remember the confusion that you felt at the beginning of the pandemic when science was evolving and best practices were unclear. Then imagine living in that confusion while daily being confronted with headlines and stories that claimed your life mattered less than everyone else’s, but that your disease heightened your chance of losing it. Add to that the disappointing realization that many in your own community would rather stand on their own flawed political ideals than make a simple sacrifice to spare you, and you have a window into what the pandemic felt like for many of us. It was terrible. 

I learned very quickly during this time that many people think of those with chronic illnesses as perpetually knocking on death’s door. I couldn’t live with that misunderstanding, so I used my relatively small voice and posted a photo of myself – young, healthy, strutting through campus – to remind those listening that this is what chronic illness looks like, too.  

In the years since, I’ve heard many people complain about the mask mandates in schools. Every time, I’m taken back to my own childhood and the many years I spent sick. I know intimately the complex trade-offs I would’ve had to consider in deciding whether to go back to school with my friends or stay at home to avoid infection. And that’s just me – some children were far more vulnerable. Don’t get me wrong, I understand the flaws in the implementation of these mandates as both a human and a public health professional, but there was a part of me that was relieved for those kids every time they were extended because it meant one more day where they didn’t have to feel like the other.

Years later, my therapist was quick to dismiss the trauma that this period of life had caused. But it was real. Is real. No one should ever have to feel like their life is disposable. 

This time in my life was exhausting for another reason, too: grad school. Let me tell you, I was not prepared for how emotionally taxing it would be to study public health as someone with my disease. Almost every day, I sat in classrooms, physical or virtual, where someone talked about “diabetes.” Almost every time, I raised my hand to ask, “Can you please specify what type of diabetes you are referring to?” I knew the answer, but I wanted them to know too. Almost never did any discussion of “diabetes” have anything to do with my disease. 

Specifying types can seem like a small or even nit-picky thing, but it’s not – type 1 and type 2 diabetes are very different diseases (plus, there are other types like gestational diabetes). I have long said that my disease is not the least understood in the United States, but it is one of the most misunderstood. This is exacerbated by interpersonal conversations, public-facing presentations, poor portrayals in TV and media, and “diabetes” jokes, which reduce public awareness, create barriers for accessibility, and prevent funding for critical research. 

I’ll give you an example. In 2019, I attended an annual concert at my university that took place in the football stadium. I knew that they were saying not to bring bags, but I also knew that I needed to have my snacks and supplies on hand, so I brought a small, clear bag with me. Upon entry, the event staff told me that I couldn’t have my bag with me, and I explained that I had type 1 diabetes and needed to have my supplies on my person. Again, they told me I couldn’t and that I would need to check my supplies (including snacks to treat a low blood sugar and my blood sugar meter) at a different entrance. Y’all… in another world, I might’ve left, but Jesse McCartney was playing, and I didn’t want to argue. So, knowing full well that it was a violation of the Americans with Disabilities Act, I walked over with my friends to the other entrance, checked my supplies (and by “checked,” I mean they put a sticky note on my bag and tossed it into a bin), and prayed that my blood sugar would cooperate. This is why it matters for all of us to speak honestly, correct misunderstandings, and raise awareness for my condition and others like it so that the burden of advocacy does not have to exclusively fall on the few most impacted.

These misunderstandings frequently present themselves in media too. One of the most well-known episodes of One Tree Hill features a character with type 1 diabetes. Well, it features a character with “diabetes,” implying that it’s type 1. In her pivotal scene, she is suddenly pale, weak, and slumped over when someone comes up to her, assesses the situation, and loudly announces that she has diabetes and needs her insulin. 

Nice try, but incorrect. Those are symptoms of low blood sugar. Insulin could kill her. 

Millions of people watched that episode, and those millions of people got life-threatening advice for how to care for someone with type 1. This happens all the time, which is why I am so grateful for organizations like Hollywood, Health, and Society, who work with writers, showrunners, and producers to disseminate accurate information to large audiences. But it starts with you – all of us who know better have the responsibility to do better.  

By the end of my grad school tenure, I was encouraged by how many of my classmates were distinguishing between the different types of diabetes, even sometimes asking guest speakers to specify before I could. I hope that at least some of them have carried this forward because it matters so much. 

Speaking earlier of Nick Jonas, I went with my best friend to the Jonas Brothers as my first concert back post-pandemic. That evening was already beyond because Nick finally sang “A Little Bit Longer,” the rallying cry of the type 1s, after many years of me patiently waiting. Side note, I almost made this song the title, but the vibe was just a little too staring out a rainy window for this post – but still go listen! 

Halfway through the concert, I noticed that my sister, Ahrey, was trying to FaceTime me, which was strange because she never FaceTimes me. I texted her right back, but the internet was overloaded, so it took a minute for us to get a hold of each other. When we did, I learned that she was currently front row in the friends and family section at the same show because her friend just so happened to be friends with the sound guy for the Jonas Brothers who extended a last-minute invite. Then she said, “Hold on a sec, I’m going to see if I can get you guys down here.”

Moments later, her friend appeared in our section and handed us floor tickets. Now, technically, we were breaking the rules because he and Ahrey received wristbands and no longer needed the physical tickets, so we were re-scanning them to get in. But I mean, c’mon, haven’t we established that we’re all friends here anyway?! 

Within minutes, I was standing less than six feet away from Nick, Joe, and Kevin in an uncrowded, exclusive section of the floor. I learned that night how quickly I am willing to disrobe because as soon as Nick appeared before me, I ripped off my jacket, held up my arm, and showed him my sensor. He smiled. I died. 

For the next hour-and-a-half, me, my sister, her friend, and my best friend danced and sang and laughed and fangirled and put our jackets back on. I have confetti, a guitar pick, and a video of Nick smiling at me as souvenirs. My mom asked me the other day what the highlight of my type 1 journey has been, and I told her this.

I started travelling again as soon as I felt comfortable after things started to settle because I needed to get out and see new things. My least favorite part of preparing for any travel is packing my diabetes supplies because it feels like high-stakes monotony. My doctors generally recommend that I bring at least 2x the number of supplies that I would need if I were home, but I tend to bring more, since I somewhat frequently experience pump site failures. Things I pack include: pump sets, pump tubing, reservoirs, syringes to load the reservoirs, my pump charger, sensors, my blood sugar meter, lancets, alcohol swabs, adhesive remover wipes, insulin, Baqsimi (a nasal spray version of glucagon), and lots of extra snacks. It’s a lot to remember, and I’m always afraid that I’ll forget something major even though I haven’t yet. 

My second least favorite part of traveling is getting through airport security. For a while, I wasn’t able to go through the airport security scanners because they would interfere with my pump, so I had to get a pat-down. Now, I avoid going through any X-Ray technology, but I can go through the body scanner as long as I let them know that I have an insulin pump beforehand. Once through, the TSA agents pull me aside and ask me to rub my hands on my insulin pump so they can swab them and check for explosives. They also pat the area down, but it’s much faster and less thorough. They then put the piece of paper that they swabbed me with into a machine and, once clear for explosives, let me go on my way. 

Like with everything I’ve written about so far, it makes a huge difference who the people are. I’ve had TSA agents who see that I know what I’m doing and just let me do my thing as quickly as possible. I’ve also had others who were less accommodating by asking me to re-complete certain steps of the process so they can keep a closer watch or by requiring a more thorough pat-down or bag inspection. Some have been very kind, and others have made me feel like an inconvenience. I particularly appreciate those who recognize that this is no more enjoyable for me than it is for them – the best we can do is be kind and efficient so that it’s easier for both of us.  

For my 28th birthday, I traveled with friends to Phoenix, Arizona. We stopped and grabbed breakfast on the way out of town, and I dosed quickly for mine in the car without double-checking the amount. As we neared the Portland airport, my sister said that she needed to use the restroom, so I pulled over and let her out at Best Buy. I was sitting in the car with my friend when I happened to look at my pump and see an open notification telling me that I had reached my maximum bolus (meal-time dosage) of 25 units nearly an hour-and-a-half ago, causing my insulin to automatically shut off. That was impossible – I would’ve only needed a few units for my breakfast, so there’s no way I would max out, but the panic set in anyway. I quickly went through my pump history and realized that instead of dosing for 23 grams of carbohydrate, I had accidentally dosed for 203 grams of carbohydrate. For the first time in my life, I had overdosed on insulin… by a lot. 

I knew that I had to remain calm, but I also knew in that moment that people die from this. 

Immediately, I ran to my trunk and began shoving every single sugary snack I had brought with me into my mouth, desperately trying to make up the difference while deeply fearing that it was too late. On the shuttle over, I sat with my eyes glued to the graph on my insulin pump, watching as each new number rolled in and praying that I wouldn’t die. Miraculously, and I mean MIRACULOUSLY, I never dropped below 70 mg/dL. 

There are so many “If I hadn’t…” moments from that day. If I hadn’t needed to pull over… If I hadn’t checked my pump when I did… If I hadn’t had extra snacks on hand for travel… If the insulin hadn’t shut off or if it had kicked in sooner… maybe I wouldn’t have made it. It was God alone who kept me alive, and, for that, I am eternally grateful. 

I sipped some juice on the flight and then grabbed some extra carbs once in Phoenix, and that was that – the rest of the trip went off without a hitch. But the fear stuck with me, and now I always confirm the amount before dosing.

In April of that year, there was a nationwide insulin shortage that terrifyingly exposed my dependence on an inconsistent system. Thousands were impacted, but I’m lucky to have people in my life who made my experience less challenging than some, especially my family friend Laurie in Texas. She immediately reached out to her neighbor, who just so happened to have several extra vials of the exact insulin that I use, and shipped them to me overnight. Fortunately, the shortage resolved more quickly than expected, and I was left with several extra insulin vials that were nowhere near expiration. 

A few months later, I faced another travel hurdle: I was moving to London for three months and needed to travel with all of my supplies because I wouldn’t be able to access the national healthcare system. However, my prescriptions only covered what I needed in the moment, and my insurance was expiring before my trip, meaning that my insurance company was less likely to grant a travel waiver for additional supplies. Not a great combo. Several phone calls, doctor visits, and MyChart messages later, I decided to pay out-of-pocket for my pump supplies, which was only possible because I didn’t have to pay for insulin. It turns out, those extra vials from April ended up being exactly the amount I needed for my time in London. Coincidence? I think not. 

In mid-2005, I developed a skill: I learned to drink water really quickly. Two lifetimes later, I have new skills like looking at a plate and being able to estimate the number of carbs, changing my site in strange places (cars, public bathrooms, etc.), and politely correcting people when they say I can’t eat a cupcake (I’m looking at you, Bill). I also sometimes find juice boxes in my pockets, though I’m not sure that’s a skill. 

But life with this disease isn’t easy.  I can no longer use my arms as pump sites, and my stomach has noticeable purple scars from previous insertions. The adhesive from my pump is itchy, and the cannula is often uncomfortable. Most days, I feel some impact, however large or small, of my blood sugar rising or falling. And a few days ago, I almost tripped over a broom in the middle of the night while hobbling to the fridge for juice. I am constantly calculating, constantly adjusting, and constantly correcting, which complicates my relationship with food by turning everything into an equation. I do all of this while still trying to live a normal life. 

Have you ever heard how biting through a carrot requires as much force as biting through our own pinky finger, but our bodies protect us from doing that? Well, that isn’t true, but I like the concept. Recently, I’ve noticed that I unconsciously pause before inserting a new site – like my fingers literally can’t press the trigger, even though I want them to. I think it’s because I’ve experienced so much pain that my body now wants to protect me from it. There have been moments in my life where I’ve given an injection or changed my site only to be covered in blood. There have been other times that were less bloody, but far more painful as I felt the needle tugging through layers of tissue as I pulled it out. That fear now manifests in my body as a protective pause. 

On top of this, I feel lonely. Only 0.5%-0.6% of the US population has type 1 diabetes, so making friends is hard. I am grateful for my camp friends, some of whom I’ve known for nearly two decades, but I don’t see them often. My mom once told me that I’m not alone in this disease, and I snarkily responded with, “Well, I literally am.” I’m learning now that though there may not be many people in my daily life who share in my exact struggle, there are people who care, and I need to be better about letting them in.

With all of these things, I feel exhausted. I’m exhausted by the physical realities of type 1 and the emotional complexities. I’m also exhausted by recent battles with insurance over what they will and won’t cover – a new challenge in this time of unemployment. Lately, I’ve been taking walks around the neighborhood without my pump on and timing showers between site and CGM changes just so that I can have a break. There are things that I will want to improve and spend more time on when I can, but my goal right now is to stay engaged and alive. As long as that’s true, I’m good.

As I look to the future, I worry about kids and relationships. My kids will be more likely to have my condition, and I fear for them. I used to feel a lot of guilt over this until my mom said, “Well, are you happy you’re alive?” “Yes.” “Then your kids will be too.” The journey to bring children into this world with type 1 is more challenging and used to deter many people from trying, but I’m thankful for how much more accessible that journey is now.

In high school, my teacher facilitated an exercise to help each of us identify what we'd want in a future partner. She presented a handful of scenarios, and one of them was, “Would you date or marry someone with a chronic illness?” I had never considered before that someone wouldn’t want to be with me because of my illness, so the whole conversation threw me for a loop. Now, as an adult, I feel that insecurity deeply. My sickness isn’t hidden, so when you commit to loving me in sickness and in health, that commitment starts right away – and it involves you being the one to trip over brooms on your way to the fridge for juice. 

Twenty years in, and I’m still that little girl pre-diagnosis who wanted so badly to be okay, that she pretended that she was. In some ways, I wonder if my reticence to let my disease take up space has less to do with shaping my identity, or even controlling my circumstances, and more to do with my fear of being loved for and unthreatened by the fullness of who I am, even when others deem it inconvenient. 

Type 1 diabetes is not even close to the first thing that I think about when I think about myself, and yet it has profoundly shaped my worldview. I am grateful to be living with this disease when I am and where I am, especially since it’s still a death sentence for so many globally and domestically. I am in awe of those who came before me – navigating needle sterilization, imprecise urine tests instead of blood sugar readings, single doses of insulin that formed a bubble under their skin and absorbed over the course of the day, and insulin pumps the size of bricks just to stay alive. I am in awe of them, and I am so grateful that I was not them. I also grieve for those in this world who daily have to ration insulin and testing supplies, and that’s only if they have access to those things to begin with. It is a privilege born of wealth and opportunity that I get to be so many things before I am someone with type 1 diabetes.  

I am also incredibly lucky to have the body and the medical support that I’ve had. I can feel my highs and my lows – not everyone I know can say that, and some have lost their lives because of it. I wake up in the middle of the night when something’s wrong with me instead of sleeping through it. I’ve had insurance that has allowed me to benefit from modern technology in ways that so many others will never experience. Since being diagnosed, I have not been re-admitted to a hospital once. I have never experienced prolonged ketoacidosis. And, my blood sugar has never dropped so low that it required glucagon or other medical intervention. I have seen those who weren’t so lucky, and our stories are very different. 

All of these things are true, but it doesn’t make it any less hard. A therapist once told me that my body would never betray me, but that was a lie. My body has betrayed me. If I’m honest, I’m afraid to grieve that reality because I worry that I would never recover. How do you grieve something that’s still in your life? I fear, sometimes, that if I fully processed my emotions, like actually went there, that I would end up resenting my disease to my own detriment. 

Lately, as I struggle to make sense of it all, I’ve been thinking about John 9, where Jesus heals a blind man. Verse 3 reads, “'Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him.'’’ God, on this side of healing, I pray that your works would be displayed in me, too.

If you've made it this far, congratulations! You did it! I didn’t write this for pity or for accolades – I don’t need either. I wrote this to connect with you. This is my story, but I hope in some ways that it touches pieces of yours. If you don’t have type 1, you are now substantially more educated about my disease. And, if you do, I hope you feel seen. As we move forward together, please remember the following:

1. Distinguish between different types of diabetes, even when it seems like overkill.
2. Don’t assume you know things when you don’t. I’ve had several well-meaning people jump in to describe type 1 to someone only to get it wrong. Don’t be that guy. 
3. Be mindful when you’re trying to relate to others – I get that your “low blood sugar” because you ate lunch 30 minutes late feels like a big deal, but that’s not the same kind of low blood sugar that we’re talking about. 
4. Champion type 1 causes, including research and insulin access, by supporting the organizations working to improve these things through fundraising and advocacy. Breakthrough T1D, Beyond Type 1, and Type 1 International are all great starting places for this. 

Thanks for listening xx

Abbey

Titular Song: Guys… you should really know this one by now.