I’ve been a planner for as long as I can remember. Loved by teachers and the parents of my friends, I was a punctual, diligent, smart and often pretentious child. These were habits I exhibited even before I was diagnosed with Type 1 Diabetes at the age of 13. Today as a 22-year-old, I take the lead as the organizer of outings, dinners, parties, and get-togethers with my family and friends. Knowing what will happen in a given day, week, or month, brings me a sense of calm. The confidence I draw from obsessive planning is largely tied to my need to organize exercise and meals around my blood sugar requirements. Unfortunately reality doesn’t care about my plans, and is more often unpredictable. One lesson which managing Type 1 Diabetes has taught me is that resilience to the unexpected is more valuable than a rigid plan. No amount of struggle, stress, or agonizing over my schedule will produce perfect results-- however, certain strategies and habits can increase predictability and reduce sharp fluctuation in blood sugars. Largely, my strategies around managing Type 1 Diabetes have been developed through self-teaching and trial-and-error. Like any craft, it’s taken years of practice to refine the skills and intuitions which bring tight blood sugar outcomes. Like any craftsman, I began as an amateur.
On the second day of eighth grade, I was diagnosed with Type 1 Diabetes during the annual physical required to play on the school soccer team. Looking back, that day was the first of a lifetime of days spent worrying about how Type 1 would affect my plans. I sat uncomfortably on the crackling sanitary paper in my pediatrician’s office while my parents prepared to drive me to the hospital, feeling more helpless than I ever had before. I’m sure they felt helpless, too. I wondered if I’d be able to make soccer tryouts next week. Did I do this to myself? Why now, Why me? That day, Type 1 Diabetes began to seep into my consciousness and infiltrate my identity. In the following week a pastel-colored hospital room at Boston Children’s Hospital became the setting of my first existential crisis. I struggled with how to maintain the vision of who I dreamed of becoming in this Post-Diagnosis Universe. My first night away from the hospital, we bought Chinese takeout for dinner and arrived home on Cape Cod late. There was only one light on in the kitchen, as if neither myself nor my parents had enough energy to turn on another one. My Dad set the oven to heat up the food, and my Mom began flipping through the book King Carbohydrate, which they gave me upon dispatch, in search of Chinese food nutritional information. There was some disagreement about the carb counts, and I remember that my parents argued, and I cried, watching from a stool. I was devastated that they were fighting over how to best help me get through dinner. While this was one of the low points in my early diagnosis, looking back I feel proud of how far I’ve come -and how we’ve grown as a family- in the ten years since it occurred.
Through middle and high school, this helplessness persisted. I felt embarrassed and ashamed of a disease which I’d done nothing to earn. Unsurprisingly for a teenager, I didn’t want to feel different- especially not disadvantaged. Yet anxiety about my blood sugars plagued school lunches, soccer games, my first parties, and my friendships. I was a straight-A student, but diabetes was unlike any academic test which I’d ever faced. The failures that struck me were physically and mentally exhausting, and gradually degraded my self-confidence. They were hardly offset by the victories- the tricky thing about Type 1 Diabetes is that when you succeed, generally you just feel normal. Becoming captain of the soccer team, playing lacrosse and running track, performing in school productions, participating in the band and the orchestra, and ranking seventh in my class upon graduation seemed hollow accomplishments in the shadow of what felt like an insurmountable burden. I saw myself as defective, damaged, and at the mercy of my illness. My resiliency waned during this time- a run interrupted or midnight low would throw me into temporary despair. Simultaneously, I refused to acknowledge the victories which did arise, like the progressive decrease in my A1c or athletic success. A rigid anxiety manifested in me over the initial years following my diagnosis, borne of the necessary routine and worries I faced each day to manage it. My mind grew locked into a preoccupied state, and each day I lost more bandwidth to enjoy experiences as I focused in on surviving them. When I was accepting into Carnegie Mellon University in 2014, I was struck by conflicting fear and excitement about making new friends, living on my own, and encountering college social scenes.
As I developed interests at University, I took small steps towards viewing Type 1 in a more positive way, which I believe was directly tied to the liberal arts education I pursued. My undergraduate classes expanded my outlook through learning about a variety of human experiences, and I embraced the idea that my perspective was ultimately one in an infinite and impermanent mass of them. History and anthropology courses showed me that while people share aspects of the human condition through time and space, it is their specific environment or culture which shapes their outlook. In parallel, I experienced greater diversity at Carnegie Mellon than I had in the wonderful, but sheltered, community of Cape Cod. Academics at CMU who I met not only celebrated their differences, but actually studied their conditions or the conditions of marginalized groups in context of the “typical” world. I learned that I had agency to develop my own schema- which meant I could shape how my chronic illness fit into my life. Gradually, I reworked my relationship with Type 1 Diabetes. I began to view it as a factor that influences my perception of the world, but doesn’t dictate my worth or determine my greater purpose in it. By adopting this perspective, it has become easier to recognize when I succeed as well as be kind to myself when I don’t.
My views shifted, and I developed strategies to maximize my control over Type 1 and minimize its impact on my daily life. A few major changes, including eating low-carb and mostly whole foods, tracking my exercise, pre-bolusing more precisely for meals, and adding a Continuous Glucose Monitor into my routine have greatly improved control over my blood sugars and therefore expanded the flexibility of my routine. I am pushed more regularly to keep to healthy habits because I feel an immediate impact when I do not. In this way, Type 1 is an incredible motivator for realizing health and fitness goals.
I am not grateful for this diagnosis, and there are days where I feel absolutely defeated. Yet, I strive to understand Type 1 Diabetes as an opportunity or possibly a superpower. For example, I’ve memorized large amounts of information related to regulating my sugars, such as how certain temperatures affect my blood sugar during a workout, how my body reacts to products from alcohol to breakfast cereal, and dozens of carb substitution tricks. Through years of manually operating an internal organ 24/7 and micro-managing each gram of nutrient which I ingest, I’ve come to understand my body and how it reacts to food with an incredible intimacy. Type 1 has helped me recognize the potential of my physical and mental strength, and required me to develop a mindset focused on prioritizing my body’s needs.
My Game Plan involves perspective, self-respect and flexible discipline. I seek perspective on diabetes management-- to view it not as a burden but as an opportunity to focus on my holistic health and cultivate a unique relationship with my body, food, and exercise. I aim to respect myself when I fail and recognize when I succeed, remembering that perfection isn’t realistic. I endeavor to reach my health and fitness goals and to hold myself accountable to them, but allow enough flexibility to live a full life. Although Game Plans aren’t foolproof, what makes a valuable player is their adaptability, work ethic, and attitude. I am a runner and fitness enthusiast with two half-marathons under my belt, a lover of pickles, dogs, craft beers and travel. I also manage Type 1 Diabetes, which is a huge responsibility requiring a deep skill set, but which has pushed me to realize my ability to thrive in the face of a challenge.