When I was four years old, I was thrown into adopting a lifestyle that required close management of basically everything I ate and did. I was conditioned to live between the lines of in-range and out-of-range blood sugar readings to strive for optimal diabetes management and health. The magical trifecta of insulin injections, food intake, and physical activity made living well possible. But it was often easier said than done, and sticking with a tight regimen was a tricky balancing act. The unpredictability and inconsistencies of day-to-day life (especially as I got older) meant even more deliberate and constant attention to the details of my body and my diabetes care. That idealistic space between the lines was an encouraging place, an invigorating place, a comfortable place. It was also a place that I knew was only temporary, so I made the most of it before the inevitability of getting “kicked out” would happen.
Despite my best efforts and intentional work to maintain my diabetes management, long-term complications crept in. I experienced retinopathy and kidney failure. Even after successful eye surgeries and a kidney transplant, I was afraid of what might come next. Generally optimistic and always faith-filled, I still couldn’t help but worry that staying between the lines wasn’t good enough anymore - time was seemingly against me, the clock ticking faster and faster like I was sprinting a 50-yard dash in a gym class relay. Living between the lines of my glucose goal no longer provided the reassurance that it once did. I was tired and feared which shoe would drop next.
All-or-nothing thinking is generally not a productive or sustainable solution to a situation. But, when presented with the possibility of a pancreas transplant, my mindset quickly shifted in that all-in, black-and-white direction. I knew a transplant would transform my life if it all went as intended. I wouldn't have to spend every waking moment fighting for my place between the lines of "too much" or "not enough." It would mean my long-term health would improve because of consistently stable blood sugar levels. Without having to make time for the full-time job of diabetes management, my routine would ease up, and my connections between body, mind, and spirit would be stronger. I decided to pursue this path.
I went through the compatibility and approval process. Then, early in 2022, I had the pancreas transplant. What was once just a hypothetical possibility became my new reality. My transplanted pancreas has taken over the 24-hour-a-day responsibility I have handled since my diagnosis. Finally! I was liberated from the rigor of trying to manage that which could really never be totally managed. My blood sugar readings are now between the lines of someone without diabetes day in and day out, no matter what. Just as my identity has shifted from a person with diabetes to one without, my lines of healthy living and well-being have shifted and broadened. I am simultaneously mindful that rejection can happen anytime but that my biomarkers are stable right now. I'm learning to trust that it's okay to let go of trying to manage, while being proactive and involved in my healthcare.
There is liberation in having lines that are more like guidelines. Rather than dictating my direction, the lines now gently guide me, keeping me on the right path. Thanks to my transplant team at the University of Pennsylvania Transplant Institute and my donor’s family, I am now free to choose my own path, to make my own lines - and, yes, to re-establish and follow them as I go. Aside from the considerable risk of organ rejection without daily anti-rejection medications, functioning between the lines is having the flexibility to do hard things and not needing an excuse to say no. Without the constant diabetes dialogue in my mind, I can wholeheartedly make the most of that space between the lines - the space of optimum productivity and quiet stillness. It is the space where both perfection and deviation reside.
Anne R lives in Lancaster, PA, with her husband and their three school-aged children. Diagnosed in 1981, Anne thrived for decades with type 1 diabetes. Since her pancreas transplant in early 2022, she has been fortunate to experience life without diabetes. In addition to sharing her story through her writing and speaking, Anne is busy balancing work, church involvement, and her kid's activities. She is most at peace sitting in the warm sun at her family's lake house in New Hampshire.