A new normal
In November of 2009, a special election in New York state meant that school was cancelled, so my mom decided to take my sister and I into New York City for a girl’s day. We planned to shop for hours at our favorite stores, stuff ourselves with classic New York pizza for lunch and venture to Midtown Manhattan. Before we left for the city, my mom explained that I would need to give a urine sample to the doctor. Since I had never really had to go to the doctor for anything major, aside from the pneumonia I had gotten in August two months prior, I was skeptical, but I quickly forgot about it as we drove into the city.
Under any other circumstances, I would have been having a blast, but this girls day trip was different. I was too tired to walk around, too busy thinking about when I could get my next bottle of water and too focused on how badly I needed to use the bathroom to really enjoy myself. I tried to ignore how I was feeling and relish the day to the best of my ability, but I passed out from exhaustion the second we got into the car for the ride home.
My first stop when I walked into the house was the bathroom, which had become a part of my normal routine for the past three months, and then I asked my mom for ice cream as a snack. After getting me ice cream, she checked the answering machine on the landline. She noticed she had nine missed calls from the doctor, so she called my doctor’s office back immediately. The next thing I knew, my mom grabbed the ice cream out of my hands as she frantically called my dad, and we were getting back into the car.
After driving for what felt like hours, we arrived at a hospital 30 minutes from my house, where the doctors were expecting me. Yet, unlike the doctors, I was not expecting anything that would happen that day.
As I sat in the hospital bed, feeling confused, hungry and scared, I was told to get comfortable. I was told I’d be there for a while, and I tried my best to tune out the grumbling inside my stomach as the doctors emphasized the importance of conducting tests on an empty stomach and pricked me with needles.
Words were thrown around the room. Words with meanings I didn’t know. Words that scared me: “Juvenile Diabetes,” “type 1,” “manageable,” “treatable, not curable,” “injections” and “pancreas,” just to name a few.
The word pancreas was particularly new to me. I had never used, heard or seen this word before, but the doctors kept mentioning it to me and my parents. While my parents tried to understand what the doctors were saying, their faces scrunched up with concern and focus, I sat in my hospital bed feeling like I was watching somebody else’s life, in disbelief that this was actually happening to me. It didn’t take long for the doctors to realize how lost I was in this sea of new information. After a few minutes, the head doctor sat at the end of my hospital bed and asked me if I was familiar with the game Pac-Man.
Pac-Man is an arcade game in which the player navigates the Pac-Man icon through a maze containing various dots, known as Pac-Dots, and four multi-colored ghosts. The goal of the game is to accumulate points by eating all the Pac-Dots in the maze, completing each level of the game. My doctor told me to think of my pancreas as the Pac-Man icon and the process of how my body functions as a type 1 diabetic as the whole game.
The function of the pancreas is defined as a gland that produces enzymes that are released into the small intestine to help with digestion. It also contains clusters of cells called islets. The cells in these islets produce hormones such as insulin and glucagon, which help to control the level of glucose (a type of sugar) in the blood. Similar to Pac-Man eating the dots, my pancreas needs to eat the carbohydrates that enter my body. Without eating the carbohydrates, my body cannot function properly and move on normally, just like Pac-Man cannot move on to the next level of the game without eating all the dots. Ultimately, Pac-Man will reach game over if it fails to eat the dots, and my body will begin to crash if my pancreas does not fulfill its responsibility of producing enough insulin.
Unfortunately, the doctor explained, my pancreas had already experienced a game over, which means the insulin hormone had stopped being produced and there was a build-up of dots in my body. This build-up was affecting my everyday life. I always felt weak, I could never quench my thirst, I was constantly urinating and headaches were too frequent to keep count.
The doctor explained to me that I would have to manually give myself injections of insulin, which would act as the Pac-Man for my body. The doctor used this analogy to emphasize the importance of taking care of myself — if I wanted to stay in the game of Pac-Man, I had to be constantly focused and win.
The days following my diagnosis, I entered a new world and my life became a large scale Pac-Man game. Every nutrition label became the layout of the game screen. Every time I had food, it became a new level to conquer and overcome. Every time I was able to correctly follow my mom’s lead to fill a syringe — with enough insulin to capture the number of carbohydrates in the food while keeping my blood glucose intact — was a step in the right direction and allowed me to progress.
My house became diabetic-proof. We designated cabinets for all my new medications, a shelf in the refrigerator for my insulin and containers around the kitchen to put used syringes in. My mom hid the Halloween candy I had eagerly collected only a few days before. She would have to come into school three times a day to give me injections and pack me a different snack when people celebrated birthdays.
The challenges didn’t end as I grew older; rather, I learned how to respond to them positively and with perspective. When I was on a trip to Australia a few summers ago, I wasn’t able to go scuba diving with my friends because of my diabetes. Instead of harping on the fact that I had to sit on the boat and watch them swim below the surface, I spent the day snorkeling and learning about the reef.
You cannot technically beat Pac-Man, just like there is no cure for diabetes. But I have learned just how manageable this disease is and that it is possible to live a normal life. It has taught me to deal with adversity the same way Pac-Man deals with the ghosts: finding new routes, taking it level by level, remaining focused and diligent.
Almost 11 years after my diagnosis, I am, like the rest of the world, living during a pandemic. I find myself feeling the same way I felt in that hospital bed 11 years ago: confused, scared, overwhelmed, anxious and unprepared. The fear of having to accept, comprehend and adapt to a new diagnosis mirrors the way we all now have to navigate the COVID-19 pandemic and the start of the school year.
This idea of being forced to adjust to a new normal forces us to question how we, as young people, should approach this new year and this virus in a way that is productive and smart. It is not easy trying to adjust to a new normal, especially when it is a new normal we did not choose. And while analogies like Pac-Man can help one comprehend and adjust to a situation, the work, much like my journey with diabetes, should not stop there. In the coming months, we cannot deny our diagnosis — we must stay focused on the reality that we are still in the heart of a pandemic — because with that negligence comes the obvious truth: game over.