A new type of life: Type 1

On Aug. 6, 2018, I was admitted to NewYork-Presbyterian hospital after three weeks of pure misery. I was constantly dehydrated, incredibly weak and very exhausted. I did not know what had been plaguing me for the last few weeks, but I knew I felt the worst I ever had.

In what is now a blur to me, doctors rushed me through the hospital. They pricked my finger, took my blood, and rolled my bed through hallways and elevators. This insane maze of white hallways led me to the Intensive Care Unit, where I received my diagnosis of Type 1 diabetes. I didn’t know anything about diabetes prior and was so confused about what led to me receiving this diagnosis, lying in a hospital bed in the ICU with doctors looming over me.

Six years later, I still don’t have answers to all those questions. No one really knows where my diabetes came from; it does not run in my family, and there is no general scientific agreement as to what can cause T1D to come to the forefront.

While I lay in that hospital bed six years ago with these questions in my mind, I really wondered how I would be able to go on with my life, how drastically things would change and if this diagnosis would take over my entire life.

I have to think about diabetes on a consistent basis. A Stanford study claimed diabetics have to make 180 more decisions a day than your average person. With the advances of technology, and with that claim not making mathematical sense, I don’t believe that inflated number to be true, but that is not to say my diabetes isn’t a significant burden on my everyday life.

To back up, Type 1 diabetes is an autoimmune disease that stops your pancreas from creating insulin, a hormone necessary for blood sugar regulation. I have to give myself insulin every time I eat while also getting it through my insulin pump 24/7. I must ensure it’s the right amount because too much means low blood sugar, and too little means high blood sugar. It is a very tricky balancing act.

In a physical sense, my body just doesn’t work the same as most people’s. My blood sugar is more vulnerable to adjustments based on physical activity. Something as simple as taking a long walk can significantly affect my blood sugar. I struggle to monitor my blood sugar and make sure it is going smoothly despite whatever other activities I want to partake in. In a physical sense, I am affected in a mostly scientific and statistical way — I can tell you why and what causes everything — but those have ripple effects on other aspects of my life.

From a mental standpoint, this is where most of those alleged 180 decisions come into play. Constantly, I check my blood sugar — now, thanks to technology that is as simple as lifting up my wrist and looking at my Apple Watch — and make mental decisions about how to adjust my lifestyle and insulin intake accordingly. In addition, carbohydrates play a large part in the mental toll my diabetes takes.
With every food that I eat, I have to know exactly how many carbs are in it. This has brought me to develop an odd skill — one that many diabetics have — where I can look at almost any food and know already how many carbs are in it. My mind is always racing 24/7 to ensure that I can maintain a good lifestyle.

Physically and mentally, there is nothing especially unique to my experience, but there is a highly personal emotional toll that comes with living with diabetes.

Diabetes can weigh heavy on you. It is a lot to manage. When you add it on top of school and friends and everything else the average student has to worry about, it becomes incredibly difficult. When on film sets, I am always very worried about my insulin pump beeping and disrupting everything; as a photographer, I am all about capturing a moment but always living in the next to keep on top of things; within my academics, I am dealing with my tests and diabetes, in friendships I am dealing with eating with friends and diabetes, and so much more.

“Diabetes burnout” is real. Unlike most other kinds of burnout, where you shut down or stop getting stuff done, with diabetes, you can’t afford to do that. Your life is on the line. You have to keep going; you have to try and find a way to get to the other side, but without any time to cope with it in any substantial way.

It is exhausting.

Six years ago, when I first received my diagnosis, I didn’t know where I would be. Today I wonder where my blood sugar is going constantly, but AI and medical technology make that easier. It has become a subconscious thought for a lot of the day, but it is very nice to have other “diabuddies” to go through the hard times with.

Six years is an incredibly long amount of time, but at the same time, it is so short. I know I have many more years to live with diabetes — regardless of what fantastic cure options brilliant scientists around the world are exploding — and I have to figure out how to live with that. But that is exactly how I live with it; I live. I keep moving forward day after day, constantly acknowledging the balance between how my diabetes is a large part of me, but at the same time, it does not define who I am. I can’t let it consume me, regardless of how tough it can become.

To take it, conquer it and try my absolute hardest to overcome it is how I keep going.

Six years later, nothing makes sense, but the one thing I do know is life lives on whether you’re ready or not, and I will keep living with it.