I’m Not Afraid of Death, But I’m Afraid of Dying

C Mag Perspective


I don’t know death. I know it’s there, waiting around the corner. But I’ve never felt it. What’s perpetual but distant does not scare me; it can’t. I don’t fear what will come.

I’m afraid of dying because I know what it might be like: the burning pain in my limbs, darkened vision, a growing hole in my stomach. I’ve felt it before. With it is the fear — the immediate danger of the pain, coupled with the pain of the danger — that I know all too well.

Since I was 11 years old I’ve understood that I’m faced with higher odds of dying than the average kid. According to a statistic published by the Juvenile Diabetes Research Foundation, I have a 1-in-20 chance of dying from hypoglycemia, or severely low blood sugar. I don’t know anyone who has contributed to that statistic, but I do know plenty of people who’ve had hypoglycemia-induced seizures. It’s a constant possibility in my life.

Both type 1 and type 2 diabetes stem from a deficiency of insulin in the body. Type 1 involves a lack of insulin production, while those with type 2 diabetes face a diminishing insulin sensitivity. Insulin is essential to survival — without it, your cells have no way to absorb nutrients. Instead, your body will burn fat for energy. When this is prolonged, it will burn muscle, including your heart. As a severely underweight 11-year-old, I was diagnosed after a weekend camping trip. During the trip, I drank an excessive amount of orange juice, culminating in an unfortunate vomiting incident. A well-placed suggestion from a family friend led us to the emergency room a few days later. My blood glucose was three times what’s considered normal.

In the following months, a lot of things changed. I learned to count carbohydrates by sight and to give myself upwards of five daily injections. Then I got an insulin pump and a CGM (continuous blood glucose monitor), and I faced a whole new learning curve. After gaining 25 pounds, I was finally at a healthy weight. I no longer look sick. Aside from the small pink medical device I keep clipped inside my pants, I don’t think anything suggests there’s something wrong with my health. Those who have not witnessed it could never fully comprehend how much personal care diabetes takes, because most of it goes on behind the scenes. Diabetes is an invisible illness in almost every way.

I’m hesitant to suggest that my struggle is in any way unique. I know that people have problems that others can’t see. What’s different, though, is that despite the volatile nature of diabetes, the entire treatment of my condition is in my own hands. I make at least 20 medical decisions per day, most of which have potentially life-threatening consequences if not administered correctly; I only see a doctor every three months to help realign my decision-making. Living with diabetes means I risk and save my own life every single day.

If a cure were available, there’s no doubt in my mind I’d take it, despite the incredible support of the diabetes community. A lot of people feel that the things they have gained through diabetes-related experiences are more valuable than a life without our common chronic condition. Sure, there are certain parts of my experience I wouldn’t give up for anything — the friends I’ve made and everything my dad’s type 1 diabetes tech company has done for the community, for example — but that doesn’t mean I have any desire to continue to subject myself to unnecessary pain, fear and risk. No amount of sentiment is worth that. Yes, my condition has shaped my identity, but that doesn’t mean it is my identity. I am so much more than my cells, more than my body’s betrayal. My wellbeing is too valuable to sacrifice for the idea of solidarity.

Everything I do — every decision I make — is tied to my health in some way. It’s exhausting. If I choose to prioritize perfect diabetes care in my life, I’ll never have peace of mind. Those who concern themselves with absolute control have no other focus. That’s not a lifestyle I’m willing to commit to. And yet, if I were to forget my diabetes entirely and allow myself to live unburdened by concerns for my health, I’d die. I’d lose my vision, or lose my legs, or my kidneys would fail. While those complications are unlikely, their prospect is terrifying. So my reality is a ceaseless tug-of-war between my physical and mental wellbeing. If I’m healthy, I’m unhappy. If I’m happy, I’m unhealthy. I can never win.

All of this is not to say that I’m living a terrible life. Given the negativity my diabetes brings to my life, it’s easy to say I’d rather be without it. The constant obstacles inhibit my every day to extents I will never fully understand. But the challenges of diabetes themselves together present the greatest and most important challenge: carrying on. The ultimate defeat would be allowing my diabetes to control my abilities entirely. Having spent five years insisting I could live the same life as anyone else despite my diabetes, I struggle to admit the ways in which it does control me. I wish I weren’t limited, but the reality is that I sometimes need understanding or accommodations. And that’s OK. I remind myself every day that I’m allowed to ask for help.

Despite my limitations, I have to allow myself to take risks. I have to know that I’m not trapped by my condition, that I can still live something of a normal teenage life. My fragile mortality distorts my reality; if I want to live peacefully, I can’t let death scare me. I don’t want to just sit around and cry about how I’m going to die, so I don’t let myself think about it. I’m not one to avoid my feelings, but in this case it’s vital to my survival. To conceptualize a serious fear of death would be to let it take over my entire life. Diabetes has taken a lot from me, but that’s one thing I won’t allow.