Out of Control — On Living with Type 1 Diabetes
Every day we make predictions about what is going to happen. We predict traffic patterns, what things will take place at work, who we’ll see during the day, and the list goes on. We are hard-wired to constantly construct a mental model of the world around us.
You’ll realize after a while, that we cannot predict everything. Sometimes our system fails us. Inevitably, things will go the way you didn’t want them to.
It’s ok when something doesn’t go as you plan. It took me a while to be able to tell myself this. I always wanted to control everything.
I lost control when I was in High School. After a few weeks of extreme urination, thirst and hunger and having lost 15–20lbs, my parents decided to take me to the doctor to figure out what was wrong. The doctor told me my pancreas was shutting down and I was going to need to take insulin shots for the rest of my life. They diagnosed me with Type 1 Diabetes and sent me out the door with some insulin and a few needles.
It was like getting a set of keys to my body. I needed to be in the driver’s seat of the car, while everyone else was on autopilot. They told me I needed to control my blood sugar every day or I will die. If I go too low I could have a seizure or go into a deadly coma. If I go too high, I could have permanent neurological damage.
In the mornings I would take a shot of insulin before going to school. It contained long-acting and short-acting insulin to counteract the carbohydrates I would eat during the day. I would need to dose it just right. Not too much, not too little. Just the “perfect” amount.
The problem with this one-shot approach is that the world is chaotic and always changing. School lunches were different each day, I would eat at different times, sometimes I would have gym and exercise which would affect blood sugar levels.
Thus, managing T1 diabetes is not as simple as just taking insulin. I need to supplement my nutrition during the day with snacks or additional insulin, and constantly monitor my blood sugar with finger pricks and my glucometer. Initially I was very embarrassed about having to eat a snack, go take more insulin, or check my blood sugar in front of others, so I didn’t sometimes. The internalized shame about my diabetes would keep me from taking care of myself.
In one of my first diabetic seizures, a friend had come over to hang out, but I wasn’t anywhere to be found. I was on my parent’s bed having a seizure and going in and out of consciousness. My father told me he had to pour juice directly in my mouth so I could come back to the plane of reality. During my episode my vision was cloudy and I couldn’t speak coherently. Extreme hypoglycemia feels like you’re living in a dream, but you don’t understand what’s happening around you and you don’t have the normal control of your bodily functions. At least that’s how it sometimes feels for me.
These episodes were minor some days, and very severe other days. In the beginning I wouldn’t talk about them to people. I was initially very embarrassed after they would happen. I felt like I was an inconvenience to everyone around me. I would just bottle up all the physical and emotional trauma I would experience in each episode.
Another severe diabetic seizure was when I was at work during an internship. I had taken my insulin before going to lunch with some of the interns. I don’t remember eating much, I think I had a salad. When I returned to the office, I remember fading in and out of consciousness unsure of what to do. I didn’t have a snack and I didn’t want to tell anyone what was going on. I lost consciousness, and I remember waking up to about 4 paramedics in the room staring back at me. They told me I was having a seizure and rolling around on the ground and kicking the office desks. I was then taken to the hospital to be monitored.
Each one of these episodes packed on self-hatred for my diabetes. Why am I diabetic? Why doesn’t anyone else have to deal with this? Why didn’t I have a snack with me? Why did I have to make a scene? Not only was I berating myself with these thoughts of failure nearly every day, others around me were too. It was the 2x multiplier of shame.
My worst diabetic seizure was when I was at home one day planning to go meet up with friends. I had woken up from sleep and realized I couldn’t control my body. I was laying there unsure if this was my last moment of thought I would have. I started to cry and hoped that someone would come find me. Nobody was home, so I had to take matters into my own hands. I rolled myself out of bed, and began crawling towards the fridge where I thought I could find something that would help me regain full consciousness. I think it took me about 30 minutes of crawling to finally get to the fridge where I basically poured a bottle of orange juice on myself because I could not control my hands. I finally regained consciousness and texted friends I was ok. It was one of the most terrifying moments of my life.
Every day is different for me, and many other diabetics I’ve talked to. Some days I feel like I’m in control, and others I do not. I have finally accepted that I cannot be in complete control of my blood sugar and that having diabetes is nothing to be ashamed about. It is who I am. What I can do is try my best each day, and that is enough.
If there’s any advice I would give to anyone newly diagnosed or family members of diabetics, friends, acquaintances — it is to communicate. Both ways. If you are diabetic let people know. They could save your life. If you have a loved one with diabetes, I understand the struggle you go through not knowing what each day will hold. Please be patient. Be kind. This disease is not easy to manage. Have empathy. Understand that life is unpredictable and things can happen. If we all communicate with one another we can seek to understand.
We need to embrace the chaos and messiness of life.
Digital Artwork by Me