This is the third (parts one, two) in a series about my teenage years, which were spent almost entirely in a state of defiant self-destruction and non-compliance. It is the hardest part to talk about, so the posts will not be posted one right after the other. Thank you for bearing with me.
Rage is a complicated emotion. Sometimes it is straightforward, a response to a slight or an injustice or just plain losing your patience. But sometimes it’s a mask, a defensive response to harder emotions. It’s a whole lot easier to understand rage than to look inward and see what else might be there. There is a host of emotions that come with being a patient. For many of us, whether inflicted by the external or imposed by the internal, there is always what I call the trifecta: guilt, shame, and fear. The three of them always seem to be locked together in a nearly impossible Gordian knot, and they are often the root of why patients act in self destructive ways
The trifecta wasn’t there when I was a child patient. There wasn’t anything to feel guilty about and the fear passed with the recovery from the acute illness. The defensive walls I had started were a way to protect myself from all that comes with being visibly unlike other kids. They could have been left to lie like some Revolutionary Era stone fence that most kids can get over in one step. But with diabetes came a condition that allowed more opportunities for control and the responsibilities that come with it. Put that in a blender with a teenager’s brain and life of immediacy without thought of the future – which I was told I wouldn’t have if I didn’t comply – and you get some pretty out-of-control, purely emotion-driven behavior.
It started small. I was gaining weight even though I wasn’t doing anything “wrong”. So what if I went back to the way it was before? I was ok when my blood sugar was high, and I was thin. Everybody liked me when I was thin. I would just stop taking enough insulin to cover what I ate. After a while I lost about five pounds. When nothing bad happened, I kept going.
But see, after diagnosis I knew I was doing something wrong. Guilt. And I was lying to cover myself, to everyone – parents, friends, doctors. Shame. What would happen if they found out? What would happen if they were right? Fear.
My parents tried to help. They called Lifescan when they couldn’t figure out how I was cheating my glucometer. (Taking a glass of water out to the soccer field and making up three months of blood sugars in one sitting by diluting the blood and manipulating the time and date. Sometimes it came up as testing solution and that one didn’t count.) They enlisted the help of psychologists. There might have been a two-week winter break spent in a lockdown unit at a hospital in Indianapolis. (I told them not to, that would be a waste. I was really, really good at telling people what they wanted to hear. After the two weeks were up, the entire staff absolutely loved me, and I went home to continue exactly as I had been before.) They even found me a good doctor, two hours away. I was too far gone into my own head by then to understand what was being offered and the effort it took to get me there. I just wasn’t ready for him.
This was my downward spiral. None of my behaviors did anything to alleviate the trifecta. Every step I took was down. I didn’t feel good or good about it, but I was stuck, and what was one more step if I was already in it? Besides, I was right. Nothing bad was happening. I didn’t die of a stroke when I was 19. I was still doing well in school, and in fact somehow managed to get myself into an elite college. I would prove to them all that I was the exception to all their conventional wisdom, just like I had with meningitis
Somewhere around age 16, my parents made the active decision to stop pushing me. I can’t imagine how hard that was. But they could see that all their efforts were only having effects opposite from the one they wanted. Exhaustion, desperation, and the need to hang onto their sanity drove that step back.
I get it. I applaud it. And I wish I had known then what I know now, that the trifecta can be a shield or a delaying tactic. Grief for a future that won’t be and the person you no longer are is as sharp and lasting as the loss of a loved one. In fact, it is the loss of a loved one – you.
I never mourned. I shoved it away until that monster of a defensive wall absorbed all my emotions. There was the persona and then there was me, a me almost no one ever saw, and if they did, it was an accident. The ones that did see were with me for so long that I couldn’t scare them away. I was not particularly nice back then, more sharp and cutting. But the wall slips for everyone, and when you measure friendship by decades, there’s no way to be on like that all the time.
Rationality eventually peeked over the wall, driven by unexpected forces. Young and stupid only works when you are young, after all. As you grow up, old assumptions and stubbornness hopefully make way for the truths you can no longer turn away from. That’s where recovery began.