If there’s one thing I’ve learned in my life, it’s that illness is isolating. My family and I are very close, but being the one who is actually sick puts me in the unique position of having to be there for every doctor appointment, every hospital stay and every medical test. I’ve heard having a chronic illness is like having a full time job and I wholeheartedly agree with that statement. A lot of the time I keep the feelings I have about being the chronically ill person to myself, because I don’t want to further burden my family and I’m afraid my sense of isolation is real, that no one will understand what I am going through.
And it feels like the real truth is all stuck inside of me. Even though I hate how medical stuff seems to be a taboo subject, I treat it as a taboo subject too. Because deep down I’m afraid if I admit I’m having trouble, that everything hasn’t been all great since my transplant, the person I admit it to will think I’m a loser who can’t deal.
The truth is I am frustrated, angry, and really, really scared. My CK level (an indicator of muscle damage) is above 2900. Normal is under 100. Even though I know muscle damage is a part of my Glycogen Storage Disease, it is still freaking me out. My heart doctors are concerned and changed one of my medications because it can cause muscle problems.
Sometimes I feel like if I pretend everything’s okay, it will be. Phrases like “fake it till you make it” and “it’s all about having a positive attitude” come to mind. I see the merit in looking on the bright side of things, but something’s wrong and I can’t pretend everything’s all right with me. I’m sad, I’m scared – and it is easier to be angry. Anger makes me feel in control. Anger helps me keep from breaking down. Anger is a handy distraction.
Except anger doesn’t always work. I’ve cried before and I will cry again. And when I cry, it is scary as hell. It reminds me of a scene from my favourite movie, Garden State. Andrew, Mark and Sam meet this man named Albert whose job it is to guard a geological fault that was found accidentally when a mall was being built. No one knows how far down the fault goes and it can’t be explored until the legal battle between the mall developers and the geological surveyors ends.
Albert confesses that at night he goes down into the fault to explore its infinite depths. When Andrew, Mark and Sam are leaving Albert’s place, Andrew says, “Have fun exploring the infinite abyss.”
And Albert says, “You too.”
On their way past the fault, Andrew climbs up onto an abandoned excavator and screams down into the abyss. His friends climb up too and join him in the screaming.
I love that scene so much I have the movie poster of it up on my bedroom wall. It makes sense to me. Often in my life I feel like I am screaming into my own infinite abyss. Whether I’m dealing with the depths of my emotions or facing an unknowable medical situation, living life is exploring an abyss. Albert got it, and I get it too.
But the other thing I learned from Garden State is that while life means exploring the inifinite abyss, it isn’t meant to be explored alone. The only way to cure isolation is to reach out to others. In my experience, not everyone understands what I’ve gone through, but the ones who do make the best friends and excellent fellow explorers of the infinite abyss.