I used to have a friend, in college, who couldn’t stand the sound of someone opening a can of coke. That distinctive hiss followed by the characteristic click of the tab being forced down and back up. It reminded him of his childhood. It reminded him of his dad, a severe diabetic, sitting on the couch, watching TV, and drinking himself to death with soda. Letting his sickness take him from the toes up.
My friend told me that, growing up, no matter where he was in the house, no matter what he was doing—reading, listening to music, getting ready for school—when his dad opened a coke, he heard it echo through the house. He felt it. The sound froze him, made him go numb with a combination of despair, sadness, anger and, most of all, fear.
When my dad got Lyme Disease, it was the putzing.
He had this shuffling walk that I could hear from every room in the house. This way of moving things around without ever seeming to move anything forward. He spent hours on unnecessary projects: cleaning the small parts of disassembled machines with Q-tips dipped in gasoline, labeling files he had already labeled, cleaning all his bolts and screws and then organizing them into those throw-away Take-Along containers, newly labeled with a black sharpie. He spent all his time assembling, disassembling and reassembling, organizing and reorganizing, labeling and relabeling.
And I also froze. The sight of Tupperware lined up on the kitchen counter made me want to smash things. Zip ties and new packs of black sharpies froze me with the familiar fear. It was the fear that was different from the anger, though it usually started there. It was the fear that was different from the sadness, though it usually ended there.
Every sickness is its own story, and even people who suffer from the same disease have unique actions and reactions. But there are also universals. There are ways that sick people—especially people sick with a chronic, debilitating disease—tend to act. There are ways that those who care for the sick tend to act, too.
I’ve already talked about the silence. It’s difficult for the sick to communicate their sickness. How they feel and what they need. It’s often just as difficult for the caretakers to speak. To not let the relationship degenerate into a seething silence, full of tacit resentments.
And then there’s this. It’s common for the chronically ill to begin to engage in illness behavior, to take on the sick role. To find ways to fall into their sickness rather than fighting it—until it’s difficult to distinguish between symptoms and causes. And it’s common for caretakers, even the most loving, most empathetic caretakers, to reserve some small measure of blame for the sick. To harbor a belief, deep down, that the sickness is partially a moral failing. A lack of discipline.
Now...I wish that I'd spent less time thinking that my dad should be better and more time helping him get better.
(Reposted from August 3, 2012)