We don’t handle it all that well, it seems to me. Disease I mean, in others. Particularly those awful wasting diseases. The kind that changes the way the sick person looks. The ones that make them gaunt or bloated or just inhibits their movement. Most of all it’s the diseases that bring their own masks for their victims to wear, a replacement of the old familiar persona giving them a brand new face.
As my first wife died we were inundated with well wishers that didn’t know what to say, couldn’t keep their mind off the cancer, and lost focus of the person they had once knew. Rather than wasting away she grew in weight and size, becoming more and more immobile in her corpulent demise. The person doesn’t change, but their friends and acquaintances get more and more distant. It’s almost as if a terrible guilt takes over your friends when you’re sick. As if they contract their own emotional wasting disorder.
We used to call it the “unbearable notoriety of disease.” The tendency for all conversations and thoughts to turn “medical” when you enter the room. Expressions shift to be tinged with discomfort, even laughs and smiles come with a kind of squeaking relief from the unimaginable pressure of being with the sick.
On the other side the affected person slowly closes inward. Their senses, not dulled, are perhaps even heightened. We all have a sense of community and acceptance, indicators that tell us when we are welcome to our human groups and when we are not. Tiny indicators flash when we see those all too subtle movements of expression in others that speak of discomfort, disgust or even horror.
It’s part of the herd instinct, I believe, to turn away from the infirmed. Individuals protect themselves and the herd by distance, either geographical or emotional. Or sometimes, recognizing this primeval drive they seek to make up the difference, to compensate for their own self-induced inadequacy. We can all see that our actions are not completely satisfactory and we surely know the emotions we project. They see them mirrored in the faces and feelings of others.
During the early stages of my wife’s disease our freezer and refrigerator filled with food. Pot roasts and casseroles crowded the glass shelves until only the dimmest of light from the top reached the bottom drawers. “What can I do to help?” became a component of every conversation in every phone call and chance meeting at the market. There was no escape. Some cruel fate was surely waiting for those who missed their chance on seeing me, to inquire as to our needs. Since there really was only so much to be done, I began to defend myself by asking if the inquisitor felt like “cleaning the windows,” “painting the bathroom” or possibly “mucking out the gutters.”
As it turned out I had no takers, not that these weren’t good people but rather because the food and offers are really stand-ins for something more effective. Something we don’t have. Most of us don’t know what to do when a friend is wasting away. We can’t put humpty dumpty together again, so we wring our hands, tear our clothes or bake up a special cardboard and ketchup casserole.
These are the motions of our guilt, the dances of condolence we share. It doesn’t matter that they serve little useful purpose, it’s the thought that counts. Or so we tell ourselves, after all, we have to do something, don’t we?
Unfortunately for the infirmed, this waltz of disease focuses the meaning of their lives away from whatever they tried to be, to whatever the herd decides they are. The herd is hungry for resolution and a return to comfort. Like a communal subconscious the herd acts in it’s own interests. This always seems to shift the focus to the pageantry and customs of bereavement for the living and brings forth the macaroni and cheese of doom.
In this tradition the infirmed become the ritual centerpiece, like the banquet for the sin eater or perhaps a funereal wreath donated by the Kiwanis. No more than that. That role is what keeps them indoors, out of the light of notice and away from the sound of shared guilt. It’s tiring making people feel better about how sick you are, so they hide instead.
It’s the weight of expectations unnamed, the silent pleading of friends and visitors to somehow be forgiven their inability to do anything about your condition. After all who else could offer forgiveness? They want absolution and only the high priest or priestess of disease can give it. So they make their obeseness of food and flowers and hope for salvation. And with every gift of guilt removal the absolver is forced to face their own condition, staring into the relentless darkness of their own future. When the sick are worn from being strong for others, they begin to shun the outside world.
As usual, I have no cure for this communal ailment, no suggestion for societal change, and have as not yet identified the sequence of DNA where this behavior lies. Instead, in the most societally efficient method of detente, I forgive my fellow herd creatures their hand wringing natures, and look forward to my own eventual sheet rock and tuna casserole with curiosity and delight.
Copyright Prentiss Gray 2011