Of Meaning and Monsters: How We Make Sense of the Sickness Within

I note my disease anniversary at some point every year. Actually, I keep track of two: the date of my first MS attack and the date of my diagnosis. Many years separate them. I’ve attached significance to that fact, just as I’ve assigned meaning to a great many things about my MS journey. And I’m not the only one.

Turning MS into a monster

Identifying patterns creates the illusion of control. They keep those bizarre, scary disease symptoms from seeming so senseless and random. Metaphors provide solace, too. For example, we feel better about things if we can turn MS into Spielberg’s E.T., strange and kind of ugly, yet manageable. The friendly monster. Frankenstein’s monster, less friendly but still somewhat manageable is soothed by music and disarmed by kindness. And we all know you can delay Dracula’s bite with a cross and some garlic. But who could ever feel safe again if we saw MS as the acid-blooded, devouring xenomorph in ALIEN, or the vicious Wolfman waiting to tear you to pieces, or the scheming, ravenous Great White in JAWS?  We’d be forever lost in a labyrinth of terror. At some point we have to turn up the lights, brush our teeth and snuggle under the covers to dream sweet dreams.

What things make us choose our monsters? Is it the nature of our individual disease course? Many, many people with MS suffer relatively mild symptoms. Is it that kind of personal experience that leads us to characterize MS as little more than an extraterrestrial stuffed toy? Is your monster a direct reflection of your suffering? I wouldn’t be comfortable drawing such a conclusion.

Looking back

Looking back—still the best way to layer meaning onto life events— the first ten years of my disease course was relatively mild. But that certainly wasn’t my experience of it. In fact, my first neurologist made the mistake of characterizing my condition as mild at the time and I set him straight about how not mild its effects had on me. He apologized. Now I recall those days with longing and sadness, wishing my body could return to that level of ability at that moment in time when I was also younger and healthier and only took an allergy med twice a day. I didn’t characterize my disease in terms of monsterdom, but if I did it wouldn’t have been E.T. What would have fit?

Maybe it would help to examine what I did think of as monstrous. Before age ten I was convinced that God lived in my closet and watched everything I did. Paranoia overtook me and I left the Catholic Church directly after my Confirmation. God the Father, the Son, and the Holy Monster. Amen. At what point does a divine nurturer turn into a predator in one’s mind? Childhood fear of the unknown is the monster under the bed. Our parents thought they diffused those fears by examining the room with us in bright light. But that never helped me much. Once the lights went out, sound and shadow returned.

Disease is the ultimate monster

Monsters are meat eaters. But not only in the literal sense. They rob us of our belief that we control our lives, our bodies, our behaviors. Monsters threaten the human tribe by eliminating some of its members. We live in fear that our extermination is next on the menu. If we are then that proves we are expendable. Not as special as we thought we were.

Disease is the ultimate monster. It chases us from within, consuming us from the inside out. My monster isn’t E.T. or Moby-Dick or the Gill Man in Creature from the Black Lagoon. It is the thing that will likely wipe out all human life someday. Not nuclear weapons or climate change, but a microscopic life run amok. But don’t worry. Monsters aren’t real. We just like to scare ourselves with them from time to time. It’s our way of proving what brave little girls and boys we are.

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