Everything here is just like a simile, and almost completely alliterative.

Friday, August 30, 2013

Switching on all the Lights

My mother believes her body is out to get her.

In fairness, her body has been trying to kill her since she was 23 years old, when she was first diagnosed with lupus. Systemic lupus erythematosus turns the body against itself. If AIDS can be explained as the massive failure of the body's immune responses, lupus is the equally massive overachievement of the immune system, in which the body's own defenses recognize internal organs as intruders, and start to eat them. There isn't a cure.

Back in the 40s, when Flannery O'Connor was diagnosed, they sent you home to die. In the 70s, when my mother was diagnosed, they gave you choking doses of steroids that could slow the disease's progress, if they didn't kill you first. The steroids didn't manage to kill her, and neither did the lupus; for some reason best known to God, the killing machine in her body ground to a halt after it had eaten her kidneys and just as its maw was stretched wide for the final bloody chomp. It was like that moment in the Ten Commandments when Charlton Heston stops the terrible machinery of the pyramid-building just in time to save Martha Scott from being crushed to powder beneath the huge stones.

I watched this scene in the Ten Commandments a lot when I
was a kid. I'm sure that doesn't explain anything.
The narrative of the almost-death, the almost-absence, the I-could-be-gone-again-at-any-moment, dominated my childhood. Because that's the thing about lupus; just as it can stop at any moment, so it can restart, for no reason at all. The switch can be flipped, the gears can whirr again, and the assembly line you are strapped to can start chugging you toward the steel teeth once more. I say all this to make it clear that when I say my mother is a hypochondriac, that doesn't mean her body isn't actually trying to kill her, because it is. Like the woman who survives a mugging only to visualize an attacker behind every tree, my mother has no more reason to trust the medical establishment, pharmacology, or her own body.

She hyperventilates if she experiences gas pains. A slight fever is a certain indicator of death, and any pressure in the chest means she is having a heart attack. If she is winded on the stairs, there is fluid in her lungs that the scans just aren't seeing; if her eyes burn, she is having a drug reaction. Sometimes, to tell the truth, I feel as though the lupus did kill her—or at least, the part of her that I never got to know, the part that was joyful and fearless, the part of her that didn't keep careful maps of shark attacks in a hundred-mile radius whenever my children go to the beach, the part of her that didn't know how many armed robberies occurred at every fast food restaurant in her city, that didn't see an asteroid hurtling to earth behind every cloudless day.

On a practical level, this makes her a pain in the ass when she is actually sick.

I've been spending the summer helping her through post-surgical recovery from a knee preplacement (one of the joys of longterm steroid use being its destruction of your joints) and let me tell you, we are getting on like a house afire. Several houses, actually, maybe the whole block. With flaming people hurling themselves out of upper windows screaming, and dead pets.

People who say sickness brings people closer together know jack shit about being sick. Or maybe they're right, and I'm just an asshole. Pull it together, I wanted to shout at her last night in the emergency room. We were in the emergency room because she had decided that she has stomach cancer, because the pain meds have been tearing up her stomach for days. And with every reassuring pat I gave, I got angrier. Why couldn't she be brave? Why did she have to cry like that? Why couldn't she just suck it up? And even if she were dying, why did she have to act like death was the single most awful thing that could ever happen to someone?

As a parent, there's really only one thing I want to teach my children, and it is this: Be not afraid. In both Hebrew and Christian holy texts, the first moment of a theophany is always those words: Be not afraid. Fear not. God is the mother walking blithely into a darkened room ahead of her child and flipping on the light switch. See? I told you there were no monsters! If we have one job as parents, it must surely be to say those words over and over and over to our children, in capital letters: Be Not Afraid.

We say it because we know that fear is the single most destructive path we can walk as humans. It's the path that leads to hate, ignorance, and darkness. God is constantly peeling our tight fists away from our faces and leading us into the sunlight. See what a beautiful world I have made for you. Be not afraid.

We should not ignore, in this discusion about the destructive power of fear, that other great holy text of our days, Finding Nemo. My kids will tell you my ability to watch this movie without breaking down in tears is next door to my ability to kill and dispose of a cockroach unaided, which is to say, never going to happen in this dimension or any other. Because Nemo is all about fear, of course: Marlin's fear for his son, Marlin's fear of loss, Marlin's fear of threats from the world beyond. I just wanted nothing to ever happen to him! he shouts in despair, and Dory just looks at him and says, well, that's kinda weird, because then. . . . nothing would ever happen to him.

Nemo is also about how your dad and his gay best friend are not
going to get together, ever, and you should probably stop wishing it. 

As I was holding my mother's hand at two in the morning in the emergency room last night, I wanted to say so many things to her, none of which I said. I wanted to say, a lot has happened to me, and all your fear never bought me a single minute of safety. I wanted to say, I wouldn't trade any of it, because it was all wonderful, and messy, and terrifying, and mine. I wanted to say, let go. Be not afraid.

But I didn't.

I argued with doctors and nurses, and cried with her when there was pain, and gritted my teeth at her when she complained, and wrapped her in a warm blankie when I didn't know what else to do. Soon enough, it will be me small and helpless and curled on a bed, and one of my children will be writing some blog about how annoying I am, and why can't I just be a better person. I don't know. There isn't some pat ending here. None of us wants to die, and all of us do it, and it sucks. I guess we just keep swimming. I guess we try not to be afraid. I guess we swim with the current, and bounce off the jellyfish, and hope like hell we can get where we need to go, and hang onto the people we need to love.

But I'm afraid.

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