Sunday, June 23, 2013

How to use an invisibility cloak

The kids had formed a kind of semi-circle around my son and me.  Each kid was holding onto a parent’s hand, and I felt the gaze of these dozen or so eyes, as I wrapped my whole body around my seizing son.  It was a gaze of pity.    

I have spent my life trying to avoid the gaze and dodge the stares of people.  I am not sure where this tendency comes from.  Perhaps it is from a life of always being slightly overweight.  Or perhaps I have learned to hate the constant comments and questions about the way I walk.  There is something about the feeling that everyone is looking at me that leaves me loose and unraveled.  Quit looking at me.  Sometimes I picture myself using Harry Potter’s famous invisibility cloak. 

And so here I am in the big gaze, trying to protect us both.  I drape my body over my son’s shaking torso somehow to stop the stares.  It seems a dramatic odd gesture; I know as I am doing it.  But how else can I break the spell?

A parent suddenly thinks better of the group stare and begins to usher people away. “Come, let's give them their privacy, “I hear one gentle mother say.  One child begins to cry and asks if he will die.  Another, voices a worry that my son is crazy, because it appears that he is.

And now instead of a semi-circle of staring kids and parents it is a scattered group of people all looking at this unfolding medical drama out of the corners of their eyes.  I can feel that the convulsions are slowing down. It is something intuitive that only I can sense after being party to so many seizures.  I back my body off of his and gaze at his limbs willing them to stop jerking and finally they do.

My son is fifteen, covered in acne, awkwardly dressed, kind of greasy from a night of camping, braces coated in food.  I love him, and he disgusts me at the same moment.  At a time when he should be vital, staggering around the camp ground texting friends, bored with little kids and life, he is helpless on the ground, bits of twig and leaves sticking to his hair.  The seizure is over.  He is unconscious.  He needs to sleep.  It lasted four minutes and forty two seconds a parent calls from somewhere. I make a note of it.

He will sleep in my lap for a few minutes while  I hold court with the parents, explaining what I need.  I get water and cookies and strong fathers help him up by the arms. 

Later, weeks later, when the same scene replays itself for a large group of my family, a cousin pulls me aside to tell me how glad she is she saw what she did.  I have empathy for you she says.  And it is one of the most important things anyone has ever said to me.  “Finally, I understand what you go through.”

And now here I am, poised in front of my computer, with the latest insult in all of this.  With a touch of a key, I press upload, and I send a video to YouTube that makes me cringe a bit.  It is five minutes and 17 seconds long. We taped one of his seizures: the one he had last week on the tennis court. I tag it "private" so no one will see it. But having it up there, seems in violation of the fundamental parenting rule:  first, do no harm.   I myself cannot watch it and stop the video after about 20 seconds. 

So the irony is, I hate the gaze, but yet, I know the witness of these events is important.  I need you to see him.  I need you to acknowledge what sort of a life we must lead with this involuntary horror that drops him to his knees almost weekly.  Please understand, I think, as I both cover his body with mine and feel grateful that someone else can see it.  Please understand, I think, as I cautiously watch the view counter on youtube go from zero to one.  

Amy for the PGM

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