Tuesday, April 28, 2015


My fingernails are bloody from picking and biting.  A trait that my Nanny left me, anxiety visible all over my hands.  I'm in a fog.  A heavy, strange fog.  It lifts slightly in the morning as the sun is rising and the day is new but as soon as she wakes, the wretching and screaming begins and I am reminded.  Yesterday it was 10 hours of non stop screaming except for a few moments of random, neurotic giggles; the kind that are more like seizures than genuine results of happy. 
I don't think most people know this or recognize it.
The fact that anguish walks around among you. 
 It's hidden beneath smiles and "I'm good, thanks for asking's."  It is in front of you in the check out line and beside you at a stop light.  Anguish smiles and fidgets through the days.  It walks and eats and breathes inside of bodies that are weary, frightened and conflicted.  Anguish reveals itself in uncertain moments.  Sometimes crying in the parking lot after leaving the check out line; sometimes late at night in the bathtub alone.  Sometimes anguish is visible on the faces of people you love, when the burden weighs heavy and the choices are hard.  Sometimes anguish hides beneath denial, coping to survive just one more day before the bridge breaks and the ground collapses undertow. 
Anguish causes broken skin around fingernails.
Biting and picking and nerves actually aching.
Anguish causes dark circles.
From pure exhaustion, from deep sadness and heaviness of the truth.
Inside of all of us lies sadness. 
 Uncertainty.  Humiliation.  Devastation.  Anger. 
But all of those stand high above the pit that is anguish.  All of those emotions can be coped with, walked through, bounced back from.  I know because I've experienced every one of them, as have we all. 

But truly, and gratefully, anguish is a rare emotion. 
It is this guttural, palpable, etched so deep inside, unmistakable, relentless emotion that is unlike any other. 
It causes the fog. 
The bleeding fingernails.
The dark circles.
The constant churning inside of your gut that may never go away.
It's a sort of torment for your soul. 
Agony.  Distress.
You see, anguish is exactly the opposite of that which we all hope to feel day to day; comfort, pleasure and joy. 
Often times my own mother has explained to me that when I am in pain, she is in pain.  When I have made bad choices for my life, she has felt them deep inside of her.  When I was physically hurting and away from her, she 'knew it' without knowing of it.  And here I am, thirty years old with a very sick baby of my own and I finally understand that. 
My Mabel cannot speak to me.  She cannot explain the extent of her pain, her torment, her physical anguish.  She cannot tell me what it feels like to lose her vision, be unable to swallow, not poop on her own, have her muscles tighten for hours at a time, have her brain seize almost constantly, or what it feels like to have that same brain be actively shrinking as it continually, like a computer, shuts down piece after piece of her little body.  She cannot tell me with words. 
But I watch her scream and her body arch.  I hold her as she stiffens to the point where I almost cannot.  I drain her belly as it cannot hold as much food and causes her intense discomfort. 
And I know the anguish.
And for her, I feel it.
And for me, I feel it.
I feel so sorry for her. 
I feel so sorry for me.
And together we are so exhausted.
Yesterday was 10 hours of screaming. 
Anguish that stairsteps down from one child to her mother, from that child to her mother. 
We are all together and depending on one another but it's incredibly sad. 
It's incredibly hard.
As I captioned a photo a few days back, "Question and re-question every decision.  Think and re-think every symptom.  Pray and pray more.  Breathe and eat.  Take a run.  Drink coffee.  Hot bath.  Reach for his hand, steal a hug.  Cry.  Laugh.  Repeat."
I forgot: sleep. 
Though I am trying.  And she is more. 
We are in it and in it together. 
Dark circles, churning guts, bloody fingernails, anguish and all. 
One day at a time, as always. 

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