Intelligent Design

“Nana just finger-fucked the lasagna I was making for dinner tonight.”         

I could never have predicted hearing these words as soon as I pressed the Accept button. It was my younger sister, Ronnie. I held back laughter, which wasn’t easy when she followed up with, “and she stole my fucking sandwich!”

My sister was referring to our 94-year-old grandmother, who she took in a few years ago. Our older sister had just lost her house to foreclosure, then moved in with the blind mechanic next door. She had been sleeping with him for a few weeks before her live-in boyfriend found out and bailed on her, taking her cashed-out 401K with him, but kindly leaving all of their joint debt, including a mortgage she couldn’t afford alone. They had purchased the house together with the noble intention of providing a home for Nana, who had just lost her own house not just when but because our father died.

Wait, it gets better.

Turned out our father had coerced Nana into signing everything over to him a few years earlier, never thinking that she would outlive him. He, his wife, and her crooked lawyer brother-in-law had convinced Nana that the woman she crashed her car into after fainting behind the wheel was going to “sue her for everything she had.”

Really, no one, thought Nana would be alive this long, including Nana. I am not exaggerating when I say she’s been saying she wants to die since 1987 when our grandfather passed away.  But she is still here, losing touch with reality every day. The past few months, dementia has been lurking like a stalker, an omnipresence Ronnie says is going to push her right over the edge along with Nana.

I didn’t say anything in response to the lasagna-fucking comment. The imagery conjured up a lot of saucy visuals that branched from finger-fucking to full-on fucking a pan of cheesy goodness. Not that I’ve never wanted to fuck my food, but generally I am not attracted to Italian cuisine.  Too messy (although the table-bread has often been as good as any foreplay).

I say without self-pity that my siblings and I were victims of poverty and abuse as children.  It is with the same lack of self-pity that I no longer blame my father for the things he did. I have come to understand that sadness and anger are frighteningly similar, or similarly frightening.  One can become the other faster than dinner plans can change or hair can detach from a scalp. There are even times when the two emotions are one in the same.

Rather than running for the make-believe convenience store we created in the woods or whispering across the darkness of the bedroom all four of us shared, a tiny wallpapered space in a 1200 square foot ranch, my siblings and I now have lengthy, often one-sided phone conversations or rapid-fire bursts of text messages when something is wrong. Few people know how to comfort the way a sibling does. They know the difference between listening and waiting for their turn to talk. Some topics simply trump others, and sisters know the hierarchy, though the rules have never been formally established. A missing child, an annoying boss, a fight with a husband, these take priority over unexplained weight gain, constipation (or the reverse), any of our children’s sporting events or willful acts of disobedience. Today a missing sandwich and a contaminated lasagna have taken center stage. What can compete with that? I guess it’s a good day when I can ask.

            “Hold on. She’s in the bathroom! I’m going to go see if my sandwich is in her drawer,” Ronnie said.  I imagine dementia is not unlike being drunk, that loss of inhibition, a time when there is nothing to hold you back from being the person you are deep down, the very self you have spent your life trying to conceal. For Nana, this person is a stealthy, starving saboteur who snatches food not because she wants to eat it (or fuck it), but because she might want to later. Nana has spent a lifetime in a state of deprivation, first by necessity due to a Depression-era upbringing, and later due to in a self-imposed hunger that kept her below a hundred pounds. As children we always thought Nana had a “bad stomach,” that her fainting spells and effortless vomiting were related to “that damn ulcer.” We knew where the smelling salts were before any of our ages reached the double digits. We knew she wasn’t dead, she just looked like it, and if we held the vial under her nose, she would come back to life. We also came to expect her to make several trips to the bathroom during our frequent meals at smorgasbords and all-you-care-to-eat buffets. She could quickly and mostly discretely bend over beside the car to get rid of the last bit of the offending substance before the short drive home. This scene was as familiar to us as the plastic baggies of buffet-booty stashed in her purse, just in case a sudden urge for steamed broccoli or chicken wings struck.  Starved test-mice will spend the rest of their lives overeating whenever they are presented with food, just as women with eating disorders will tell you their lives revolve around food, not only eating it, but thinking about eating it, trying not to eat it, wishing they hadn’t eaten it, waiting to eat it again.

            “Ah-ha! I found my fucking sandwich AND my brand-new box of Zantac! I knew she stole it!” Ronnie announced proudly. “And she’s whistling again, but of course when I tell her she’s doing it, she denies it. I gotta go! She’s coming. I’ll call you back.”

            “It really hurts when you cannot stand someone you love,” I offered.

“Oh my god, you’re right. I know you know. I’m sorry. I love you,” Ronnie said just before she hung up.

            “IT’S OKAY IT’S OKAY IT’S OKAY!”  The intense, desperate plea from the back seat sucked the oxygen out of my Jeep within seconds.

Thomas. My son. Twelve. Autistic. The need to scream “it’s okay” is his latest in a string of rapidly developing compulsions. Ironically, things had never been less okay.

I reached back to grope for his leg in an attempt to comfort him. “It’s okay,” I scripted. This was my half of the ritual. I said it even though I knew this response was not a sustainable solution, and I admit my attempt to ease his anxiety was half-hearted at best but it is hard to accept that comforting your child when he’s in crisis is not the correct thing to do, to believe a counselor when she tells you that the most fundamentally instinctual response a mother has for her child can actually make things worse.

Lately, I am already worn down in the first ten minutes of our hour-long commute to and from school. By the time we reached the turnpike, I was already sick of saying “it’s okay.” Sometimes, I was sick of saying it before we have even left the parking lot of Thomas’s school, a facility for special needs students, where he was placed three years ago. Three years ago. A blink. A lifetime. His twelfth birthday was only a few months ago, his birth only moments before.

My memories of this era will be marked by two things: my diminishing faith in God and the repetition of the phrase “it’s okay,” two words that have infinitely merged together in my mind as one, a phrase spoken through tightly clenched teeth. “It’s okay,” one of us always seemed to be saying. If it was Thomas, the phrase would be accompanied by his left hand rapidly scratching at his chest while his right hand extended forward like an offering, thumb and index finger working in unison to some end I have never determined. A snap? A flicking of the joint? Does it matter?

The worse the habit got, the more I prayed. But the harder I searched for God, the less I could find him. He wasn’t a sandwich buried in a drawer full of rotten food in an old lady’s bedroom, nothing I would later find and triumphantly announce “I knew it!” He certainly wasn’t anywhere I had been looking for the last three years in a futile attempt to help (the word cure has not been spoken in our house in many, many years) my autistic son to navigate his world, or at to at least exist comfortably in ours. God wasn’t in any of the gluten-free potato chip bags that lined our pantry shelves in lieu of real food. He wasn’t in the Ativan or the Valium, no matter how large or small the dose. He wasn’t in the Amantadine or the Wellbutrin, or any of the other laundry list of pharmaceuticals we have spent years trialing, each one requiring months to reach a therapeutic dose, and once failure was determined, at least that many more months to wean off and start the  process again with a new med. There is no God in that. Nor was God in the CBT used by the MT to treat the OCD. I could not feel his presence at all except in the constricting, claustrophobic moments when I felt certain he was kidney-punching me as I lay in the fetal position on the floor of whatever room I had collapsed in with complete hopelessness, a feeling too heavy to bear in an upright position.

“It’s okay,” my older son, Nate said one of these times when he found me crumpled on my bedroom floor in front of the hamper. (This marks the only time this phrase did not feel contaminated with falsehood). I kept repeating, “it hurts so much,” as if against my own will.

God did not answer or come to my rescue in that moment or in the days that followed, each one worse than the one before, though they are now, only a couple months later, all merged into a blur of frustration and pain.

God. Said often enough, the word begins to lose meaning, to break down, to morph into something else. Maybe if I scream it over and over someone will respond, even if half-heartedly.

  The bird-like sounds blaring through the aisles of the grocery store in those monumentally painful days could just as easily have been God laughing at me as they were Thomas, stuck in the autistic hell of repeat, rooted in place between the Pop-Tarts and the granola, shoulders slumped forward, too afraid to move ahead, too afraid to turn back.

Maybe God’s absence was for the best when I acquired the newfound ability to see Thomas the way others must see him. I would flush with embarrassment and he jumped up and down making unintelligible noises at the top of his lungs. Then I would become so ashamed of myself I would start to cry. When he was small, a little blue-eyed bundle of energy, people still smiled when they walked passed us, Thomas exploring everything at warp speed, squealing and running through the grocery store. No one finds it endearing when a five-foot-three boy with a budding mustache does it. Or when he takes his mother down by the hair in the potato chip aisle. I hate myself for it, but the bigger Thomas gets, the less I am able to find the beauty in autism. I no longer want to understand why he does these things. I don’t care. I just want them to stop. 

There are things I am not grateful for in the present, but I know from experience I will be in the future, when things get worse. This is the one thing I can be sure of—a fate that is not dependent on any god—things will always get worse. I should have been grateful that we were still able to ride in the car at all given how many times Thomas unbuckled his seat belt to claw at my face or pull my hair when I didn’t say “it’s okay” quickly or correctly, or when I did, only to find that OCD had hijacked the correct response, changed things without telling me. I should have been grateful that we could still go places at all, though we did so with me holding onto Thomas’s hand and dragging him through a store. I nearly forgot what it felt like when he walked along happily beside me, singing to himself. When he smiled. When I was certain God would step in and give us a cure. But I was starving for a crumb of voluntary affection or a sliver of a sign of his happiness. We were in our own emotional Great Depression, a time where a bit of love would have been enough to sustain a starving mother for days. I would have happily credited God for one kiss I didn’t have to ask for, for a hand coming from the back seat to touch my shoulder with something other than fury, for a glance at my son when I could like what I saw.

What I had said to my sister on the phone was the closest I came to admitting to anyone that there were times when I couldn’t stand my own son. I wanted more than anything to like the person I loved.

A week after my comment to my sister, “it’s okay” was gone. It just vanished, replaced by a guttural scream so forceful that Thomas damaged his vocal cords. For this one, the desired response for me to yell, though I was never clear on what it was I was supposed to say. “Mommy yell it,” Thomas would plead, something I must have done often enough that it formed a path in his brain that lead from panic to comfort, however brief, often enough that that same level of emotion was required in order to stop the compulsion.

Later on Lasagna-fucking day, Ronnie texted a report on what else she had found in Nana’s dresser drawer. No more cold cuts, but she did find a missing bag of Boom Chicka Pop (caramel and cheddar—worth searching for), and a half stick of butter. The cat’s food remains a mystery.  I praised her for putting up with Nana. Taking her in had been selfless, but maybe the time has come to find a nursing home. Or maybe I am projecting because the daily task of caring for the person who is driving me insane cannot be given over to someone else, cannot be given over to anyone else.

Surely there is intention in God’s design, an emotional insurance policy He gives us for when the people we love the most and those we cannot stand become one in the same. Maybe it is in the design. Maybe He makes them make themselves hate-able. So that by the time we have to put them in a nursing home or residential treatment facility, in a psych hospital or in the ground, we no longer feel so bad about it.