When Nothing Adds Up

orwell

This morning, I woke up and realized Micah was born hearing. While this is a conclusion my husband came to months ago, the truth of it settled with me only today as I was packing school lunches and making coffee. All this time, prior to this morning, I had told myself and everyone I knew, a completely different story.

Once in a writing workshop, Lidia Yuknavitch, a writer I truly admire, described memory as “the stories we tell ourselves.” The fascinating thing is, most of the time, these stories aren’t true. They are elaborate fabrications, and sometimes even flat-out lies.

For 11 years, I had been reading off a completely different script, convinced that Micah was born deaf. I had numerous reasons to support my belief, but I was wrong. I told myself the hospital had reported a false positive on his hearing results when he was born. A year later, when the audiologist tested him in a hearing booth and said he could hear, I told myself he was misdiagnosed.

Since 1993, all newborns are screened for hearing. The Newborn Hearing Screening (NBHS) is federally mandated in every state. In her book Made to Hear: Cochlear Implants and Raising Deaf Children, Laura Mauldin gives a detailed account of the process, the equipment used and the rules for technicians. Yesterday, after reading how the NBHS tests are administered, I began to question my narrative. When Micah was born, the fact is, both of his ears detected sound. The fact was undeniable: he was born hearing, but that’s not the way I remembered it.

A number of unfortunate circumstances followed Micah’s birth. Maybe that’s why my memory is fuzzy. His circumcision resulted in a staph infection, high fevers, multiple doses of antibiotics, and numerous ear infections. Google any combination of the words, “staph and hearing loss” or “antibiotics and deafness,” and possibilities are endless. Perhaps his deafness was something we could have prevented? After all, it was our choice to circumcise, which some consider an unnecessary procedure. Maybe it was something that happened over time? We may never know the true cause and maybe it doesn’t matter. The chips fell where they did, and I accepted that.

It would take two years before it was determined that Micah was profoundly deaf, but between the ages of 10 months and 24 months, we knew something was severely hindering his development–the missing chip.

I have journaled since I was in third grade. Sometimes I go back and re-read my journal from Micah’s early years as if I were a detective, trying to find clues we may have missed. Back then, I was exhausted with a toddler and a newborn. My husband David worked long hours as a behavior analyst with people who had autism and other developmental disabilities. At around 10 months, he began suspecting Micah was on the autism spectrum. Although autism is typically not diagnosed until 18 months, behavioral signs can be present as early as six months. David didn’t tell me his fears right away. Instead, he grieved privately by finding ways to escape. When he wasn’t working, he was out fishing on his kayak– avoiding home. He didn’t tell me at first, but one night, he woke up weeping and confessed the secret he had been harboring for months.

In addition to language delays, David had other reasons for suspecting autism. Micah didn’t respond to simple auditory commands. He rocked and moaned. He marched around with his legs straight out and his arms swinging as if he were practicing military drills. He repeated the sound “E, E, E…” a non-stop mantra that felt to me like the endless drippings of water torture. By the time Micah was one, his tantrums were so severe, he crashed his head several times into the hard tile floor and into my face. Early bell’s palsy symptoms had my own head pounding, my jaw, teeth and gums throbbing.

For one year, we operated under the assumption that Micah was autistic. The pain both in my heart and in my face from the bell’s palsy often felt like more than I could handle. At night, I numbed my face with Vicodin, but nothing could take away the fears I had for Micah’s future. In prayer, there were no words to express my grief. Please, was all I could manage to groan between bouts of sobbing. Please.

Mark Twain writes, “Some of the worst things in my life never even happened.” Looking back now, I realize those months of despair, fears, and brokenness were misguided. We had come to the wrong conclusion; Micah’s autism was not the true story. For many families, it is. David continues to work with those families everyday in solidarity with their unique challenges and suffering. And although our story diverted from theirs when we found out Micah was deaf, not autistic, it did not lack its own set of obstacles.

A decade later, when I reread my journals, I see how we came to believe 2+2= 5. Micah wasn’t born deaf or autistic, but I spent countless hours telling myself that both of those stories added up. Countless hours gripped by fear for his future. When parents have children with special needs or who don’t fit the mold, it’s vital not to succumb to the terrorizing narratives of our own making. Fear of the unknown is often far worse than the reality or object of that fear.

Memory or our understanding of the past, informs our present and our future. I’m not bitter or ashamed for getting the story wrong. This was simply part of our journey and led to its own kind of truth. Getting it wrong reminds me of the power of story and the importance of silencing compulsive, fearful thought patters. In his book, Into the Silent Land, Martin Laird writes, “telling ourselves a story about the fear, …increases the momentum of fear. It strengthens fear’s grip.”

Mothers like me are not the only ones to fall prey to false narratives disguised as memory. Whole nations, religious groups, and political parties, rely on “history” to prop up their collective paradigms or spread fear.

Ultimately, it doesn’t matter if Micah was born deaf or born hearing. I don’t question his identity. Rather, more and more, I’ve learned to call into question the accuracy of my own memory. I’ve discovered, I’m often the unreliable narrator of my own life. The older I become, I realize that history too is subject to unreliable narrators.

I imagine this is the warning George Orwell had in mind when he envisioned “a nightmare world in which the Leader, or some ruling clique, controls not only the future but the past” narrative. He writes, “If the Leader says of such and such an event, ‘It never happened’—well, it never happened. If he says that two and two are five—well, two and two are five.” According to Orwell, a world void of objective reality is more frightening than a world of violence.

Well, welcome to our world, George Orwell, where we are inundated by both.

In an era where fake news stories often out perform real news, I wonder how my children will discern fact from fiction.

Perhaps it’s not a coincidence that in a time when truth seems scarce, the popularity of ancient meditation is on the rise. Maybe it’s an attempt slip into silence, to plug our ears from the siren songs. According to The Guardian, who can resist Buzzfeed with its many “cute puppies, cats dressed like Kanye West and goats behaving like chicken?” All this, and breaking news too.

Odysseus stopped the ears of his crew with beeswax while his men rowed past the song of the sirens, and in solidarity with deafness, I pick up a good novel or sit crossed legged on my mat and stop my ears with silence.


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