On Survival (Or To Live Is To Suffer)
On Wednesday morning, I was awakened at 6:15 by a series of swift kicks to the groin and a fist to the eye by the mighty hands and feet of my almost three year old who is now scared to sleep in her own room so she’s bogarted ours. Following the physical assault was an immediate and piercing mix of scream/cry/whine, otherwise known as “toddler wakes up on the wrong fucking side of the bed,” and you question your life choices.
Then she wanted to watch the show about pirates on mommy’s phone. Then she wanted mommy to take her to the potty — NOT DADDY. Then she didn’t want to wash her hands. Then wanted to put the toothpaste on the toothbrush ALL BY HERSELF. At some point, my exasperated husband dragged her kicking and screaming into her room, and I slipped into the shower. So many mother fucking battles to fight before 7 am.
By the time I got out of the shower, she was hardcore three-year-olding out with this little plastic princess whom she’d named “Sleeping Judy” and refusing to put on pants much less socks, shoes and/or a shirt.
None of this was out of the ordinary — this is simply what we call a weekday. However, I was inordinately on edge because we had to get to the audiologist by 8:30, and it tends to stir my belly.
We go to the audiologist every six months for routine hearing tests because my daughter was born with mild to moderate hearing loss. This means something happened genetically that, after months and months and dollars and dollars, no professional was able to explain. It also means it’s permanent. There’s no cure. There’s no medical or magical solution. Fortunately, there is intervention and technology (which isn’t covered by insurance but that’s a whole other story of woe) and tools and resources that level the playing field and make it extremely easy for her to lead a completely normal life. She talks up a storm. In fact, according to her audiologist, her vocabulary is better than most of her 5 year old kiddos. Point is: she’s doing swimmingly well, hearing loss or not.
It wasn’t innately easy for me to glass-half-full this situation. Quite the opposite. Coping and coming to terms with her hearing loss was a long and arduous process. But like most things that are completely out of our control and make us feel woefully powerless, I eventually accepted the hand we were dealt and filed it away in a box labeled “SHITTY BUT MANAGEABLE.”
And it’s totally fine now. Hearing loss is just another thing we do. It’s not a problem. It’s not hard. We don’t think about it. We brush our teeth, eat breakfast, go potty, wear hearing aids during all waking hours, change out the batteries on Mondays, take them out and clean them before bath time. We visit the audiologist every six months for hearing tests. Over the years, her loss has been categorized as “stable” which means it stays within a 5–10 dB margin of error.
But today it wasn’t. The testing took longer than usual, which I assumed was because she’s a little older now and doesn’t fatigue quite as easily which allows the audiologist to do a more thorough job.
When she finished the test, my daughter immediately proclaimed, “I did a great job, Mommy!” She was genuinely proud of herself. It was adorable. Then we followed the audiologist into her office where I expected her to say, “Okay, everything looks good!” and to be on our way. But instead, she sat me down at the table and said, “Okay, so there’s been a slight change in the lower frequencies.” Turns out her loss had dropped by 15 dB in both ears and we would now need to come back in 3 months to monitor her thresholds.
I half-heartedly tried to hold it together but started crying within moments. Iris brought me a bucket of toys. “It’s okay, Mommy. Here’s A LOT of toys.” She was comforting me.
For her, nothing had changed. For me, everything had, which is so fucking stupid because every medical professional with whom we’ve met since the day she was born — AND THERE HAVE BEEN MANY LET ME TELL YOU — have all said the same maddening thing: we have absolutely no idea why this happened and we certainly have no idea what’s going to happen with it in the future. Because no two hearing losses are the same. There’s no formula. No prognosis. No roadmap. Her loss could stay stable, sure. It could also stay stable for ten years and then could suddenly drop. There’s no, “Okay it’s been stable for three years, so we can finally exhale and have a margarita!” It doesn’t work that way. There’s no exhaling in this situation.
Despite this knowledge, I had still filed it away under “STABLE.” And because I put it in that folder, because I fooled myself into thinking the world isn’t chaos, I didn’t expect this routine hearing test to be anything other than routine. I didn’t expect to be in a situation where there was a possibility that my child’s hearing could eventually/someday/maybe deteriorate completely. That’s the trouble with expectations.
I also expected my brother to live until we were old and withered and grey, but instead, he died of a heroin overdose suddenly, tragically, and permanently at thirty years old. And the pain of his death, while far less acute than it initially was, is now the President and CEO of all of my suffering. So whenever I feel any piercing, unrelated heartache, it drops immediately into that space and spreads into something deeper. A seemingly unrelated shitty thing triggers THAT paramount shitty thing and then I’m driving down the freeway listening to Beach House and sobbing until the tears fall into my lap. The sounds coming out of my throat are guttural and familiar. I’ve uttered them so many fucking times over the last few years. It’s exhausting.
And I’m not even complaining. I’m simply trying to make sense AGAIN of the fact that the world is chaos and 100 million bajillion percent out of our control. Friedrich Nietzsche said “to live is to suffer; to survive is to find some meaning in the suffering.”
Lovely sentiment, font-worthy even, but how does one actually do that? How do I find meaning in the death of my brother or my child’s permanent, and now potentially progressive, disability? How do I find meaning in Congress stealing health insurance from 30 million Americans overnight and stripping women of reproductive rights one fetal-burial mandate at a time? How do I find meaning in 6 year olds being gunned down by automatic assault weapons in Kindergarten classrooms or bombs being dropped on innocent civilian homes and lives in Syria? How do I find meaning in the soon to be American Presidency of a racist, sexist, pathological lying, narcissistic, egomaniacal, reality TV star who will soon have his tiny, thin-skinned finger on a button that could literally end all of our lives in an instant?
Long ago, people lived with the very real threat of death by wild animal or incurable pox or harsh terrain. I learned about it playing The Oregon Trail on an old IBM in my fourth grade computer class. The nature of the trail has changed, yet we keep trekking along. We journey through the death of a sibling, a child, a parent, a partner, a spouse; the failed marriage, the crippling debt, the necessary abortion, the paralyzing infertility, the permanent disability, the job you can’t seem to land; the assault, the robbery, the break-in, the accident; the sickness, the anxiety, the depression, the loneliness; the betrayal, the disappointment, and the heartbreak.
Maybe meaning is about acceptance. Maybe it’s about bettering our circumstances for the next generation. Maybe it’s about eating an ice cream cone when you want a goddamn ice cream cone. Or looking at the sky. Or singing a song with your three-year old. Maybe it’s about love.
Or maybe it’s simply knowing that nothing is permanent. Unbridled joy won’t last forever but neither will gut-wrenching suffering. And along the way, maybe we’ll learn some things we never knew, never wanted to know, and our humanity will grow in spite of ourselves.
And we will make the most of it. Because we are here for but a short time. A very short time.
We will survive.