Tripping
It turns out epilepsy reads my work.
Three days after publishing The Streak, celebrating my worry-free drop-offs and my son’s sunny, fun-filled classroom days, he had a seizure at school.
His second in 189 million seconds.
I was on the phone with a mom of a younger child who has seizures at the time. She is an instagram friend, an artist whose work I’ve bought who in turn reads my work.
We’ve never met in person and this was the first time we’d spoken.
She wanted to talk about seizures. She is doing the early wrangling of epilepsy, figuring out the But Also set of problems that comes packaged with this errant wiring, learning to manage the shock waves that change the pressure, temperature and density of your family’s life.
She also wanted to talk about this child-rearing niche, adjusting to raising a child on a different path. She asked me: how do you feel being the mom of a kid with special needs?
I know this question. I had it. I reflected on it constantly when I was newly stumbling this path with my youngest.
I remember thinking my son’s diagnosis and all it entailed felt like a heavy, itchy, too-mammoth woolly sweater that I wasn’t allowed to take off, no matter how hot it was outside.
In those early years, I tore and pulled at all that scratchy yarn. I couldn’t accept that this was who he was, that this was how he was made.
But then: I got to know him. And medicine graciously allowed him to become more and more himself. My abstract worries stopped overshadowing the actual boy in front of me.
He was and is too bright.
And now someone could just as easily ask me how I feel being the mom of a kid with high arches, or blue eyes or a knack for knock-knocks.
I was explaining all of this, painting this picture for this mom (a painter!) of a happy life with a less-than-happy diagnosis. Hand me your palette. All of those black and blue shades that medicine and genetics are handing you? Scrape them off. Here’s some bright yellow and orange and green and pink and purple and, yes, blue, but a better blue. The truest, like on a cloudless day, when the sky is so perfect, it looks fake.
And, yes, sure, there are concerns. There always will be. Because epilepsy lurks. Your house is always a little haunted. But, you’re an artist; notice this: haunted houses are never drawn as simple tract houses. They’re always gorgeous three-story Victorians with porches and dramatic windows and interesting eaves.
So what if it’s the house that sticks out on the block.
So what if not everyone would want to live there.
So what if lots of people tell you that they themselves could never live there.
I’m telling you this: you can move in and learn to do just about anything. You can learn to live with monsters and ghosts. I mean really — are you even alive if you don’t know how to live with monsters and ghosts?
I was telling her what I wish someone could’ve told me when my youngest was struggling and I was reeling and each day felt like a second-stuffed eternity: that our family’s worst thing might, with heavy medicinal assistance and powerful luck, somehow, become our best.
But, alas, epilepsy is a lot like Fight Club in that it both beats the shit out of you and you do not talk about it. You especially don’t speak of seizure-free streaks because epilepsy has incredibly big ears and could hear you and make you regret you ever opened your dumb mouth and/or laptop.
“He lives such a happy — — ”
And then the name of my son’s teacher flashed on my phone screen. I knew she wasn’t calling to tell me that his pinch pot was turning out exceptionally well today.
I hung up on my instagram friend and raced to the classroom. Like I’ve done and I’ve done and I’ve done. My monotony of emergencies.
I arrived to my son lying on the ground, snug under a blanket, his head on a pillow, looking like a guy on a camping trip under classroom fluorescents instead of stars. He wasn’t asleep as he usually is after the draining electrical trip of a seizure. He was alert, blue eyes recognizing me right as I entered.
“Hi, Mommy. I was cold and I had a forehead fever.” He is, um, not a doctor. So this was debatably correct. But he’s only had two seizures in the six years in which he might actually be able to describe them. So he was telling me something.
We packed up his camp site, walked to the car and went home to the forgiveness of the couch, tasking Pixar with keeping the afternoon animated.
He repeated his medical assessment of the situation over and over again. I tried to listen to what he was telling me, the reading between the lines I’ve honed being his mom; the same thing I apply to almost everyone I talk to because people are rarely telling you what they are telling you. They are usually telling you something else.
But here, maybe he was stating the obvious. Maybe he knew himself best and was getting sick; or maybe he had spiked a fever earlier in the day, some fast, phantom illness, gone as it arrived. Epilepsy creates this dreadful dynamic where you almost hope for sickness to lend a certifiable cause to a given seizure. It is, well, sick.
As we waited to see if epilepsy had a reason this time, we rode shotgun with Lightning McQueen, our trillionth road trip through Radiator Springs, and my mind raced, thinking of all the ways we’d been lax.
Cut his bites smaller.
Hold his hand on the stairs.
Turn the monitor up extra loud.
Marco.
Polo.
Don’t look away for a second.
By evening, after many seconds, it became clear that his time he was not getting sick. The seizure had been just a fluke, no obvious cause: an epilepsy specialty.
We did adjust his daily meds though, recognizing that in the six years since he started the medication that changed his life, he’s gained over seventy pounds and probably needs more drug to cover the more of him.
His good health only feels miraculous. It is not sorcery. It is chemistry.
I reached out to my two oldest on the east coast, to report in on the seconds we’d had to count. As the subject of my report excitedly called a race on his Mario Kart track in the next room, sounding exceedingly fine, I highlighted the good parts: it hadn’t been a violent seizure, he wasn’t sick, and it made sense that he needed more medication.
And also:
This is who he is.
He is made this way.
The very thing that used to scare me now my meditation, our comfort.
This is who he is.
He is made this way.
I should’ve known.
The day after I’d declared I couldn’t let my son and that fragile shadow of his ride shotgun in my car, he hopped into the front seat as we were leaving for school. As if he also reads my work.
He climbed into the front from the back, his gangly legs bonking the dash, awkwardly delivering himself to this next big kid stage of life. He buckled his seatbelt as if this was all safety required, and looked at me nervously, expectantly.
Now, he and I both know his mother — she’s unpredictable! She’s nuts! A woman of flimsy reasons governed by moods!
So she might send him to right back to the backseat. Or she might just let him ride.
On that day, she let him ride.
Quickly, there were drawbacks. He started pressing the cell numbers of his siblings on the screen, trying to record audio messages to text. But, like all of humanity, he and Siri have communication issues, and the collab never resulted in a sendable message.
He also found his Sesame Street album readily, belying the difficulties I’d previously claimed.
“It’s right here, Mommy!” he smiled, as if this breakthrough would delight us equally.
“Oh. Funny.” I said in the way you say it when it’s not funny at all, knowing All Too Well my days of musical freedom were over.
After a few minutes, the dashboard novelty faded. You can only push so many buttons — of the car, of your mother. Besides, so many of them don’t do a thing! Or at least not anything satisfying or obvious from within the confines of the cabin.
As I clicked off the hazards, canceling the danger my son had just signaled, I realized he was now taking in his expanded view. I tried to look at it like he was — experiencing this fish bowl effect for the first time. The barrier of the headrest removed. The road ribboning out in front of us, such access to the world, such ability to see what’s ahead, to know where you’re going.
Bert and Ernie singing us their original, before the Carpenters, recognizing that adults needed this message as much if not more than kids, covered it and sent it to #3 on the Billboard 100.
Sing of good things, not bad.
Sing of happy, not sad.
Sing, sing a song.
Make it simple to last your whole life long.
Writing seeks segues.
But then life is always more jagged and sudden and left-fieldish than the page really allows.
Which is to say: now we’re on a road trip.
And not with my new front seat passenger. And not even in that car.
It is only 170,000 seconds and change since my youngest’s last bad 60.
But I had always planned to take my younger daughter to the east coast for her quarter break and then meet my older daughter at my older son’s game in Connecticut.
I felt certain that if I stayed home, nothing would happen. And if I left, something would — a parental corollary, and not even an epilepsy exclusive.
But, driven by a mix of nervous mania, vigil fatigue and an unwillingness to add to epilepsy’s roster of broken promises, I left.
The plan was to tour a school in DC and then drive to CT which, as we all know, is just another state that is also right there on the east coast.
I had mapped the drive during my planning stages and I swear it had clocked at five hours. Not so bad. Like a mediocre ride to Tahoe when there’s no chain control. Easy!
But when we got in the car after our campus tour, I plugged our states-away destination into Waze, and the answer changed.
Actually, at first there was no answer. On the first two attempts, the app thought and thought about it, literally spinning its little wheel, and then gave a message that essentially said THERE IS NO WAY TO DRIVE FROM HERE TO THERE.
I used my only technical skill and closed the app and tried again. Waze kept thinking and thinking, making it clear that even calibrating this route was a lot of work. Finally, the sweaty answer registered: 6:47 driving time. 343 miles.
WHAT??
I grew up on the east coast and always just considered the whole thing very reasonable and drivable.
Why from my Massachusetts childhood home, we could be in New Hampshire in ten minutes, a desirable location because we could both avoid sales tax and buy alcohol on Sundays when the puritanical Massachusetts packies were closed.
So I grew up running quick errands in another state. But now I realize that proximity was only part of my everything’s-close-and-easy perspective; the bigger reason was probably that I grew up the daughter of a guy who just liked to drive.
My dad’s road trip specialty was family overnights to Saratoga NY for horse races.
We would always get gas before leaving town at the local full service station where they would fill your tank and also, depending on the guy on shift, take bets. My dad would go into the convenience store alone, dinging the bells tied to the door as he pushed, and reemerge with a vested interest in the outcome of races on a variety of eastern tracks and two cans of soda for the three of us kids to share. We’ll never know why. Like 2/3 the bathroom stops maybe? But I don’t recall there being any bathroom stops so likely that was not it.
We listened exclusively to a rotation of Dan Fogelberg, James Taylor, the Rolling Stones, Judy Collins and Billy Joel’s The Stranger because my dad had a FIVE CD PLAYER in his car. Technology! What’s more, the car had come equipped with a phone in an age where it seemed inconceivable you’d need to place or receive a call when you were not in your home or your office. The phone, fitted into a box in the center console, presented like the one the president might use to initiate a nuclear attack, and using it cost ~$5k per call, which made it quite like not having a phone in the car.
One time we arrived at Saratoga to learn my dad’s horse was scratched from the big race. We pulled up to the paddock, and while my dad had an animated conversation with the trainer, I searched the horse’s body for this costly injury. But the horse looked totally fine, stately, ready and only mildly annoyed by the one requisite fly orbiting its eyeball.
I’d learn on this trip that scratched meant out of the race. The trainer had not been able to reach my dad before we left the house to let him know the horse wouldn’t be running, that we shouldn’t come. This was the utility of that phone.
We’d driven all this way to see nothing and, if we were going to see nothing, we could do that at home. So we got right back in the car and drove all that way home.
A stop at Howard Johnsons for dinner. Leaving our New York State of Mind behind. My dad authoritatively throwing change into the catch at the toll booth, listening to it clank down, joining its brethren to help maintain these crappy roads. Then the window back up jjjjjjjhhhhhhh because this space was only for the five of us, no other elements.
Mick singing us home, reminding us that, like him, we’d got no satisfaction.
But we’d tried.
Here’s the segue: roadtrips become core memories!
And what’s seven-ish hours between a mother and a daughter??
And what’s life if not a buckle-up proposition?
Once Waze had choked up our DC to CT route, we knew we could drive.
And once I’d consulted the United app for reasonable, last minute flights to CT and discovered there weren’t any, we knew we would drive.
We tried to reframe the miles and miles in front of us, thinking of them in ways that felt manageable. My daughter said it wasn’t that bad, that it was like listening to All Too Well forty times in a row, and we both agreed that we’d possibly done this on other occasions just because.
Also, my daughter had never to DC before, her 8th grade trip a casualty of the pandemic. Now, stuck in traffic, she saw all the sites from the comfort of her passenger seat. The Lincoln Memorial. The Pentagon. The top of the White House. A helicopter chopping overhead probably carrying Biden or Jack Ryan.
Inspired by the lap of democracy ( ~ or some approximation of it ~ ) we put on Hamilton. Ten songs in, I realized the album was on shuffle, the lack of chronology throwing my sing along game way off, my tongue losing a duel with my brain.
So I just listened to my daughter. She still knew every fast word, those lyrics sitting as ready in her head as they sat in 2015, able to serve the moment they were called up. The things young brains can do.
We finished the whole 142 minutes, a pivotal chunk of American History behind us, and only had four hours to go.
At a point, it became clear we were headed for the Chesapeake Bay Bridge. The fact felt stunning, and not just because of my limited geographical knowledge making Maryland a surprise; but also because of the sight of it, rising like terror ahead of us, looming like something an everyday motorist shouldn’t tackle without a lot of notice and emotional preparation.
But you can’t turn around once it’s in your path. Even if you weren’t expecting it. And you can’t stop once you’ve started over.
There’s no choice.
You just have to keep your eyes fixed on the road in front of you.
You just have to ignore that there are bowling alleys with higher gutter guards.
You just have to keep going, no matter how scary and narrow and wrong it all feels.
And then you do it, you navigate it, exiting on the other side, returning to a flat monotony of miles, like you never even drove over that span, all just water under the bridge.
For the next 200 miles you encounter multiple intermittent turnaround signs: RETURN TO THE BAY BRIDGE, an increasingly an odd offer for the road to make.
Who would want to go back?
But of course people join roads at all different points and not every sign is for every person. Driving requires knowing what directions are for you. You can’t follow every way. You’d never get anywhere!
When we were nearly at our destination, my indispensable phone rang in the car. My older daughter, who’d been waiting for us at our hotel in CT for a time frame she aptly described as Forever, was now thinking of leaving to drive another thirty minutes to Massachusetts so she could see her brother at the hotel where his team was staying.
We told her the only thing that made sense at that point in our day: sit tight!
We picked her up, and that is how, many, many states later, I was with both of my daughters hugging my older son in the last hour of his 19th birthday in the lobby of a western Massachusetts La Quinta.
Later, back at our CT hotel, I nervously called home to check in on my youngest. He was too busy for my FaceTime, playing in the background, leaving his nanny to field my questions as if she was his publicist. My client enjoyed the park. My client had a peanut butter sandwich for lunch. My client would prefer not to answer that at this time.
I watched my son lining up his racers, his fingers skillful and practiced, acting on his brain’s precise directives.
“How are you feeling?” I asked, ready to decipher any cryptic report he might issue.
Looking down at the stretch of track in front of him, he answered quickly and without looking up, “Better than great!”
This is who he is.
He is made this way.
And the miles I could’ve missed.
