The Streak

Living with Epilepsy, Counting the Seconds

For seven years, I thought of life in seconds. The sixty it would take to get to a minute, the 3,600 in a long hour. The relentlessness of their racing, the number of giant horrible things that could happen in just a tiny few of them.

How many seconds was my youngest’s last seizure?

How many seconds could he go before another struck?

Every other measure of time or a day lost meaning. I didn’t need clocks, just a stop watch. I knew everyone around me still had lunch times and bed times and AMs and PMs and weekends and vacations, but I didn’t think about life like that any more. I just heard ticking.

I still kept a calendar to manage the frenzy of our other kids’ activities, intentionally chaotic to distract from the disorder at home. But time was flat, with no governance or guard rails or breaks. An endless stretch, a terrible kind of infinity.

By the time my son was 236 million seconds old, he’d seized some meaningful percentage of that accrual, suffering a capital punishment over and over again, as if he’d been born strapped in an electric chair. And what was he even guilty of? I mean, sure — he’d stolen a bunch of my sleep, but I wasn’t even interested in pressing charges. He was just a baby, that was a lower case crime, and there was no need to be petty.

The repetitive electrocutions of his sentence robbed him of much of what he’d ever gained. All the quick babble that had turned into flowing and adorable toddler sentences receded, like a tide going out and never coming back in. The beach getting bigger and bigger. Rough little words like so many pebbles that used to toss excitedly in the churn left drying up on the sand.

The running and jumping and whiffle-ball hitting also got sucked out to sea. He still tried to play, but as often as not, his body was unamused. The couch became his life raft.

Epilepsy was consuming him. We forced all kinds of medicines into him to curb this disorder’s voracious appetite. But they barely worked. Or maybe they were working, and what we considered extremely bad was not the worst. Medicine can be this way, protecting you from whatever malady’s true extent, but when not a perfect solution, always leaving you wondering. Is this stuff doing anything?

So many seconds for second-guessing. And all the while, a disappearing act that wouldn’t disappear.

I remember the day I knew we were in for it.

It wasn’t the day of my youngest’s biggest medical emergency when, at nine months, he was airlifted, and intubated, and comatose.

It wasn’t any of the other days like it, of blaring ambulance rides and numbing hospital stays — so many that they’d grow beyond cataloguing, the details blurring, the level of my fear about any one emergency just cortisol watermarks stained on my internal organs. I’d lose track of which flood was which, what insurance covered and what it didn’t.

It wasn’t even the day the neurologist told us our son had a kind of intractable epilepsy that would not resolve with age or good thoughts.

The day I knew life wasn’t going to right itself was a regular enough kind of day, early in my son’s seizure career.

My two oldest were at school, nervously picking their ways through elementary days because, yet again, the day had started weirdly; yet again, they’d woken to the extraordinarily loving neighbor making them breakfast because, yet again, their parents had disappeared in the night to help their little brother.

My younger daughter was three and change, the age at which she went to preschool for approx. 37 minutes of three days per week. Today was an off day, so she was home with me, making herself busy with the topography of toys scattered in our family room. The carpet a make-believe land all her own, where baby brothers were always safe and parents still smiled.

My youngest slept deceptively peacefully in his infant seat, as if he was just a baby taking a lengthy morning nap while his toddler sister buzzed around him. As if he wasn’t sedated from any number of things the ER doctors had just delivered via needles and tubes stuck offensively into his squishy baby arms. So many medicinal pleas begging his system to calm down.

Nestled there in his seat, he could fool you. He looked just fine. He looked perfect. Wait — did his eyes just flutter? That’s normal. Relax! Probably just part of a little baby dream. Just the early days of all the millions of dreams he’ll ever have for himself because this is just the beginning.

Sitting there, we could fool you. The three of us looked cast in some sweet little mid-morning suburban scene.

If you looked, you could see children’s artwork hanging on the fridge: the blobby brushstrokes of a preschooler, the early cave drawings of a 2nd grader, the careful precision of a 5th grader who now knew that faces should have eyebrows, eyes lashes, heads ears.

If you listened, you could hear the dryer humming upstairs, tumbling onesies and small clothes falling all over each other to be worn again.

If you felt like cleaning up, you could scrape into a container the rest of the grapes the conscientious mother had been cutting into halves so none of her kids would die today.

If you asked her, that mom might admit that the person it was getting harder and harder to fool was herself. No matter how all of this looked. How sitting there on the couch, staring at her fourth baby, she could less and less square his blonde sweetness, his round rightness with the mounting evidence of his body.

How she now spent every second waiting for something to happen. Whether it did or not was immaterial. Her growing belief, substantiated by the baby in that seat, was that catastrophe would strike, a warped confirmation bias.

How only fools think life has some innate desire to always veer normal.

With epilepsy, you’re only as good as your yesterday, your hour ago, your previous second. It’s a very what-have-I-done-to-you-lately kind of master.

I’m embarrassed to say I spent years thinking this set up was unique to epilepsy, a myopia of personal hardship.

But so much of life — most, really — is in fact this way. Addiction, mental health, physical health, remissions, resolutions. There is no grand finish line, other than when you are truly finished.

Surely there are accomplishments to celebrate, big goals met, healthy stretches.

But then there is tomorrow to face and figure out.

It’s that one day at a time living — often the only way to pick your way through — which can make you mindful; and also make you go out of your mind.

Even when, aided by syringes of miraculous drops, those singular days start to improve.

Living under siege makes you distrust peaceful times. After a while, everything sounds like a heavy artillery tank rumbling towards you. It doesn’t matter that sometimes the approaching vehicle is actually an ice cream truck. You don’t fall for those music box notes on the breeze. You take cover.

Because while it could be a bomb pop, it could also be a bomb: POP!

This is why, as seconds piled up in October 2017, and none of them contained seizures, our family couldn’t believe it. We wouldn’t believe it. That sing-song sound rolling down the street, beckoning, but no one dared to gather stray change and run outside.

Until.

The truck just kept coming. Down our street. Every day. Without fail. Playing its happy music. Cheerful, convincing us that life could be this way, that things could be delicious.

We lined up. We tried everything.

We started to count on the truck. What else could it bring? Restful nights, a burst of words, a kid who could read everything on the menu and order his own cone. Untold sweetness.

Uneventful seconds ticked on by, but we couldn’t even hear them. Hours came and went. That kid was always talking, telling knocks knocks, laughing.

31 million seconds passed. Nothing happened. Everything happened. We made October 3rd, the anniversary of the last seizure, a small time holiday. The choice of date was maybe a little weird — like marking sobriety with the date of a final bender — but we went with it, making it the industry of our cottage. We had a cake. We talked about the stupendousness of the turnaround. We gave thanks for the medicine that allowed this extreme exception to severe epilepsy’s rule.

And we celebrated the streak. The unbroken stretch of this good life. This run for the record book. We were an undefeated team for seasons on end, each victory more crazy and rare, the stakes of every game higher and higher.

Meanwhile, one small question hanging overhead like a banner at the victory party: How long can such a good run possibly last?

Because you know: there are just so many seconds.

A few days ago, we celebrated our sixth October 3rd.

Another beautiful year of growth and stability, but with an asterisk.

Because here’s the truth: my son did have a seizure this past year. His unblemished record, the thing we’d been celebrating for five years running, marred by a detonating case of Flu A last December.

It was going around, he’d been a little sniffly. But the world was sniffly, riddled with cases of Covid and not Covid, the new standards of endemic living.

He was at school and his teacher texted me to say he did not look well which felt very 1800’s to me, as if he might just need to spend some months by the sea.

I raced to pick him up and found him extremely unwell, barely able to walk to the car, shivering, a convulsive precursor. I got him home and knew what was coming. I tried to persuade him to health by putting on Finding Nemo and talking sing-song to him about how silly Dory was for being such a forget-so.

But I couldn’t talk his body out of its plan.

He spiked a 104 fever and just as I called his neurologist to ask if we should head to the ER, my son seized for the first time in over 157 million seconds. I dropped the phone but his neurologist listened and timed it.

Tickticktickticktickticktickticktick.

The stopwatch clicked on. And I time-traveled.

Back to the ER. Back to tubes and beeping machines. Back. The only difference was now my son filled the hospital bed that used to overwhelm him.

The stay to his sentence ended and with it came a crushing feeling that we were headed back to jail.

“This is not the start to something terrible,” his neurologist, knowing me well, told me.

I wanted to believe him, but I also knew that time and its jury of seconds would have the final say in this case. We would have to wait and live and see.

A few weeks later, after a discharge, after a recovery, I was telling a friend about the whole thing.

“You must be relieved,” she said.

She didn’t mean that my son was better — which, of course, was fully relieving. She meant that he’d had a seizure and had come through it. That the streak was broken, but he wasn’t.

She was right. There’d been something weighty about the streak. Not that I’d wanted my son’s run of stability interrupted. But I’d been scared about how and when the end of the streak would strike.

Because streaks are maybe best left to sports teams and kids of a certain age on snapchat.

Because streaks are, at best…streaky.

What if you lived right in every one of those seconds your family used to count?

What happens when you micro-dose your life?

My son and I have a six minute drive to his middle school. We are rarely rushing, and he is late every day. He needs a certain amount of sleep every night, and once he’s had that, he rolls over, dramatically fake yawns, and greets me over the monitor in his room that’s always on.

“Good morning, Mommy!” Followed by a question or topic for the day: Is it Tuesday? Is it Fall? Is it almost Halloween? Is it my day off?

And then: “Whewwwww, I need a nap today.” He will not end up napping, but who doesn’t feel like this when first confronting getting out of bed in the morning.

He comes downstairs with an offering to hand me, something he’s deemed important from his room — a water cup, his portable speaker, a particular book, a penny he’s found, a feather from the collection he keeps under his bed that makes it look like a synthetic bird met an untimely end right below his box spring.

I squirt two syringes and one tablespoon into his willing mouth. He used to fight meds, back when they made a negligible difference. Now he complies, swallows quickly as if he understands that these particular chemical compounds cause the reactions a good life requires. Keep the ice cream truck coming.

He eats a waffle and drinks milk extremely leisurely. He tells me knock-knock jokes. Or about one of his shows.

I tell him to take another bite, but he doesn’t want to hear it from me; he wants to hear it from Cookie Monster.

Fine: me want you to eat that yummy waffle or me will eat it!!

While he eats, I pack his backpack with small miracles: a lunchbox, the contents of which he will eat 100% and won’t even choke; a PE uniform in which he’ll run as much as he wants, getting overheated and worst case…sweating; a binder containing three pages of completed homework about syllables and calculator math, his name written independently on each sheet.

When he’s finally ready to go, we walk down the back steps from our kitchen to the car, and I might not even hold his hand. He might even jump down the steps like Catboy from PJ Masks. This copycatting used to make me nervous, since animated guys, made of zeros and ones, can do all sorts of risky things that guys made of bones can’t.

But now his feet are sure. He lands like a super hero.

He climbs into the backseat and buckles his own seatbelt. He could probably ride beside me in the front — I mean we’re the same size, so if it’s safe for me, it’s presumably safe for him. And yet — I can’t quite upgrade him. He’s still my baby, he still has that breakable past, a fragile shadow I can’t fully detach from him no matter how bright and directly the sun shines over his head.

He requests a song from Sesame Street and depending on my capacity for those sounds at that hour, I play it. Or not. Some days my phone can’t find that song. But this is only mildly disappointing because the ride through the windy streets of our neighborhood is pleasant enough.

I look at my son in the rearview every minute or so, a force of habit from my days of seconds, when I was always expecting an internal car accident. He is staring bemusedly out the window.

“What are you thinking about?” I ask him. He’s a teenager now. When his siblings were this age, I often left them to their window-gazing, recognizing some burgeoning divide where I wasn’t entitled to every thought they were having.

But with him, I can’t help myself. Another developed compulsion. Started just to be sure he could answer, a neuro Marco Polo, making sure he was still in there, that I could still locate him, that he wasn’t adrift in some unreachable deep end.

Now the game’s different — lower stakes, more fun, endlessly surprising. He no longer defaults to his ready answer “You.” — which was a pretty smart way to get me to shut up.

“Mommy…” He’s never in a rush to answer a question. There’s always time to personalize. Or take a beat. Do you know how many seconds are in a day? Or six years? Or a life?

Don’t race through them. They’re meant to be enjoyed.

“Yes?”

“I…”

“Yes?”

“I don’t know how to whistle.” He says it like a sad confession.

“Oh, well we can change that! Would you like to?”

“Yes!”

“We can work on it. I can teach you.”

“Really??!!” He’s incredulous, perhaps not previously thinking whistling was an attainable goal or a learned skill for everyone. Perhaps considering it like handedness? You’re born a righty or a lefty, a whistler or a non-whistler?

He gets out of the car happy. And I think if anyone should know how to whistle, it’s him. I text his speech therapist: how do you teach someone to whistle?

There are steps to take — lip strengthening exercises, actual whistles to use for practice. This relatively simple skill might take us a while to gain, but who cares — we have the seconds.

I drop him off and watch him walk up the path to his classroom beside his aide. I drive away and I don’t worry what will happen during all the hours he’ll be away from me. His teacher texts me during the day and I don’t panic at every ping. Messages once about emergencies are now about pleasantries, pictures of him pinching a pinch pot, recruiting for his running club, keyboarding unassisted.

And it strikes me — this is the streak. Not the negative value of the seconds — tracking how many have passed without a seizure, focusing on the unbrokenness of the stretch. But the positive of the seconds — noting the astounding things that now fill them, the questions and the knock knocks and the hopes and the goals.

The wanting to whistle.

The stretch itself.

The life that’s packed in between each October 3rd, blemishes — because life wouldn’t have it any other way — and all.

Not counting on a record.

Just counting on a boy.