Post Ictal Period: Biding Our Time

It's a beautiful late spring day.  Awesome and I are sitting on our back deck on cushioned, reclining deck chairs. The interplay of shade and sunlight through the moving tree leaves makes a magical ever-changing composition of light and shade on the deck.  All around us, hidden in the trees, we hear the chirping of busy songbirds.  Our two dogs lounge nearby--Belle is stretched out in the sun in front of us; Coco in the shade nearby, where he can watch the backyard through the railing and still be close to us.  The air's warm but not too warm--and pleasantly alive with a light breeze.   It's a gorgeously perfect--even iconic--late spring day, the kind of day we'll remember fondly and wistfully in a few weeks when the furnace blast of summer hits.

Though the setting is amazing, the perfection of the day seems far away.  Our lives don't match the magic of the day.

This beautiful day's promise was stolen early this morning as Awesome lay in bed right after waking.  Suddenly the spark of consciousness drained from her eyes.  Her dad noticed it first.  He said, "Awesome, are you alright?"  Her eyes stared blankly; she didn't answer.

Lying beside her on the bed, I glanced over at her, "Hey, Awesome, you OK?"  And as the words came out of my mouth, Awesome's head turned slowly upward and to the right--and then the convulsive seizure hit.  It was a strong seizure.  But thanks to CBD (aka medical marijuana), the convulsive part was short-lived--less than a minute.  It was followed by a longer focal seizure--a complex partial.  That too was short-lived.  Less than three minutes after the complex partial started, her eyes, which had been sharply deviated to one side, came back to center again and closed, signaling the seizure's end.  Four minutes after it started. the entire seizure was over, and Awesome was safely in her post-ictal (after seizure) sleep.

The seizure was a short one, but it had taken so much with it.  Awesome was like a balloon that had lost its air.   She wilted and was spent.

And so, now, several hours later, after her post-ictal (after seizure) sleep and after having eaten lunch, we've gone outside to sit and relax.  To recover and figure out what happens with the rest of the day.  Rest?  Home school lessons?  It's all up in the air.

Awesome, beside me on the deck lounge chair, is tired and spent.  Her head hurts.  She's alternately grumpy and apologetic.  She moans occasionally, not from pain, but from weariness with the situation.  Her frustration, and even exasperation with this day is palpable.  She's in a state of weary tiredness fraught with restlessness.

 This beautiful day which could have been so full of promise has instead become something to endure and to simply get through.  Today has become like a long hallway--a transitional space in time that we're passing through--to get to the better place called tomorrow.

There's not much I can do for Awesome to make things better, except endure it with her.  I ask her if she'd like a smoothie.  She says she's not hungry. We sit in silence side by side on our lounge chairs, listening to her Spotify playlist on her laptop.  The sadder songs are almost more than we can bear.  We agree to skip and listen only to happier, more upbeat songs.  But this doesn't help.

I'm as restless and impatient with this day as Awesome is.  Part of what makes me restless is the feeling that absolutely nothing is going to get accomplished today. I'm goal oriented.  A doer.  Too long sitting in one place accomplishing nothing drives me crazy. Rest is what you do only when you're forced to do it.  Today almost certainly looks like it's going to be a day of enforced rest.   Which is, for me a little like torture.  I've never been good at resting.  Even in Kindergarten I got N's--"needs improvement" on my report card under "rests at rest time."   Never mind, napping.  Napping is simply not in my skills set.  Awesome is my daughter in that regard.  She hates naps.   She considers naps a waste of time.  There is too much life being missed with naps.

It's a measure of its domination that epilepsy forces post-ictal naps out of Awesome and makes her feel, even after her post-ictal sleep, like she needs to nap. And it's equally a measure of my Awesome's determined spirit that she refuses--no matter how spent she is--to give in to epilepsy and take another nap once she's regained consciousness.  She fights another nap with every ounce of her being.  And thus she's tired and miserable...  I not only respect her for this determination--I understand it.  We are two peas in a pod in that regard.

Seizures exhaust both the brain and the body.  How deep and broad that exhaustion is, varies from seizure to seizure.  Today's seizure was short, but it was also strong.  Awesome may not have had any impairments as a result of this seizure, but it did exhaust her.

The question with every big seizure day that falls on a weekday morning is whether or not to push ahead with home school.

Is Awesome up to doing schoolwork?

The answer before CBD was almost always no.  Since CBD, it varies, but is mostly yes.

But Awesome looks to be in worse shape today than usual lately.  While she had no post-ictal impairments with this seizure, it seems to have really taken it out of her physically.  She's struggling with fatigue.  But on the other hand she's also bored and restless.  Having something like schoolwork to concentrate on might just energize her.  I don't want to give up a school day unless it's really necessary.  And so I debate what to do.   I consider broaching the subject of schoolwork with Awesome.  But watching her I ultimately decide that it would be unkind to do so.  It would be unreasonable to expect her to do a math lesson right now. It would even be kind of mean.  And I'm not a mean mom.

And so, I don't mention schoolwork.  We are ahead in our lessons--a bit of a miracle, in fact, given the kind of year it's been medically.  And so I think about what else I could give Awesome to occupy herself that isn't a screen and that doesn't require energy.  I suggest a puzzle.  She groans and shifts on her chair.  Ever since we've been out here in our chairs on the deck, Awesome's been up and down, constantly changing positions, sighing, moaning.  It's painful to watch your child in a state like this.  She reluctantly agrees to a puzzle.  And it does help organize her mind to do a structured activity.  But the signs of restless fatigue are still there.

Awesome and I both hate this day.  We both don't want to rest.  We both wish today were over and that it was tomorrow.  We are two restless bodies, minds, and souls restlessly resisting resting but resting nonetheless, however badly we're managing it.

Epilepsy requires patience.  An ability to surrender your plans, your body, your mind, and your will time after time to something that you can't predict, can't control, and can't escape--something that leaves you feeling ambushed, exhausted, bested, and ultimately helpless and traumatized.  Some days you simply don't feel like surrendering.  You want to be a part of the resistance.  But epilepsy takes no prisoners; it makes no compromises.  Epilepsy doesn't play nice.    It rolls over people like the tanks rolled over the protesters in Tiananmen Square.

It's amazing how little time seizures actually take, but how much damage they can do to a day, a week, or a life.  4 short minutes have changed the whole day, negatively impacting the other 896 waking minutes of the day.  Put another way, 0.06% of the time in the day has effectively managed to negatively impact and even ruin the other 99.94% of Awesome's day.  And mine too.  It has taken a day of promise and turned it into a day of rest.  Blech.

As we sit on the deck together, the real world filled with birdsong, sunshine, blue skies, the promise of spring, and people going about their daily business, seems distant and far away.  We can see it all, but we can't seem to touch it, claim it, or consistently live in it.  It seems more like the backdrop of a movie than the world we live in.

Awesome completes a small puzzle.  And leans back on her chair again.  I give up and give her what I know she really wants and needs to really relax and recover--her screen.  Her laptop.  She wants to lose herself in her favorite cartoons.  For her it's a way of simply taking a break from existence for awhile.  A way of forgetting she exists.  Forgetting her troubles.  It's how she relaxes.  It's how she copes.  She needs this escape right now.  It helps her calm and center herself.  And rest.  And we both know--however unhappy we are about it--that she needs rest.

I ask her again if she'd like a smoothie and she says sure.  She would.  And a blanket?  Yes, please.  Ten minutes later, smoothie in hand, snuggled in her blanket, with an episode of "The Amazing World of Gumball" playing, she's almost OK.  The restlessness, the disappointment, the sadness, the frustration, the exasperation....of dealing with seizures is gone.  At least for the moment.

I lie back on my own chair beside her, with my own smoothie in hand, trying not to feel like the real world is as far away as it is.  I tell myself that this is epilepsy.  It's not only hyper-vigilance 24/7, but also being forced to surrender.  Being forced to practice the difficult skill of learning to let go of your plans, your goals, and the promise of the day....and simply being forced to rest.  Whether or not you want to.  Whether or not you're good at it.  Whether or not it drives you crazy.  No matter how far away it makes you feel you are from the real world.

Awesome laughs out loud at one of her cartoons.  She looks up at me and says, "I love you, Mommy.  Are you OK?"  I answer in the affirmative and tell her I love her too.  I repeat the same question to her.  She says, "Yeah, I'm OK."

"Does your head hurt?"

"Only if I move it."  She goes back to her cartoon.

I lean back on my cushioned deck chair, close my eyes, and try my best to rest.  And to be patient with not accomplishing anything today.  And making it enough to be living in the goodness of the moment.  The iconic spring day.  The birdsong.  The gentle breeze.  The warmth of the sun on my skin.  The cool of the shade.  The loyal dogs sleeping beside us.  My amazing daughter whom I love more than life itself.  The good taste of the smoothie.  The beautiful blue sky.  The green of the trees.  And yes, too, the promise of tomorrow.