Gambling with Alice: A Triumph in Three Parts (in spite of epilepsy)

Will you, won't you, will you, won't you,
Will you join the dance?
Will you, won't you, will you, won't you,
Won't you join the dance?

It's the end of school year.  A time for recitals, performances, and events.  Tonight is dress rehearsal for Awesome's Theater Group.  Tomorrow they'll give two performances of a play based on "Alice in Wonderland."  Awesome will play several parts: Alice's older sister Margaret, the Mock Turtle, and the Postman.  She'll also act as a table, form part of the Jabberwocky's tail, and perform a myriad of other bit parts.   She and her classmates have been learning their lines since the first of the year.  Learning where to stand, what to do, how to do it, and how to do it better.  Awesome's excited.  And as her parents, so are we.

But as epilepsy parents there's an extra edge of worry in our excitement.

As the parent of a child with epilepsy I can't help but imagine all the ways that things could go wrong.  

Scenario I:  Two hundred people are staring at Awesome as her eyes flutter upward, her speech arrests, and she loses conscious awareness for several seconds.  Subsequently the whole play is precipitously balanced on a moment in time that depends for its save on a child who--for several seconds--is unaware that she and the world exist.  It's like balancing the world on an inverted pyramid that can't hold the weight assigned it.  Wait for it.... Wait for it...  Wait for it...  Blink, blink...and then she's back.  People wonder, "What was that ?"

Scenario II:  Awesome has a major convulsive seizure sometime before we actually arrive at the theater, at the theater before the play starts, or backstage during the play.  She's unable to perform.  The teacher scrambles to fill the parts Awesome would have played.  The show must go on.  But--after months of practice and anticipation--it goes on without Awesome.   And while the play is saved, Awesome is devastated.

Scenario III:   Worst of all.   Awesome has a major convulsive seizure on stage in front of her peers and the audience, disrupting the entire play for all.  As parents we run on stage, scrambling to remove her from view as quickly as possible so that the show can go on.  But the magic is gone and there are now 200 traumatized people. (Seizures are traumatic events in our society.)  We feel lots of guilt.  And I am left wondering what madness would have made me think that theater was a good idea for someone with intractable epilepsy?

These are some of the worries in my head as we arrive at the theater for dress rehearsal.

PART I: Dress Rehearsal

I now sit watching the teacher give her pre-rehearsal pep talk.  The ONLY parent doing so.  All the other parents have dropped off their kids--ages 8 through 14--for the three hour practice and have gone on to run errands, cook and eat supper with their other family members, or whatever.  I feel sheepishly out of place.  Like an extra appendage.

Could I similarly have dropped Awesome off and left?  Asking myself this question sparks half an hour of debate with myself.  Which is really stupid of me and is a measure of the deferring, self-questioning Midwestern girl still left in me after all these years--the part of me that always second guesses myself no matter how idiotic and ridiculous that second guessing is.   But truthfully--and my second guessing be damned--the answer is no.  No! I could not have responsibly dropped Awesome off and left like the other parents did.

The truth is this:  Awesome has intractable epilepsy with a very strong history of status epilepticus (seizures that don't end without emergency intervention).  Consequently, no matter how "normal" she looks--and she is "normal" except for her intractable epilepsy--Awesome is a special needs child as to the supervision she requires.  I can't pretend that she's not.  I can't minimize her medically necessary need for unusually close supervision.  I've seen too many disasters and near disasters to question this need.  Endured too many medical emergencies.  Spent too many days sitting by her bed in Children's Hospital.

And as nice as Awesome's teacher is, she wouldn't know what to do if Awesome were to have a seizure.  A seizure would also disrupt the rehearsal, traumatize those who witness it (I've seen that time and again), and make it altogether less likely the group would be ready for the play tomorrow.

And so I stay and watch, so I can take responsibility if need be.  So I can minimize the impact if need be.  And so I can monitor for monitoring glitches.   To the degree that it will be possible, I will be the one worrying about Awesome.  The one listening for and responding to any Empatica Embrace seizure alerts.  The one ready to administer seizure first aid.

This is pretty much what I've been doing all year long.  Rather than saddle the dance school teachers and administrators with more responsibility (and in order to minimize the possibility that they'd reject Awesome's participation as more trouble than it was worth), I've sat and watched every single one of Awesome's theater classes through the two way mirror all year long.

For similar reasons, I've also chosen to tell Awesome's teacher the minimum of what she needed to know about Awesome's epilepsy.  My message to her?  Awesome has seizures, but don't worry.  The little seizures aren't a problem; you can ignore them.  And a big seizure, if it should happen, will be something you don't have to take care of--I'll take care of it because I'll be right outside the studio watching.

I've not hidden Awesome's epilepsy from the dance school administrators.  But neither have I gone out of my way to tell each of them.  I've had conversations about Awesome's epilepsy with one of them--initially because I anticipated that Awesome might miss part of this past school year's classes because of an epilepsy pre-surgery work-up (which didn't happen).  Periodically the same administrator has seen me sitting there--the only parent watching the middle school theater class--and stopped to talk to me about Awesome and how things were going with her epilepsy.  I've been very open and honest with her; she's been very kind, interested, and supportive.

I talk about Awesome's epilepsy in the real world (as opposed to this blogsphere where Awesome's identity is hidden) only on a need-to-know basis.  I want people to relate to Awesome as Awesome.  Not to think of her as "that girl with epilepsy."

Awesome's is a very hidden disability.  She's a very normal child.  Bright.  Happy.  Intelligent.  Socially engaged and engaging.  And consequently, her classmates have no idea that there's anything different or disabled about her.  I'm sure her teacher also tends to forget.  And that is as it should be.  It's been easy to minimize Awesome's epilepsy's impact at theater because she's been fortunate not to have had a big seizure during class.  Even Awesome's little seizures somehow seem to have managed to fly by under the radar with her teacher and classmates.  The only thing different about Awesome is the funky watch (the Empatica Embrace seizure detection watch) she wears that doesn't actually tell time.  And the fact that she wears her long shoulder strap purse constantly--even during yoga or class photos--so as to keep her smartphone close by so that her Embrace can alert us to convulsive seizures.  Her classmates have questioned her about these things.  And she's not shy in talking about the fact that she has them--and won't take them off--because of seizures.  But no one's really asked many questions about her epilepsy, even when she mentions it.  Most kids who know Awesome have a hard time believing there's anything "wrong" with her.  And so they seem to take it in stride.  Which is what we want.

But now here we are at the end of the school year, and this task of preparing for and pulling off a public performance is altogether different from the tasks expected of Awesome during the school year.  Here is where the rubber meets the road.  Here, because of the way attention concentrates solely on one person at a time in front of everyone, it will no longer be so easy to hide the obvious or even the not so obvious fact of Awesome's seizures.   The house of cards might fall.   And I'm here to make sure that if it does fall, that the damage is limited.

If Awesome's classmates wonder why I'm the only parent here, no one asks.

Awesome's first up in rehearsal, along with Alice, because the play begins with Margaret talking with Alice.   The girls take their places sitting on the floor at the front of the stage.   Awesome is clearly nervous.  Stress is a strong seizure trigger.  And so she's barely opened her mouth, when it happens.  In the middle of saying her lines, Awesome's eyes flutter upward, her facial muscles relax, and she stops talking.  To others it looks like she is just very anxious, nervous, and flustered--and consequently, has forgotten or is stumbling over her lines.  But I know the truth.  Awesome is having a petit mal seizure.  It lasts all of 4 to 5 seconds.  As she comes out of the seizure she looks confused for a split second, instinctively says "OK then," is momentarily deeply embarrassed, and then, much to my relief, recovers quickly.  She remembers who, what, and where she is--and where she was in her lines.  She even manages to convincingly speak her lines with all the big sister irritation and sarcasm that her character Margaret demands.   Awesome has managed a save!  I quietly rejoice.  The rehearsal goes on.

Awesome, like her brothers, has been on the stage since before she knew she existed.  Since before she began forming consistently conscious, accessible, permanent memories.  As a 4 year old playing her first violin recital, she'd walked to the center of the stage, bowed as she'd been taught, and proceeded to play one of the "Twinkle, Twinkle, Little Star" variations.  Not flawlessly, but well enough. And then, at the end of her Twinkling, she'd tucked her violin back into "rest position" and bowed again to loud applause.  The Suzuki method of music education puts kids on stage when they're very young, often before they can play anything at all on their instrument--when they've just only learned to hold the instrument properly and to bow properly. When kids get used to being on stage at a young age, they learn to be comfortable there.  They also learn through making and watching others make mistakes onstage--and through the kindness of the adults supervising--that the world doesn't end if you make a mistake on stage.  And so they learn to relax and actually concentrate on stage.  They also learn that the butterflies everyone gets at first, dissipate quickly.  Because Awesome was a Suzuki kid from a young age, she's comfortable on stage.  Her butterflies go away quickly.

Of course, Awesome now has an additional reason to be anxious on stage--seizures.  Awesome's little petit mal seizures interfere with her ability to attend, to remember, to talk, and to be conscious at all.  But if Awesome were to have a convulsive seizure, it would do more.  It could disrupt the entire experience for everyone.  Awesome's seizures could negatively impact the culmination of half a year's work, not only for Awesome, but also for her classmates.  Awesome is definitely doing some high stakes gambling with Alice.  It's a heavy burden for a child to bear.  But Awesome bears it gracefully..and confidently.  She is, after all, Awesome

I'm praying that what I just witnessed was the end of Awesome's butterflies. That the next time she speaks, the tension will have lifted.  That she'll have gotten caught up in the positive vibes, the positive energy, the positive hard work being done by everyone tonight.  Enough mistakes are being made that no one should feel nervous about not being perfect.  The teacher is doing an excellent job keeping things positive and encouraging.  The next time I see Awesome on stage and in the spotlight, I see that my prayers have been answered.  Awesome has rallied.  She isn't nervous at all.  All goes smoothly.  She looks happy, confident, engaged, and relaxed.

My biggest worry now shifts to the time that Awesome is back stage.  Tonight, right after the teacher's pep-talk, I'd told the stage manager--whom I'd just met for the first time tonight--that Awesome has seizures and asked her to look out for her backstage.  I told her that Awesome really shouldn't be alone backstage.  That she needed to be with others in case of a seizure.  That she shouldn't even be allowed to go to the bathroom alone without making sure of the time she left and when she should be back--in case she doesn't come back, so that we know when to start knocking on the door or start trying to use the safety lock to open the locked door.

The young woman with dreadlocks looks simultaneously confused, concerned, and overwhelmed.  It's not good to have sprung this on her in the moment.  But honestly, I'd never seen her before tonight.  And there'd been no time to discuss details with Awesome's teacher ahead of time.  Awesome had missed the last class because of a doctor's appointment.  The stage manager kindly assures me that Awesome won't be alone.  But I know that the manager has other things to do other than make sure that Awesome doesn't get left behind or leave the group for a moment to fetch something.   And for someone who's just heard this for the first time--and is already busy and stressed--it's probably hard to know what to do with this information and my request.  How seriously to take it.  And if taken seriously, how to accomplish it while doing everything else she has to do backstage.

During last year's play, monitoring Awesome had been easier.  I hadn't worried much because Awesome's best friend Ellie was also a part of the Theater class and its rehearsal and performances.  I didn't worry when Awesome was back stage because the two were always together.  Ellie knows that Awesome can't be left alone.  Ellie knows the drill.  But Ellie didn't sign up for Theater this year.  And so it's harder.

This year, I'm relying mainly on Awesome's less than perfectly dependable Empatica Embrace seizure detection watch to keep her monitored.  I'm hoping that it will go off if Awesome has a convulsive seizure.  The Embrace would call my phone--which I have on vibrate.  And which I'm holding in my hand so as to feel the vibrations if  Embrace calls.  Of course, if I know she's seizing but I don't know exactly where she is backstage--there are three sides to the backstage area plus another holding area off to the side-- that's a problem.  I imagine a scenario in which, after getting an Embrace alert, I run headlong to the backstage area, looking everywhere for Awesome.  Not finding her.  Panicking.  Causing pandemonium.  Interrupting the play rehearsal.  Could I do that searching for Awesome without sounding a general alarm as I go running across the stage area?  Could I quietly find Awesome and care for her just as quietly and inconspicuously?  I think about these things as I sit watching the rehearsal.

It's been a good 10 minutes since I've seen Awesome.  I breathe a sigh of relief as I see her entering the scene as the Mock Turtle.  She says her lines well.  And then dances with her lobsters as a part of the Lobster Quadrille.  Unfortunately, the repetitive, choreographed arm movements of the dance set off her Empatica Embrace seizure detection watch's alarm.  The red lights go racing around the watch face.  Awesome stops to tap her watch face repeatedly--the only way to stop the alert before it sounds the alarm.  I text her dad--who is at home--and her brother, both of whom are listed--along with me--on the Empatica caregiver alert call list, to tell them both that there was no convulsive seizure; it was a false alarm.

Now again, Awesome has disappeared backstage.  It's been a good 15 minutes since I've seen her.  She's now one of the only cast members not on stage.  I'm tired of worrying about it all.  It's so difficult to determine what's reasonable.   There have been so many instances in which we relaxed our watching and have narrowly avoided disaster.  Or have arrived to find disaster, knowing that had we waited even longer, it could have been catastrophic.  When things start to go bad, they can go bad very quickly.  One minute she's standing and fine, the next, she's falling to the ground.  One must be prepared and act quickly.  And afterward we tend to vow to be more diligently watchful.  Other times we've been diligent, not relaxing our watchfulness, and all that watchfulness was unnecessary because all was well.  Things change so quickly when they change.  Monitoring can be such a mind game.  It's hard to feel what you're doing is spot on.   Just as I start to get nervous about Awesome being alone for so long, I see her hanging out, peeking out around the curtains on the side stage.  She's by herself.  Alone again.  Being hypervigilant all the time is both confusing and exhausting.  She's obviously fine right now.  But will she stay fine?

Now, to end the play, Awesome's back on center stage again as Margaret.  She does wonderfully.  I'm very thankful that things have gone so well during dress rehearsal.  Later Awesome tells me that she only had two small seizures the entire three hours.  Considering the pace at which she was having them earlier, this is a no small miracle.

Before we leave the theater, I seek out Awesome's teacher.  She and the stage manager have clearly been talking about Awesome.  She tells me that they've decided Awesome will stick beside the stage manager tomorrow during the plays.  Awesome will help the manager so that Awesome is never alone backstage.  Awesome's teacher is very kind and gracious.  She takes it all in stride.  Very briefly we discuss strategy for the what-if's tomorrow.  I assure her we'll remove Awesome as quickly as possible from sight if she has a convulsive seizure.  I tell her that saying Awesome's name or touching her on the arm if she were to have petit mal seizure during the performance, will bring Awesome back more quickly.

We go home from the three hour dress rehearsal both exhausted and relieved.

PART II: 1st Performance

The next day we arrive at the theater.  There are two performances scheduled--one at 5:00 and one at 7:00.  I've made sure Awesome is well fed and has had her afternoon CBD (medical cannabis) oil.  I'm fairly worried.  Awesome's big seizures have been 10 days apart lately--give or take a day.  It's been 9 days since her last big seizure.  There's no doubt she's within the danger zone for a big seizure.  All the stress also worries me.  Stress--good or bad--tends to trigger big seizures.  I've asked friends and family to pray that Awesome can get through the evening without a big seizure. Awesome's little seizures have been so plentiful today  that I figure they are inevitable during the performances.  We'll just pray they don't disrupt too long or too noticeably.  Awesome's excited and runs ahead into the theater.  I follow slowly behind, feeling the tension rising within me as I think about all that could go wrong in the next four hours.  Again I question just how wise it was to have Awesome take a theater class that requires a performance at the end.

I walk in the theater observation room and sit for a second to gather my thoughts and fortitude and organize our things before proceeding into the theater itself.  As I stand to walk into the theater, the dance school's Executive Director, someone I've seen around but with whom I've never spoken about Awesome and her seizures, walks into the room.

Noticing that I'm heading towards the theater door, she informs me that parents aren't allowed in the theater right now.  At all.  I explain that my daughter Awesome has epilepsy and that I need to be nearby where I can see her.  My explanation doesn't impress her.  She tells me that I can't go into the theater.

Patiently, I explain again, why I'm there.  I have to be able to be close by in case of a seizure--that I am doing something medically necessary in watching my daughter.  My daughter has intractable seizures.  Clearly she thinks I'm making excuses to get away with getting around the rule so that I can be first in the theater; she doesn't seem to care what I'm saying.

She reiterates her rule.  I re-explain why it shouldn't apply to me.  She reiterates that it does apply to me.  She offers that if I need to reserve a seat in the theater I can put my stuff down on the seat but I can't stay in there.  I explain for the fourth time, but realize that nothing I say to her seems to matter or to be heard.  She says that if I have to be somewhere I can stay in the observation room.  I explain again for the fifth time that I need to be in theater where I can see Awesome--I can't see her from this observation room.

She asks if I've watched Awesome during all her theater classes, clearly thinking I won't have done so (which she thinks would prove that I don't need to watch her now either).  I tell her I've sat and watched every single class all year long--and, in fact, that I watched Awesome last night in the theater during dress rehearsal--and it wasn't a problem.  She says that she prefers that if stay in the observation room.  I say I can't see Awesome from here.  She repeats that she doesn't want me in the theater.  I've tried my hardest to be patient and respectful, but by now I'm exasperated, slightly angry (too weary to rise to the level of real anger), and way over-stressed.  I look irritated and simply turn away from her and ignore her.  Since she's turned her face against me, stopped up her ears, and doesn't care what I say, I'm done with the conversation.  I don't have the energy to deal with her.  I'm tired and stressed.   Why does life with epilepsy have to always be so hard?  She leaves the room.

It's not like I don't already have enough stress in my life.  It's not like I don't already have enough worries about the performance this evening. This woman doesn't know my child's medical history or her medical challenges.  The battles we fight every day.  She doesn't understand that we are gambling with Alice. And that she's just increased my stress by half again by making me feel like a criminal by doing what is medically necessary for my child.

Few in our society understand the stress and dilemmas of epilepsy.  The failure of Epilepsy Awareness to educate the public in even the most rudimentary way makes life much harder for those with epilepsy and those who love and care for those with epilepsy.

I am miserable.  I wonder again if I'm simply crazy for ever having signed Awesome up for a theater class with a major performance.  But then I start thinking about how sad Awesome's life would be without extra-curricular activities.  And how she loves this class.  And being a part of the play.   I also sit there feeling bad for Awesome, thinking about the fact that Awesome will have to deal with bullshit much worse than this for the rest of her life.  I think about our recent travails with a local exercise facility that treats epilepsy patients like lepers.  I sit in the dark and think about how long the evening's going to be.  And how worried I am that Awesome will have a big seizure.  The repeating merry-go-round of all these thoughts go through my head for the next hour while I sit in the dark.  Thankfully, big seizure-wise, the hour passes without incident.

The minute the theater opens for seating, I take a seat in the front row close to the door.   Awesome's brother, Joseph arrives and takes the seat beside me.  We talk about strategy.  We agree that if Awesome were to have a big seizure, the goal would be for us to jump up and carry her off stage together as quickly as possible.

As it turns out, we need not have worried.  The 5:00 performance of the play goes stupendously.  Awesome is simply awesome.  Confident and sure of herself even in the first scene, Awesome plays Margaret perfectly as an irritated, boring, joyless big sister.  The whole play goes well.  No discernible little seizures.  And no big seizures.  No false alarms from the Empatica Embrace seizure alert watch.  As the Mock Turtle, Awesome is appropriately sad and forlorn.  The Lobster Quadrille dance--an amazingly joyful and celebratory little dance--doesn't set off the seizure detection watch this time.

Last night at dress rehearsal I'd wondered how in the world the play would come together.  So many kids didn't know their lines.  There were additional issues too.  But tonight's first performance is almost flawless.  The kids are excited.  Jazzed.  Full of energy.  Each one a star.  They shine brightly.  And Awesome, because she has overcome so much to be here doing what she's doing with bravery, fortitude, and self-confidence, shines doubly brightly.  At the end of the first performance, I am very thankful, amazed, and relieved.

Now we have only a pizza party and one more performance to get through....

Between plays, I rush to take Awesome her meal.  Because of her special diet for epilepsy, she can't eat the pizza that the other kids are eating.  Awesome's used to having a special diet.  She takes it in stride.  She's just happy to be hanging with her classmates, talking.  Awesome's best friend Ellie and her mom Lisa had attended the first performance.  We sit and talk now in the hallway.  Meanwhile the executive director walks by us several times.  She seems to have realized that she was too harsh.  She tries to be friendly.  I'm still upset at the dilemma and stress she caused me by her lack of understanding and by her inflexibility.  A few minutes later when I walk in to take my place in the theater near the door, she continues her friendly overtures.  She offers me a water.  I decline.  I decide that we'll have to talk through our differences another time.  And I'll want to do that on another day.  Graciously.  So as to educate and build bridges and help any who might follow after.  But right now, my mind is elsewhere.

Part III: 2nd Performance

We have one more performance to get through.  Awesome's dad David arrives and takes his place beside me--her brother Joseph went home earlier.  David and I agree that if Awesome were to have a convulsive seizure, that our first priority would be to carry her offstage.   Our daughter-in-law Alyssa (married to Awesome's older brother) arrives along with her 1 year old and 3 year old.  The director asks if she can sit beside Alyssa close to the door.  Alyssa says sure.  Alyssa's daughter Skye moves down to sit on my lap.  Skye is super excited.  She's looking forward to seeing Awesome in the play.  Alyssa lasts only a few minutes with the one year old before exiting to the observation room.

The second performance goes just as splendidly as the first.  Awesome plays her parts in an amazing and almost flawless way.  Not a hint of a seizure during the whole play.  I try not to worry about whether Awesome is being adequately supervised backstage, but I still breathe a sigh of relief every time she reappears on stage. Skye sits transfixed on my lap for the entire hour long play.

The difference between the first and second performances is astounding.  The kids' energy and comfort on stage has only increased.  They're not just going through the motions, but they're really getting into their roles.  The whole performance is amazing.  A work of art.  A real accomplishment on their part.  As the actors all come back on the stage for a curtain call at play's end, Awesome is front and center.  She is confident.  Radiant.  Glowing with pride, joy, and happiness.  She stands for photos with her arms wide and foot extended.  The star position.  She is a star.  Along with her fellow classmates.  They've all struggled, persevered, and triumphed.  And Awesome doubly so.

Whatever thoughts I had about having been crazy to have Awesome take this class have been banished.   Having a child with intractable epilepsy take a theater class that culminated in a big performance was very much of a gamble. We gambled on the class.  And on Alice.  I'm happy we did.  Nothing gambled; nothing gained.  Much gambled; much gained.

The first thing Awesome says when she finds us in the crowd milling around the lobby is that she wants to sign up for Theater class again next year.  She's radiant.  Confident.  Joyful.  And floating on air.    In spite of Epilepsy, Awesome's triumphed. She's triumphed in terms of optimism, confidence, social participation, public performance, and even artistic expression.  She's been an integral part of something bigger than herself.  The Arts.  A group effort.  And she's done it all with grace and dignity and bravery...because Awesome is way more than her Intractable Epilepsy.

Awesome always has been, and still remains, Awesome.