Betwixt and Between: Incongruent Realities

I love you, my child.  My bright eyed.  My smiling.

I love your wit.  The sparkle in your eyes.

I love the way you are you and apologize to no one for being you.   You are at ease with yourself.  And so you put others at ease. 

You drink in life--and all that it has to offer--even as the thirsty gulp water--with pure joy in your eyes.

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It is 1:15 on a weekday afternoon.  My daughter is sprawled out on the tile floor of a public bathroom just two feet away from the toilet, so deeply asleep that she is nearly unconscious.  I sit cross-legged on the floor beside her.

Five minutes ago we were simply a normal family out shopping on an early weekday afternoon--mom, dad, and young teen.  I was helping my husband David pick out new frames for his glasses.  Plastic or wire frames?  We'd settled on wire.   Should he stick with his current look of small circular frames--or try something new?

While we were debating these questions, our daughter Awesome, looking very much like the young teenager she is--and not at all wanting to be a part of any decision-making about Dad's glasses--was wandering around the optical showroom, headphones on, listening to a playlist on her Iphone.

David and I had just settled on the round wire-frames--we'd decided this was his signature look; there was no reason to change it--when Awesome suddenly came scurrying up, pulled me abruptly aside, and quietly, but urgently whispered, "Help me!  I'm having a really strong aura."

From the look in her eyes, this was serious.  There was no time to waste.  A big seizure was imminent.  And so, just like that, we went from normal family mode into emergency crisis management mode.  My pressing concern now became keeping Awesome on her feet long enough to find the most private corner of the store--a hidden corner behind furniture, a side hallway, or a bathroom--where we could shelter out of sight and sound.   We needed to handle this seizure ourselves.  Without creating a public spectacle.  Without bystanders being distressed and feeling the imperative to call 911.  We needed privacy.  And the sooner the better.

This drill was familiar--we'd been through it many times before; we knew what to do.  Awesome slipped her arm firmly around my neck and grasped my shoulder; simultaneously, I slipped my right arm firmly around her waist.  We were a unit now; we would move--mother and daughter together--as though we were one.  For as long as she could walk, I would guide her.  And when she could no longer walk, I would keep her upright and drag her along until we reached our haven.

We walked away from the store front.  Away from people.  Towards privacy.  My eyes adjusted to the lesser light, scanning the unfamiliar space, and immediately they fell upon a door in the wall, straight ahead.  A door marked "Women."  Quickly we moved toward it.  Momentary prayers that the door would be unlocked--and the restroom empty--were answered.  We'd almost succeeded in our goal; but then, just as I'd grasped the handle and pulled the door open, the first motor symptoms of Awesome's focal seizure hit; her head and neck turned steadily upward and to the right; her right arm went out and upward; and her trunk began to twist slowly to the right.  Awesome describes this twisting (which is usually one of the last things she remembers before losing consciousness), as exquisitely painful, as her body turns "further than a body should turn."  This turning and twisting creates an additional, different problem--the problem of disequilibrium.  Being off-balance makes it very hard for Awesome--whether she's sitting or standing when the seizure hits--to remain upright; no longer balanced, she tends to fall over.  And so, as soon the turning and twisting started, despite my firm grip around Awesome's waist, it became even more difficult to keep her upright and balanced.  Not only that, but I also struggled now, as wide as we were--two abreast, with Awesome now twisted around and arm extended--to negotiate getting us through the door.  Somehow though, we managed.  Once through the door, having paused to pull it closed behind us, I felt a great relief.   Privacy! 

I now felt I could deal with whatever happened next--now that I knew that we would be able to negotiate it on our own terms.  Without worrying about the reaction of others to and intervention of others in the seizure drama about to unfold.

Privacy came not a minute too soon.  Two steps inside the door, Awesome could not only no longer walk, but her twisting body also suddenly became as stiff as a board.  During this, the tonic phase of her tonic-clonic seizure, a phase when all the muscles in the body tighten and become rigid, Awesome was like one long, stiff plank; she couldn't be folded or bent.   As she became stiff, she became "dead weight" and her center of gravity shifted, and once again, adjusting to the change, I struggled to keep her upright.  Again, somehow I managed. 

But now, just a few seconds later, having dragged Awesome to the center of the large restroom, I struggled with even greater difficulty as I attempted to lay her safely down on the floor. I had no time to waste, as she'd be transitioning from tonic phase to clonic phase--the convulsing phase--any second now.  Awesome needed to be on the floor by the time she started convulsing; I wouldn't be able to hold her while she was convulsing.  It was much too hard; she would fall.  And I also needed her on the floor so that my hands would be free to administer seizure first aid and rescue meds.

It's a difficult and awkward task for two people to reposition a very stiff, unconscious person from upright to lying down on the floor; but doing so alone, was nearly impossible.  My first attempt was unsuccessful; the second one more successful  But then, as I started to succeed, when I had my 115 lb, stiff, unconscious daughter  halfway to floor, I suddenly realized that there was a problem:  her head was going to be immediately vulnerable to injury on the hard tile floor.  And more so, as the clonic portion of the seizure had started as I was lowering her; this would mean that as soon as I put her down, her head would begin hitting hit the tile floor over and over again as she convulsed.  I needed something soft under Awesome's head to cushion and protect it.  But the only thing available, I realized now--my own sweater--was still on me--it was still being worn.  I should have taken it off earlier, as soon as Awesome told me she was having an aura.  But I hadn't thought that far ahead.  How could I get my sweater off while I was holding Awesome with both hands?  And if I put her down, could I really stand to hear her head hitting the tile repeatedly while I tried to get my sweater off?

There is nothing easy about giving spur of the moment seizure first aid.  Seizure first aid calls for fast, furious thinking and equally fast, furious, but carefully considered, smart action.  Sometimes it seems like a game of chess in which the moves come so fast and furiously that you only hope and pray that you're smart and strategic enough not to screw up the whole thing.  I felt suddenly like I had already been bested in this strategy game.  I'd failed to think far enough ahead.  I'd made a blunder.  I was about to be check-mated.

Thankfully, I was rescued from my conundrum, for just at that moment, David burst in through the door--closing the door behind himself to preserve privacy.  Now, at my request, David took over holding Awesome--suspended above the ground--for a few seconds while I hastily tore off my sweater, folded it over, and placed it on the floor where I estimated Awesome's head would soon be.  And then carefully, the two of us eased Awesome onto to the tile floor of the public bathroom.

And not a minute too soon!  Awesome was now very actively seizing--convulsing (the clonic phase of the tonic-clonic seizure).  Together then, David and I administered seizure first aid.  Ideally--done right--seizure first aid really is, we've found, a two person job....  And it can keep two people hopping to stay ahead of the curve!

First, I removed Awesome's new glasses that were already half off and in danger of being damaged.  Folding them, I carefully set them down on the floor, several feet away, out of harm's way. 

Next, together, David and I turned Awesome onto her side, in order to keep her airways clear of both the excess saliva that happens with seizures, but also potentially, from reflux or vomit during or after the seizure,  While vomiting during a seizure is rare, we do see it sometimes.  Awesome had already once paid the price for having been in the "wrong" aka a risky position, during one of her seizures, a seizure in which she'd vomited, aspirated, and then spent 18 days in the hospital with aspiration pneumonia.  We would not risk making that mistake again.  Getting Awesome in a safe position on her side is now one of our first priorities when administering seizure first aid.

And though my sweater--now under her head--was keeping Awesome from repeatedly hitting the bare tile floor with her head, it was soon clear that the sweater was not really enough protection.  And so, kneeling by Awesome's side, David now carefully cradled Awesome's head in his hands to protect her head from injury. 

Meanwhile I struggled to get the rescue meds from the rescue medication bag I was wearing.

In the midst of these efforts, the Empatica Embrace seizure detection watch did its job--which is to send a phone and a text alert to caregivers after detecting at least 20 seconds of vigorous motor movement.  The watch called our--David and my--phones, setting off a cacophony of special ring tones.  Not wanting to call any attention to what was happening in the Women's bathroom, in the midst of all this chaos, we paused what we were doing, scrambling to silence our phones.  This silencing accomplished, David went back to cradling Awesome's head while I turned my attention to administering the emergency CBD into the mucus membranes in the outer pocket of Awesome's mouth. 

A minute later and only about two minutes after the convulsive seizure had begun, the seizure began to calm.  It was soon over--signaled by Awesome closing her eyes.  Thank goodness this was a seizure that ended on its own--it was not a status seizure!  The pharmaceutical rescue med Diastat had not been needed to stop it.

David and I both looked at each other and heaved a sigh of relief.  All was well.  The seizure crisis appeared to be over, though Awesome would need to continue to be closely monitored for the next 15 minutes to an hour--or however long it took her to sleep and then wake up, and return to enough of a baseline so that she could get up and reasonably walk, with assistance, to the car.  I would need to sit beside Awesome and watch her carefully for signs of problems--breathing issues, the start of another seizure, or whatever.

But now, as soon as the seizure was over, I urged David to go back to the optical sales floor, back to his salesperson, and finish purchasing--ordering--his glasses.  We were at the optical store to accomplish the goal of ordering his new glasses; we shouldn't allow the seizure keep us from accomplishing that goal.

And so, less than five minutes after Awesome had first urgently whispered "Help me!," David left the bathroom to go seek out the optical salesclerk, and I was left sitting on the bathroom floor watching Awesome in her post-ictal sleep.  Thinking about how much I hate epilepsy.  About how it affects our lives.  And really, about how very little margin we have in our lives from one moment to the next. 

And as I sat there, I couldn't help but note too, how clean the public bathroom floor on which Awesome lay--and I sat--was.  Notwithstanding the one dead centipede in the crack between the wall and the floor.  I decided to ignore the centipede and concentrate on the positive.

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I sit beside you, my fallen child.  And the picture is incongruous and troubling.  Epilepsy has laid you low yet again.  Taken the smile from your face.  The sparkle from your eye. 

It has conspired to steal your dignity, your independence, and your developmental competence (at least in the moment) from you.  It conspires to steal from us both a sense of normality and dignity.  Epilepsy is the tyranny of the unexpected.

And so, here we are, left sheltering in a public bathroom.  You, sprawled out on the floor, oblivious to the world and your own existence and all that has just transpired and even the fact that you are lying on a public restroom floor.  And me, sitting here, standing guard over you, watching for alterations in your breathing, your coloring....or really anything that would send me scrambling to dial 911 for medical assistance.

You will sleep soundly for 20 more minutes.  And mumble incoherently for another 10 minutes.  You, my supremely verbal child--who said her first words at 6 months, who spoke in sentences at 1 year, who learned to read as a 4 year old, and who is a gifted writer--reduced to incoherent verbal non-sense as you struggle to express thoughts that can't quite form, and once formed, that you can't express. 

And because I want so desperately for you to be OK,  I will try too soon to get you up off the floor of the bathroom.  To get you to your feet so that we can walk out of this public bathroom together--once again, mother and daughter, as a unit, you with your arm around me, me with my arm around your waist, and put this seizure experience behind us.  And I will succeed in getting you to your feet, but then you will stumble, you'll crumple like a rag doll, and you'll collapse.  Like a drunk.  And so, I'll be thankful that my arms were firmly around your chest, as I struggle to ease you back to the ground again, to pillow your head with my sweater yet again.  And you'll stop mumbling incoherently then, spent from the effort of trying to speak and to stand.  I'll arrange you on your side again.  And you'll sleep for another 10 minutes on the floor of the public bathroom.  And I'll sit beside you again, in some living version of purgatory, thinking again about how exquisitely painful it is to watch epilepsy do this to you.  My child.  My bright-eyed. My smiling.

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Thankfully, no one has needed the Women's restroom during the time we've occupied it.  No one has knocked on the door.  No one but David has come through the door.

Forty minutes after her seizure started, Awesome, still lying on the floor of the public bathroom, suddenly stirs, opens her eyes, and asks in perfect English, "What happened?  Did I have a seizure?"  She is verbally coherent again.  And she's not pleased to find herself lying on the floor of the Women's room.  I help her to sit up, watching over her to make sure she doesn't suddenly fall over.

After sitting there for a couple of minutes--because I insist that she do so before trying to stand-- she asks if where Dad is and whether we can go to the car.  While watching her, I stuff her Iphone, her headphones, her glasses, and now my saliva soaked sweater into my over-sized purse.  Having slung my purse and the rescue medicine bag over my head, wearing them across my chest, I'm now prepared to help Awesome to her feet and assist her in walking to the car.  We'll shelter in the car until David is done ordering his eyeglasses. 

We leave the Women's room in the same way that we entered it.  Awesome slips her arm firmly around my neck and grasps my shoulder; simultaneously, I slip my right arm firmly around her waist.  A unit again, we move--mother and daughter together.  She propels herself forward, mostly on her own.  I have my arm around her as insurance against her falling.  And periodically, she does need my help.  She is not steady on her feet.  She stumbles, her consciousness momentarily falters, and she lurches like a drunk.  I tighten my grip on her waist.  She looks up at me and smiles.  I reassure her and tell her she's doing well.  I tell her that, "It's all right.  You're going to be fine.  Don't worry.  It's OK."  And we walk across the long store, out the front door, and along the sidewalk to the place where our car is parked, in fits and starts.  Fine one minute.  And not so fine the next minute.  I help her into the middle seat of our mini van.  She is exhausted.  I suggest that she use her own sweater, on the seat of the car, as a pillow, and lie down across the bench of the middle seat.  I start the car so the air-conditioning will come on and we won't roast in the summer heat. 

As we sit waiting for David, who calls on the phone to tell us he'll be out in just a minute--that he's nearly done.  Awesome is restless and bothered.  Sometimes she lies down--she rests and momentarily dozes.  Sometimes she sits up, emotionally upset, close to tears--and sometimes the tears come--and she complains. She's tired of all this.  Tired of being OK one minute and not OK the next.  Tired of having seizures.  Tired of being tired.  Tired of good days like today turning into bad days.  Into sad days.  Tired of losing so much time.  Tired of changed plans.  Tired of epilepsy.

It's exquisitely painful sitting there listening to Awesome.  Everything she feels is valid.  Everything she says is true.  Everything she says is what I've spent the last 45 minutes thinking and feeling while sitting on the floor of the public bathroom.  And it's all the more painful because I am impotent.  I can do nothing to make any of it any better.  Or even different.

As I sit in the car watching Awesome mourning what epilepsy does to her--the fact that she can walk into the store as a normal teenager and ten minutes later, be sprawled out on the floor of the bathroom, unconscious, and three-quarters of an hour later, need assistance to be able to walk out of the store, stumbling like a drunk--I see the cars going by on the busy street behind her.  I think about the fact that almost all the people in those cars and in the stores around us take for granted that they will be conscious and functional from one minute to the next.  Something that Awesome absolutely can't take for granted.  I think about the fact that our whole lives--our family's life--are organized around the fact that consciousness and functionality could be there one minute and gone the next.  And around the fact, that you have to anticipate that loss.  And plan for it.   Because it happens over and over again for Awesome.