Fixing a Smile: A Story of How Epilepsy Can Make it Hard to Go Along and Get Along.

This is yet another incident illustrating the profound failure of epilepsy awareness in our society. 

Last week Awesome had an appointment with her orthodontist--the third in this her second round of braces.

First, let me say that I like Awesome's orthodontist.  He's a leader in his field with somewhat of an excellent national reputation for something or other, but more importantly, he's a genuinely nice man.  His office staff too are excellent: competent, friendly, and really, every kind of wonderful.   Everything about his office--the place and the architect-designed open shared spaces; the routines; and the way you make your way through the whole orthodontic process--is well-designed in a clever, fun, and innovative way.  And his practice incorporates not only oodles of tween- and teen-appealing perks--from game stations to free ice cream--and conveniences like a space with disposable toothbrushes and floss--but also, the latest in imaging and other technologies.  It's all like a well-designed and finely tuned machine--only without the usual impersonal downsides of offices designed for efficiency.  And unifying the whole experience--both for atmosphere and energy--there's background music.  This isn't your usual generic, depressing blah; rather, the playlists are lively, eclectic, and fun--the perfect enhancers to keep the whole orthodontic experience happy and upbeat.

Impressive?  You betcha.  The whole place, space, and experience.  From start to finish.  In visit after visit.

Things have been impressive this way since Awesome first became a patient with her first round of braces several years ago.  And it's the way things have been so far also for round two.  We've never had any reason to expect that things wouldn't continue to be all shades of wonderful for the next year and half as Awesome continues to be an orthodontic patient.

But life--and especially life with epilepsy--has a way of not letting us coast.  Of not letting us get too comfortable.  Of waking us up and making things difficult on a fairly constant basis.

And so, because that is the way life with epilepsy is, as soon as we stepped across the threshold into the orthodontist's office last week, there was trouble. 

From the first moment that we heard the music, there it was--that low, powerful sub-woofer rumble that makes your chest vibrate with every bass chord.  A low rumbling that immediately made me uncomfortable and that soon gave me a headache (despite the fact that I rarely get headaches).

But more importantly, we learned quickly that that same low rumbling triggers auras for Awesome. 

What are auras and why do they matter?  In the context of epilepsy, auras are seizures-that, instead of affecting the whole brain--initially at least--affect only a part of it.  Auras often serve as the advance warning for more widespread, more serious seizure activity that often follows--as the seizure activity spreads.  Before starting CBD (cannabidiol), all of Awesome's auras inevitably spread to became convulsive seizures.  Since CBD, her auras exist on a spectrum; from very strong and unstoppable ones that quickly become convulsive seizures--to milder ones that pass on their own without spreading.  However, most are now in the middle range and could go either way.   And so, when Awesome feels an aura coming on, she takes it seriously.  She stops whatever she's doing and uses various techniques to try to calm and center herself.  And my job is to both try to assist her in doing that--if she needs help--but also to try to assess active triggers--and decrease or eliminate them, whether that means removing triggers from the environment or removing Awesome from the triggers. I also try to make sure that if the aura goes on over into a seizure, that I have what I need for seizure first aid, but also--if we're in public--that I know what my plan is for that particular place and space, but also for handling by-stander's reactions/actions.

And so, from the moment we entered the orthodontist's office last week, instead of my usual routine of reading a book and keeping an eye on Awesome in a relaxed way, I was thrown into a debate with myself about what to do--or not do--about the sub-woofer and its effect on Awesome.  The fact was, the sub-woofer was triggering auras for Awesome, one after another, after another.  At first I assumed that all we had to do to solve the problem was to wait for that particular song to end.   After all, in the nearly 2 years that Awesome had been an orthodontic patient, until that day I'd never heard a single song with a rumbling sub-woofer bass line on any office playlist.  If we simply gritted our teeth through one song, the next would surely be woofer-free.  Or so I thought.

But, the next song and the next too had the same rumbling bass line.  And the two after that too.  Maybe if the wait time had been very short--as it usually is--and the orthodontic care abbreviated--like it is on occasion--Awesome could have withstood half a dozen songs with a rumbling baseline and then made a break for the door, but luck was not on our side this day.  Instead of the usual 3 to 5 minute wait to get into the chair with her technician (in deference to Awesome's epilepsy, at their own suggestion, the orthodontic office had decided to have one particular technician work with Awesome each time), the wait this time was longer...  Awesome's technician had another patient--one that needed lengthy care--in her chair.  And so the minutes ticked by one after another, until we'd been waiting 10, 15, 20...plus minutes

I really didn't want to admit it, but Awesome was really struggling.  And struggling hard.  She was having aura after aura.  One aura barely ended before another began.  Having aura after aura is the equivalent of sitting in a room full of fireworks, lighting match after match and waiting to see if the next spark is going to ignite the whole room.  Ill-advised at best.  Dangerous at worst.  And certainly  stress and anxiety-inducing.  Not just for me, but for Awesome.  And stress is itself a seizure trigger.

I'm a deferring Midwesterner through and through.  Given the choice between asking for something to be changed and having to suffer, I will choose to suffer every time.  Years of dealing with inane, uncaring rule-oriented institutions staffed by unmoved rule-oriented authority figures has only made me all the more likely to choose the road of suffering rather than seek relief through boat-rocking.  In my experience, asking for special consideration is almost always futile--and frequently simply results in emotional pain and humiliation to add to whatever other suffering one was seeking to avoid.  Still, as we sat waiting for Awesome's usual technician, and I sat watching Awesome suffer and struggle, I knew that it was well-past the time when I should have acted.  I could no longer reasonably let things continue the way they were. 

And so I screwed up my mama bear courage, walked over, and asked the appointment clerk if it were possible to change the music to something that didn't have a rumbling bass.  Nothing is ever easy when you try to rock the boat.  The appointment clerk, through a forced smile told me I'd have to talk to a certain orthodontic technician--pointing vaguely in the direction of a room filled with technicians, most of whose names I didn't know--who was in charge of the music.  A few gyrations later, having figured out which one was the keeper of the music,  I screwed up my courage--fortified once again by observing how hard Awesome was struggling to not slip into a big seizure--and approached the music keeping technician, who, immediately and kindly, changed the song.  Was it really that easy?

No it wasn't.  The technician hadn't really understood that I was asking for the rumbling bass to go away; instead she must have thought I was just being a controlling jerk who was asking her to skip a song I didn't like.  The same chest-vibrating sub-woofer rumbled through the next song as it had rumbled through every song in the last nearly half an hour that we'd been waiting.  Defeated momentarily,  I slunk back to the stool beside the treatment chair where Awesome sat.  Nervously, I asked Awesome if she was OK.  She could not look up at me--she was using an app on her phone that helps her calm and center herself in hopes of keeping auras from generalizing into convulsive seizures.   Without looking up, she told me she was very afraid because her current aura was a particularly strong one.

I felt caught between a rock and a hard place.  I'd already made two unsuccessful attempts to fix the problem.   As far as I could tell, I had three choices.  First, I could make a third request--with more in the way of explanation than the last attempt,.  Or secondly, I could simply continue to watch Awesome struggle and perhaps have a convulsive seizure.  Or thirdly, we could simply get up and leave the office.  None of my possible choices allowed us to avoid public drama.  None of them allowed us to simply go along and get along.  The music with the rumbling bass simply had to go if we were going to avoid a convulsive seizure.  I took a few seconds to imagine what it would be like for Awesome to have a full tonic-clonic seizure right there in the middle of the treatment room in front of 20 adults and kids.  No, that was not my first choice.  I also suddenly realized that if Awesome continued to have auras like she was having them now, that the technician and the orthodontist would neither one be able to work on her teeth.  She'd need to continue to be in aura quelling mode--which takes concerted, centered concentration.  And lest you think that it's impossible to quell an aura and avoid a seizure, know that during the 1970's and 1980's--before the more modern AED's made their appearance and caused the effort to be abandoned for an easier fix--a pill--that there were institutions (and the studies still exist), that aimed to use relaxation, meditation, and biofeedback to help those with epilepsy learn how to stop seizures at the aura stage.  So what good would it do to be here going through all this if they couldn't work on Awesome's teeth?  None whatsoever.  And what of getting up and leaving?  That made no sense.  Awesome needed orthodontic care; she needed her braces tightened.  Rubber bands and all that...  There was no easy way out with any of this.

And so, despite my Midwestern farm girl's discomfort with the need to be assertive and ask for a change in the shared environment, I still simply had to act.  I had to ask the technician in a precise, clear, unmistakable way, yet again, to get rid of the rumbling bass songs. 

And so I approached the keeper of the music a second time and carefully, patiently explained the situation, and asked that the playlist be changed to one that didn't involve a rumbling bass line.  The technician did a good job of masking her impatience with my request.  At first she said that the playlist was already chosen for the day and that she couldn't choose another kind of song.  I explained again, what the problem was--the rumbling bass, the sub-woofer--was giving Awesome auras--simple partial seizures--and that I was afraid it was going to spark a convulsive seizure.  The technician said that even if she could change the type of music, that the new sub-woofer was on with all the different types of songs.  It couldn't be turned off.  There would be a rumbling bass line with whatever kind of music she played. 

And so there we were, in a bit of a stand-off.  I honestly didn't know what to do.  I started to retreat to rethink our options and be disturbed by the situation we found ourselves in.  But then, when I was about 10 feet away from her, the technician turned to me and said that the only solution she could offer was to turn the music off altogether.  Did I want that?

The question hung in the air like an accusation.  Like something hideous or obscene.  And every fiber in my Midwestern body wanted to say, "No, of course, I don't want that."  To give up and give in.

There it was--me, the non-wave maker about to change the environment for 30 people throughout the building.  I was very uncomfortable.  But then I glanced over at Awesome, struggling, and imagined the convulsive seizure that would result if I said, "No, of course, not." And so, forced into a corner, forced to choose between changing the environment of 30 people who would likely think I was a jerk because they didn't understand anything about my daughter's legitimate special needs, and doing what was needed to help my daughter, I chose my daughter.  And the truth is, no matter how many times I was forced to choose,  I'd choose my daughter every time.  No matter the scorn, no matter the irritation or anger at me, no matter the ignorance of those involved, and no matter whatever.  I would choose to help my daughter.  And choose her over and over again.  From here to eternity and back again.

And so, I said, "Yes, please turn the music off.  My daughter is struggling with an aura.  The music is causing seizures."

And so, a moment later the rumbling bass was gone.   And with it all the music. There was the sound of silence.

And people began looking up.  Asking what happened to the music.  And I saw the orthodontist asked the keeper of the music..

Body language.  The knowing look.  The subtle or not so subtle eye roll.  The skeptical half smile.  The dismissive slight shake of the head.  They rippled around the room like a breeze blowing through, ruffling feathers.  Irritation.  Scorn.  Skepticism.  Judgment.  Lack of understanding.  Lack of wanting to try to understand.  Not wanting to exchange the normal for the helpful to my daughter.  All of this as subtle as the ruffle of a feather, the rustling of a leaf....but all there unquestionably.

The Midwestern farm girl bobbed to the surface for a moment, before the resolute mama bear cuffed her and sent her back below the surface.  It was too late to fix anything for the Midwestern farm girl.  She would have to live with the transgression.  To wrap herself in the certainty of the necessity of the transgression.  Because life is like that.  You have to do what you have to do sometimes, like it or not.  A thousand sacrifices.  And thousand surrenders.  A thousand laying downs of one thing on the altar of your life in order to facilitate something for someone. In love.  Life is full of a thousand little dyings in love for our loved ones.  And a thousand little risings from the dead in hope and anticipation.  And in love.  I had chosen my daughter.  I had rocked the boat to keep the boat from capsizing with her in it.

The boat-rocking worked.

A minute later Awesome put her phone away.  The auras had stopped with the rumbling bass.  And the technician who was to work on my daughter asked her if she was ready.  Awesome slipped her dark sunglasses on, the technician tilted the chair way back so that Awesome's beautiful face was looking upward at the ceiling, and in the relieving silence the two started to discuss what colors Awesome wanted for the clips and rubber bands on her braces.

Awesome did not have a convulsive seizure.  We did not have to leave without getting her orthodontic work done.  Awesome got her braces tightened.  And after much debate and indecision. she chose black and blue colored clips and rubber bands for her teeth.  Black and blue was exactly appropriate for how this afternoon felt.  Bruised and broken. 

Was it my imagination?  The orthodontist was less friendly than usual.  Perfunctory would be a good word for it.  Only it wasn't a good word or a good feeling.  In a situation like this, one has a choice.  To rise above and be gracious, to put at ease.  Or to be otherwise, to show disapproval without saying a disapproving word.  To punish without punishing.  To communicate by not communicating.  To let the silence warn of the price of a similar action in the future.  The message is both given and received very clearly.  Only an idiot wouldn't get the message.  And I'm no idiot.  On the other hand, when message is given so subtly, there is always the possibility that no message was ever intended.  That none was, in fact, given.  That it was all in my imagination.  But isn't that some of the beauty of messages like that?  Or the absence of messages like that?  Unless you reassure, the intended will never know for sure which it was.

The technician, to her credit, tried hard to be friendly and smooth things over and make us feel less of the tension that we'd created by altering the environment for everyone.  But I was already feeling traumatized and thinking about how hard epilepsy is.  About the price epilepsy exacts constantly from my daughter.  And from me, her mother.  And about the fact that there is a disparity in willingness and graciousness to accommodate based on the popularity of the condition that a child has.  It's a disparity (from"dis"---meaning lack of , and"parity"-- the state or condition of being equal, especially in status) based on cultural understanding.  Sympathy and understanding is based on the success or failure of "awareness" in our society, for that particular condition. 

If my daughter had been a child with autism who had sensory issues, the office staff would have understood my request.  If she had been developmentally delayed and had simply been bothered in an innocent way by the sub-woofer, they'd likely have kindly acquiesced.  But somehow, because my child looks normal, acts normal, seems normal, and pretty much is normal (except for the fact that she has seizures) and-because the character and severity of her chronic condition is hidden from sight, then somehow, by asking for accommodation to avoid difficulty and/or disaster, we have been guilty of transgressing some unspoken rule of civility.  We are assumed to be selfishly insisting on our individual preferences, rather than dealing with medical necessity.  When the illness is not on the culturally cool and current list, then it assumes the status of something like an imaginary illness.  Not quite real.  And because it's not quite real, it must therefore follow that it's something over which the person can choose to have control.  And asking for an accommodation for a not-quite-real condition over which someone could choose to have control, is something that kind, considerate people would choose to not do, especially while in a group of people who'd prefer to have things stay just the way they're used to it being.  None of this reasoning is conscious reasoning.  Rather, it's all subconscious.  Reasoning of which we're not aware until we are honest with ourselves.  And when I'm not the one in the hotseat, I'm just as guilty as the next person.  It's because our default is naturally non-accommodating.  We expect others to accommodate themselves to the group.  Rather than the group to the individual.  And when the individual dares to make a request to the group for accommodation, it needs to be only in certain pre-approved, societal-understood circumstances, easily recognized.  And epilepsy-related difficulties are not in that group of pre-approved, societal-understood conditions.

At any rate, that afternoon, sitting there contemplating all this made me very sad.  And traumatized.  And more than anything else, just very, very tired.  Because epilepsy wears you down.  Constantly.  Always being on guard every moment.  And whatever energy you have left is then spent on making up for the fact that everything is harder because society doesn't recognize anything about your child's with epilepsy's struggles.  Or your struggles as caregiver to a loved one with epilepsy.

By the time Awesome was done, I could not wait to get out of the orthodontist's office.  I had a headache and was exhausted.  And Awesome too was exhausted from dealing with all those auras.  And the tension she felt around her.  We were both traumatized and simply wanted to go straight home to the shelter of our own house.  The shelter of not having to rely on others in a shared environment where her struggles were not recognized and accommodated without a fight.

As we moved to the appointment desk, the technician switched the music back on.   I tried to imagine that the vibrating bass wasn't as bad as it was.  But it was that bad.  I glanced over to see that Awesome was frantically getting into her Zen app on her phone.  Trying to change her brain into calming mode.   I didn't even attempt to engage in the small talk the appointment clerk tried to make.  The appointment clerk's words fell flat without response.  Even the Midwestern farm girl part of me didn't give a care at all.  I was too exhausted and demoralized to care.  I felt that we were fleeing before an army, before a flood, before the tyranny of the normal.

We'd love to do normal.  But we can't.  We want to live normal.  But we can't.  We don't want to ruin normal for others, but we can't always succeed in not doing that.  In fact, sometimes it's a trade-off--we can ruin your normal in this way or that way.  We can ruin your normal by requesting that you turn off the thing that is triggering auras in my daughter.  Or you can let the fruits of your lack of belief obliterate the normal in a far less pleasant way.

You see, there is an antidote to disbelief--to the lack of belief in the reality of what my daughter needs (relief from a seizure trigger) and to the disbelief that my daughter has a hidden disability that is serious enough to be worth altering our shared environment.  And that antidote is experiencing one of Awesome's seizures.   Watching a convulsive seizure is usually traumatizing enough for all concerned that whatever previous tendency to minimize her epilepsy's reality or to want to cheat on keeping the triggers at bay, is immediately gone.  Watching Awesome's convulsive seizures--for the uninitiated--is like watching a tornado strike.  No one who's been there to see one leaves without having some degree of PTSD.  And it can take days to get over the experience. A friend once told me that it took her two days of meditation to begin to get over being witness to one of Awesome's big seizures. But the real problem is the antidote to disbelief is very costly.  To Awesome--as the one whose body and brain have to absorb the assault that is a convulsive seizure, and to me--Awesome's parent, who must not only administer first aid and worry over my child, but also worry about negotiating the social situation--the disruption, the fear, the over-reactions, and the utter shock that usually results.  It's also costly to the normal things that should be going on around her.  And to everyone nearby--including you.   Believe me, the inconvenience of 15 minutes of silence--or figuring out how to turn off the sub-woofer and still have music--is infinitely better than the trauma of watching a convulsive seizure.

But does it really need to come to that?

Apparently so.

POST SCRIPT:

We called and asked to speak to the orthodontists's office manager a few days before Awesome's next appointment.  We explained the situation in detail.  The office manager was understanding, concerned, and very gracious.  She apologized, assured us that they wanted to be helpful, and that it was unacceptable for the office to be playing music that caused Awesome to have seizures.  She called us back a few hours later.  She confirmed that the sub-woofer couldn't be turned off.  However, she said they were committed to making sure the music didn't cause Awesome any issues.  They would select playlist with a lighter, less driving baseline to make the sub-woofer less problematic.  They would also turn the volume down to keep the sub-woofer toned down.  They hoped that these things would eliminate the problem.  However, if it didn't, she told us that we should tell the receptionist or herself immediately--and they would turn the music off. 

When the day of the appointment arrived, I have to admit I was nervous.  We waited in the car until the exact time of the appointment.  When we walked in, it was clear that the office staff knew exactly what was going on with Awesome and that they were bending over backwards to make us feel welcome and at ease.  The receptionist made light conversation.  We didn't have to wait at all for the appointment, and Awesome's own technician was free this time--she came to get us right away.  The technician asked if the music was OK.  It was.  They were playing Motown, and the volume was lower than usual.  It was fine.  Barely had the technician started with Awesome before the office manager came out to talk to me and to apologize again and make sure everything was OK this time.  She was very genuinely warm and kind.   She reiterated that they wanted to hear immediately about any problems then or in future visits.   They wanted Awesome to be able to get orthodontic care without it setting off seizures.  Awesome's appointment went very quickly and well.  She picked the colors for her braces, this time black and gold.  The orthodontist joked around with her; he was appropriately friendly with me as well.   Things felt all back to normal.  Awesome didn't have a single aura (simple partial seizure) during the time we were at the office.

Awesome and I both left the office feeling relieved.   Would that all stories of this sort had such a happy ending!