On The Threat of Tornadoes and Seizures

Seizures, meet tornadoes.  Tornadoes, seizures.  You  seem to have a lot in common.

Our state is in emergency mode today.  Nothing has happened yet.  It's the threat of something happening that has shut down most of the state.  The schools.  And many businesses as well.  As a state, we've ditched our weekday activities and are living in a state of worried anticipation.  Our Plan A day has been replaced by a Plan B day.   As one of the top states in the US for tornado hits, unfortunately we know this drill.  We're accustomed it.  But being accustomed to it doesn't make it any easier.  The truth is that it's hard to plan to do anything with the threat of a tornado hanging over your head.  You don't venture far from home.  If you do go out, you are watchful, ready, at a moment's notice, to ditch Plan B and switch into emergency survival mode.     If you stay at home, it's hard to get anything done because there's this nervous anticipation in the air.  Wherever you are, you are in hyper-vigilant mode.  You watch the skies, but even more, you watch your TV, your phone, and your area weatherman's updates....  You make sure your weather radio or weather radio app is working.  You listen for tornado sirens.

We've been well-trained by our weathermen.  And one in particular.  He's educated us as to tornado safety.  We know all the tornado-related words and phrases....  Long track.    Vortex.  Mesocyclone.  Skycam.  Spotters.  Wall cloud.  Hook Echo.  Center room, lowest floor of the house.  Respect the Polygon.  Course of Least Regret.    And the procedures too, especially one little phrase that causes us drop everything and simply go into survival mode: "Go to your place of safety."   We know what to do if we're out on the road.  What to do if we're at home.   We know NOT to rely on Storm Sirens to keep us safe.  But we know that we should always heed Storm Sirens--stop what we're doing, respect the polygon, and head to our place of safety.  We've been taught what stuff to have in our place of safety too: Weather Radio apps, bicycle helmets, hard soled shoes, blankets, and bull horns.

But we've also been well-trained by Mother Nature herself.  We've seen the photos of the destruction left behind by tornadoes.  And many of us know people who've been victims of tornadoes.  People who've  been injured or lost home and property; we know their stories.  And they are uncomfortably close to us.  Most of us know one or two or more families who've lost loved ones to tornadoes  And there are those days that we ourselves remember.  Days when fear was in the air.  When the very air itself seemed alive.  Like a living, breathing, being.  Malevolent.  Sinister.  All around us.  Playing with us.  When it spawned tornadoes that left paths of destruction a mile wide and many miles long.  Long track tornadoes, so called because they leave in their wake miles long tracks of destruction.  Houses and building demolished and lifted off their foundations.  Vehicles thrown into the air like toy cars.  Trees twisted into splinters.  The stuff of life reduced to great clouds of dust and debris scattering into the four winds.  Someone's treasured family photos--once in an album--end up, torn and battered, drifting down on someone else's lawn in another state.  When you live in close proximity--time and space wise--to such overwhelming displays of utter violence and destruction, you develop a certain kind of PTSD that serves to make you sit up and take notice when the weatherman forecasts a day of severe atmospheric instability that is likely to spawn serious tornadoes.  And while the likelihood is still small that you yourself will be caught up in a tornado and lose your house, your property, or your or your loved ones' lives, you know that it does happen.  Because you've seen it happen before.  To others nearby.  To friends.  To acquaintances.  To neighbors.  To those in your city, your county, and your state.  And so you take it all very seriously.  Because, as your weatherman says, it is always best to take the "course of least regret."

As we lived with this tornado threat today, I started thinking about how much living with the threat of tornadoes on severe weather days is like living with intractable seizures.

Our state family is has been in emergency mode today for the last couple of years.  Nothing Many seizures has have happened yet during that time.  It's the threat of something  not knowing when the next one is happening that has shut down most of the state  impacted us and lead to Awesome not being able to do many things she used to do.  The schools. Music lessons.  Choir.  Summer day camp.  Sleep overs. And many  businesses as well.  activities kids her age would have no trouble doing.  As a state family, we've ditched our weekday activities lost our ability to do many normal things and are living in a state of worried anticipation.  Our Plan A day daily life has been replaced by a Plan B day daily life.   As one of the top states in the US for tornado hits, a family dealing with Intractable Epilepsy, unfortunately, we know this drill now.  We're accustomed it.  But being accustomed to it doesn't make today this lifestyle any easier.  The truth is that it's hard to plan to do anything with the threat of a tornado seizure hanging over your head.  You don't venture far from home.  If you do go out, you are watchful, ready, at a moment's notice, to ditch your watchful Plan B and switch into emergency survival medical mode.     If When you stay are at home, it's hard to get anything done because there's this nervous anticipation in the air your child must be constantly supervised (though she's 12 years old).  Wherever you are, you are in hyper-vigilant mode.  You watch the skies your child, but even more, you watch your TV, your phone, your area weatherman's updates.  You make sure your weather radio or weather radio app daughter's seizure detection watch and her Empatica Embrace Alert app is are working.  You listen for tornado sirens her phone calling your phone to say that she "needs your help." (A euphemism for the fact that she's having a convulsive seizure.)  You also listen for odd sounds that signal a problem: the deep choking sound of a seizure in progress, any odd repetitive noise, the sound of something falling, or a muffled cry for help.

We've been well-trained by our weathermen.  And one in particular.  He's educated us as to tornado safety educated ourselves and been educated by fellow epilepsy parents.  We know all the terms; he's taught us tornado-related words and phrases--our own vocabulary of words and phrases.   Long track.  Status epilepticus.  Vortex. Focal dysplasia.  Mesocyclone. 3 Hertz Spike and Wave Pattern  Skycam. VEEG. Spotters. EMU  Wall cloud.  Aura.  Hook Echo. Interictal Epileptiform Discharge. Center room, lowest floor of the house.  AED trial.  Respect the Polygon. The Honeymoon Effect.  Course of Least Regret.  Emergency Rescue Meds.   And the procedures too, in little phrases that cause us to drop everything and simply go into survival emergency mode: "Go to your place of safety."  "Awesome's having a seizure!"  We know what to do if we're out on the road.  What to do if we're at home.   We know NOT to rely on Storm Sirens stay with her until the seizure's over to keep us her safe.  But we We know that we should always heed Storm Sirens follow seizure safety plans--stop what we're doing make sure she's in a safe place, respect the polygon, hold or cushion her head,  and head to our place of safety. turn her on her side, time the seizure, and if it doesn't end within 5 minutes, then use rescue medication or call 911.   We have been taught learned what stuff to have in our place of safety is essential in a seizure emergency too: NOAA Weather Radio, Weather Radio apps, having your phone (charged) on your person, bicycle helmets, emergency rescue medication, hard soled shoes, a finger oximeter, a blankets, and bull horns a barf bag, washcloth, and something to tie back hair.

But we've also been well-trained by Mother Nature experience with epilepsy herself itself.  We've seen the photos of known firsthand both the seizures and the destruction left behind caused by tornadoes them.  And many of us know people who've Because our loved ones have been the repeated victims of tornadoes seizures.  Who've They've been injured or and lost property hours, home days, and even loved ones the capacity to live normal lives to tornadoes seizures--we don't just know their these stories, we've lived them.  And they the reality of the threat of epilepsy related death are is often uncomfortably close to us.  Most of us know one or two or more many families who've lost loved ones to tornadoes Epilepsy--either through SUDEP (Unexplained Death in Epilepsy), from fatal injuries or accidents caused by seizures, or from complications caused by seizure treatments.   And there are those days periods of time that we ourselves remember regularly experience.  When the very air Epilepsy itself seemed seems alive.   Like a living, breathing, being predator stalking our child.  Days when the constant low level fear was in the air we live with heightens.  When the very air seizures itself seemed alive suddenly worsen or come out of nowhere and manifest in new ways that leave us shaken.  Like a Sometimes it seems like epilepsy is a living, breathing, being.  Malevolent.  Sinister.  All around us.  Always there.  Always watching.  Playing Finding new ways to mess with us.  We who live with the constant threat of epilepsy all have trauma memories of days When it Epilepsy spawned seizures that left paths of destruction a mile wide and many miles long us shaken to the core, watching our child, unconscious and seizing, being put into an ambulance, arriving at the ER, with us believing that this was good-bye.  Long track tornadoes status epilepticus seizures so called because they leave in their wake miles long tracks of destruction that had even the EMT's, ER doctors, and ER nurses that cared for our loved one looking worried.    Houses and building Seizures that left our sense of hope and safety demolished and lifted off their left us shaken to our foundations.  Vehicles Our child thrown bruised and battered into the air like toy cars from falling as a seizure overtook her.  Trees Our child  twisted found seizing into splinters on and among shards of broken glass as a seizure caused her to knock a glass to the floor, shattering it, and then to fall on top of it.  The stuff of life Seizures that have reduced your bright-eyed, gifted child to great clouds of dust and debris  to someone temporarily so impaired scattering into the four winds that she was, for several hours after regaining consciousness, unable to talk, unable to read, unable to walk, and unable even to recognize you as someone she knows. Someone's That Epilepsy could reduce a treasured beloved family photos once in an album, member to such a state end up torn and battered drifting down on someone's lawn in another state and threaten her life and its shining promise--all the things we want for her and she wants for herself--is terrifying.  When you live in close proximity--time and space wise--to such overwhelming displays of utter violence and destruction, with Epilepsy's violence and unpredictability long term, you develop a certain kind of PTSD that serves to make you sit up and take notice when the weatherman forecasts a day of severe atmospheric instability that is likely to spawn serious tornadoes of the serious nature of the chronic illness with which your child lives  And while the The likelihood is still fairly small high that you yourself your child will be caught up in a tornado continue to have uncontrolled seizures; and lose your house, your property, or you or your loved ones' lives this increases the likelihood of SUDEP (Sudden Death in Epilepsy) and though, strictly speaking, the likelihood is still very small, you know that it SUDEP does happen.  Because you've seen it happen before.  To others nearby whose children have epilepsy.  To friends of friends.  To acquaintances.  To neighbors.  To those in your city, your county, or your state online epilepsy support group.  And so you take it all very seriously.  Because, as your weatherman child's parent, says you know that it is always best to be hyper-vigilant, to be always searching for another way to control your child's seizures because take it is the "course of least regret."  Living with the threat of all this is daunting.

I think you get the idea...

Some may object to me comparing a tornado to a seizure.  Tornadoes are, after all, from all appearances, much more violent, dangerous, and destructive.  And claim more lives.  But are they and do they?  Is that really true?

In a particularly deadly year--like that of 2011--about 500 Americans died from tornadoes and tornado related injuries.

In an average year, 50,000 Americans die from seizures, Epilepsy, and Epilepsy-related injuries.

Seizures kill at a rate 90 times that of tornadoes.

Tornadoes are destructive.  They disrupt and destroy lives.  But so are seizures.  While the threat of tornadoes can shut down a whole state for a day a couple of times a year, the threat of seizures can shut down normal life every day for millions of families.  For years.

The monetary cost of tornadoes is high.  The annual cost in 2015--the most active year in awhile and so the highest cost ever--was estimated at about $10 billion.

The yearly monetary cost of Epilepsy is comparable, estimated to be about $12.5 billion.  Not just in a particularly bad year.  But year in and year out.  Every year.

For those out there who live in tornado threatened states, the next time your state goes into emergency mode and shuts down under a severe weather tornado threat, take note of the feeling and remember us who deal with fearful anticipation every day under the threat of seizures.  What is for you, one or two days a year, is for us, every day of the year.  Year in and year out.

As I said, tornadoes, meet seizures.  Seizures, tornadoes.  You do have a lot in common.