Take THAT, Epilepsy: The who, what, when, where and why of seizures

Matty - waiting his turn
for monthly bloodwork to
make sure his seizure medication
is working properly.  

Epilepsy wears a poker face. 

Epilepsy wants to keep me in the dark. 

I already know Who (Matthew) and What (Seizures).  It’s The When, The Where and The Why that I am desperate to discover. 

I somewhat know The Why.  Approximately 1/3 of people who have autism also have epilepsy, according to Autism Speaks.

But The When and The Where. 

I need to know.

When will he have his next seizure?

Where will he be?

The further we move from the last seizure - the more days, weeks, and months that pass; the more I believe we are in the clear.  The distance from the last seizure strengthens my hope that the seizures are not coming back, that they are finished and part of the past.

I lean on this irrational confidence as I explain to my babysitters before leaving the house, “he has to take this medication with his dinner.  It’s for seizures, but he hasn’t had one in years, so don’t worry.  He won’t have a seizure while you are here.”  I don’t even show them what to do if a seizure happens because my phony confidence has told me I don’t have to.

Epilepsy’s absence has tricked me into believing that it won’t come back. 

That we have found the right medication. 

That we can close the door on epilepsy.

Wrong.  Epilepsy pushed the door wide open this weekend.  Again.

Two days ago, Matthew experienced a grand mal seizure.  This was after 14 months of remaining seizure free.  Feigning my own bravery and calm, I put on my poker face as I helplessly watched his body shake uncontrollably as he lost consciousness, and heard the odd guttural sounds coming from his throat. Greg’s body was on auto-pilot as he gently positioned Matty safely on his side, his face two inches from Matty’s face, both of us just waiting for it to be over.  We have been through this dozens of times before, but each seizure shakes me to my core. 

I want to scream at Epilepsy, “LEAVE HIM ALONE!”

About an hour after the seizure,
he's still resting - this photo was
taken to text to my family to
show them he was OK.

But Epilepsy puts me in my place. “I can come and go whenever and wherever I please,” Epilepsy declares.

I have never experienced an earthquake, but I can imagine that people who live in areas prone to earthquakes have to tell themselves they will be OK when one hits. There are no warning signs, earthquakes just happen.  Some are massive, life changing, damaging, and frightening; while others are minor, and barely felt.

It’s a protective way of thinking. A defense mechanism. If I convince myself that he has outgrown seizures, or that the medication he is taking will protect him from having another one, then we can go on living without fear.  But really, the next seizure, like the next earthquake, is always lurking.

There are many things in life that we simply cannot know.  
The Where and the When of seizures are two of these unknowns. 

Our children are our teachers.  

Matthew is teaching me that I can’t live my life in fear of anticipating the next seizure, the next earthquake of our lives.  He is teaching me that it’s necessary to have hope.  That I can’t live in the land of “What If” because this fear-based thinking will lead me to a life full of limitations.

My three favorite “A words” are what help me the most here.  I learned these words in a yoga class many years ago taught by a deeply gifted teacher (and friend), Kristina. These words help me remember how to refocus any lurking fears. 

Accept that I have no control over epilepsy.  I cannot know Where or When the next seizure will happen.

Allow myself time to process what has happened after each seizure.  Time to continue researching the best treatment options and medications for Matty.

He bounces back the next day!

Appreciate that we have found a medication that works about 95% of the time.  That we have great doctors and medical professionals helping us.  That our family and friends are eager to support us any time of day or night.  That Matthew bounces back the day after a seizure.  That Matthew has so many lessons to teach me about life.

Take that, epilepsy – you can’t leave me in the dark.  I know too much.   I have a great teacher. 

That's my teacher!

Amy McCoy is the author of the children's novel, Little Big Sister , a realistic fiction account of what life is like for a sibling growing up with an older brother who has autism.