Order your Copy of
Being SARA

By: Chris Passudetti
Published By: Scobre Press
Available: September 2009

My biography 'Being Sara' is now available for purchaseI. I have permission from the Publisher, Scobre Press,  and the author, Chris Passudetti to share a chapter with all who continue to visit Itsnotwhoiam.com. I have read the book and I can tell you, you’re all going to LOVE IT!!!

Below is a early chapter in the book I choose to share with everyone because I felt it was important that people understand what epilepsy is before they know my story. I feel Chris did an excellent and creative job in describing what it is like to have a seizure. In this chapter he set the tone for the rest of my story.

So until the entire story is available, please enjoy the following chapter...

“What is Epilepsy?”

“Hi, my name is Sara-Elizabeth and I am 13 years old.  I have epilepsy, but am currently seizure free and off all medications.”  This is how Sara introduces herself on the website she set up for herself.  You’d never be able to tell just by looking at her or hearing about her movie audition, but she has had to overcome a very serious neurological disorder to get where she is.

Though Sara hasn’t had a seizure in several years, and took a big step toward realizing her red carpet dreams there was a time when her life was more like an edge-of-your-seat thriller than a lighthearted mystery.   And like any good thriller, Sara’s life started out perfectly normally.  Just like her two older sisters, Sara was a regular kid and spent the first year of her life like most children do, eating sleeping, crying, being amazed by her own feet and anything shiny.  It was a pretty quiet first year, but as the first guy to get killed in those really lame and predictable thriller movies always says, it was almost “too quiet”.

Sara and her two sisters were playing happily together one summer afternoon in 1996 when their mom turned her head at just the wrong moment.  Looking back as the sound of the girls playing hushed for a second, she watched Sara’s eyes roll back in her head and saw her slump awkwardly backward like she had just passed out.  Just sixteen months old, Sara lay unresponsive for about twenty seconds.  She was disoriented when she came to and crying a little bit, but seemed OK otherwise.

“I did a double take.  I wasn’t sure if she had held her breath and made herself pass out, or what happened,” Sara’s mom thought in those confused moments immediately afterward.  Although familiar with epilepsy, it was the furthest thought from her mind at that moment.

Epilepsy is a neurological disorder that causes the people who have it to experience recurring and sometimes uncontrollable seizures.  People with this illness do not look or act any differently from anyone else and most of the time they feel perfectly normal.  The problem comes during those times when the signals in their brains get all mixed up and they have a seizure.  Your brain is like the director of a movie, responsible for every single thing that goes on up on the screen.  Your body responds to a complex series of commands sent out from your brain and usually the messages get through just fine, loud and clear.  Your brain controls everything from coordinating your hands and feet so you can dribble a basketball down the court to knock down that three pointer at the buzzer, right down to the most basic things like your heartbeat and breathing.  When everything is working like it should, your brain keeps everything in order and communicates with the various parts of your body without any interruptions.  For some people, though, it’s just not this simple.

Imagine you are out on the basketball court with your teammates and your coach starts calling out the play she wants you to run.  Usually coach barks out the play, you and your teammates listen and then start running the play just like it was drawn up in practice, everyone working together to get the ball in the basket.  When done right, it’s a beautiful thing, the various parts of the team working together as one and it’s all orchestrated by clear communication between the coach and the team.  Your brain and body work very much the same way.

Imagine though, that instead of hearing the play called in clearly from the coach and knowing exactly what she wants you to do, it sounds like she is yelling with her lips hot glued together or a mouth full of crackers and cement.  And to make things even more difficult, she has also decided to try calling out the plays in a foreign language that none of your teammates understand.  What would that look like?  Can you imagine the train wreck that would cause on the court?

You would have people running into each other, guys getting tangled in the net, nobody going where they are supposed to go, people traveling, double dribbling and the ball getting tossed aimlessly from person to person without any thought of scoring.  Chaos.  A team can’t run like that for very long without falling apart altogether.  A seizure in a person’s body is a lot like this kind of miscommunication on a basketball court.

In people with epilepsy, sometimes the electrical signals that their brains send out get all mixed up and don’t get communicated effectively to their bodies.  As a result, you end up with the same chaos and confusion you get if the coach’s instructions didn’t get through correctly.  But instead of a basketball court, imagine all this going on inside your body.  Your brain is calling out instructions, and your body has no idea what the messages mean.  Without being sure exactly what message your brain is sending to it, your body gets confused and this is what happens during a seizure.

What makes this disorder so tough to deal with, is that a seizure can come on at any moment.  Whether she is practicing her mad xylophone skills or working up a sweat in a mean game of backgammon, the closest she likes to get to exerting physical energy, the possibility of a seizure and completely losing control of her body is always there.  As a result, some epileptic people try to keep their disorder hidden and never put themselves in a situation where a seizure could possibly be seen by others.  The uncertainty of it is terrifying.

Though some people are embarrassed about having this disorder, there are many others who are perfectly open about it.  While Sara is likely to be the only movie star to consider backgammon a sport, she won’t be the only one to have epilepsy.  She will join the ranks of other Hollywood actors who have epilepsy like Danny Glover, most famous for his roles in the Lethal Weapon movies, as Mel Gibson’s sidekick.  Diagnosed as a teenager, Glover suffered from seizures into his young adulthood, but they have since subsided and he is currently seizure free.

Unlike Danny Glover, though, actor Hugo Weaving’s seizures continue to plague him.  Although his name may not be as familiar as Glover’s, Weaving’s roles as Agent Smith in the Matrix movies and Elrond the half elf ruler of Rivendell in The Lord of the Rings trilogy make his work as recognizable as anyone’s.  Weaving had his first seizure at thirteen and has been on medication to control them ever since.  Still, the threat of seizures is so great for him that he does not drive, afraid of losing control of a car if a seizure were to come on while he was behind the wheel.  Even a mild seizure like Sara’s first one could have terrible consequences on the road.

There are many other kinds of seizures, though, each with a variety of signs and symptoms.  They may be as simple as the person’s eyes rolling back in her head and losing consciousness for a few seconds, like Sara’s first one.  In some seizures, the person doesn’t even lose consciousness and it may just look like a daydream.  Seizures like this involve only a small part of the brain.  However, when the signals get mixed up really badly and the whole brain is involved, a seizure can get pretty mean.

The worst kind of seizure is called a generalized tonic clonic seizure and this is the kind that most people think of when they think of seizures.  Someone having a seizure like this will lose consciousness and fall to the ground.  The body’s muscles tense up at first and become rigid, followed by a period of very fast and violent muscle contractions that make the person’s entire body shake and jerk uncontrollably.  These seizures can last anywhere from a few seconds to several minutes.  When the seizure is complete, it takes some time for the person to recover completely, usually with no memory of anything out of the ordinary happening.

Most of the time, tonic clonic seizures will resolve on their own, but in some severe cases the person may even stop breathing and sometimes seizures like this will come one right on top of the other with no recovery time in between.  This is when an ambulance needs to be called and medical attention is necessary.  Without help, someone having these constant seizures is in some pretty serious danger.

For a person with epilepsy, seizures can come on at any moment, often with little or no warning.  Because of all the violent movements during a tonic clonic seizure, serious injuries sometimes happen.  People can break limbs if they have a seizure in an enclosed space or even bite their tongues really badly from the violent clenching of their jaw muscles.  However, the common myth that you need to stuff something into seizing peoples’ mouths to prevent them from swallowing their tongues, is completely false and can actually end up choking the person or breaking teeth.

After Sara’s first seizure that summer afternoon, her mom called the doctor to see what he thought happened.  He told her it was most likely an isolated incident that they would never see again.  Single isolated seizures in young children are not always cause for concern and since it was so mild, Sara’s parents and her doctor weren’t even sure that it was definitely a seizure.  However, when nearly the same exact thing happened again almost a month later, there was no more denying it.  Sara’s parents got back on the phone with the doctor right away and he suggested a series of tests to see what was going on.

To be continued…