~ Epilepsy Awareness Day - Purple Day ~

"It is estimated that 1 in 100 people worldwide have epilepsy.  In 50% of cases, the cause is unknown."

I remember the first time it happened.

Well, not the first time it HAPPENED, but the first time I saw it.  Adorable little nerdy kid, super shy.  He sat across from me in AP Psychology.  His name was Paul.  Face full of acne like the rest of us, socially awkward like the rest of us, and incredibly intelligent like the rest of us.

But I heard that... noise... come from him.  Almost like an "Uh..." like he didn't remember what he was in the middle of saying to me.  But then his eyes went strange and his body started to twitch and shake, and before any of us knew it he was on the ground, shaking violently.  Half of the class knew what was going on, and half had no idea... including my teacher.  Bless his heart, he knew generally... I mean, most people know GENERALLY.

But the moment he tried to stabilize Paul's head while he was seizing, I had to tell him - and by tell him I mean yell at him, "Don't touch him.  Just move the table and chairs away... and someone give me a sweatshirt."

I folded it and laid it under Paul's head so he wouldn't beat himself to death on the concrete masked by the thinnest layer of carpeting I had ever seen.  Then again, schools aren't made epilepsy-proof.

It felt like the seizure lasted for years, with several in the class in tears, others ghostly pale and watching in horror, and others just backed away and silent. 

It was like a train wreck that no one could stop watching.  And then it was over.  Then we could touch him.

I put Paul on his side in some sloppy version of the recovery position that I wouldn't be formally taught until several years later when I was in my 20's, mostly just to make sure he didn't aspirate if he got sick.  Admidst our teacher shouting, trying to get Paul to wake up, I stayed there, quietly, and waited.

There's nothing you can really do but wait.  

Well, wait, and call his dad, who happened to be a teacher on the other end of the building.

By the time his dad came in, Paul was coming to.  He had no idea what had happened.  Only that he was on the floor.  "You had a sesizure, Paul..." myself and his father tried to explain to him.  According to his dad, it wasn't his first, so Paul would likely come to understand what happened after some rest, when he was fully back to himself.

With his dad on one side and our poor Psychology teacher on the other, they got him down to the nurse's office and our teacher came back and just kind of stared at me.

"It's in my family... sort of.  I hear about it almost every day."  I told him.

Epilepsy is a serious condition.  And as mentioned before, 50% of the time you DON'T KNOW your trigger.  Can you imagine that?

Like... "Oh, p.s. You have a serious neurological condition which can cause you to have violent seizures that can potentially cause other serious bodily injury... or perhaps even lead to sudden death... but we have no idea what causes that in you yet, so we can't tell you what to avoid."

I would wrap myself in bubble wrap and refuse to leave the house.

And even THEN, I still wouldn't be completely safe from a potential trigger.  I... cannot imagine.  I, at least, know most of my triggers.  Granted, I can't avoid them all the time, but at least I know them!

My family has a rare, neuro-degenerative disease.  By its longest form, they call it Progressive Myoclonus Epilepsy With Early Dementia.  Lately, they've given it a shorter name of 'FENIB', but for the life of me, I cannot tell you what FENIB is supposed to stand for.  That's for the researchers to explain, not for me.

Basically what this disease is... is some strange combination of Epilepsy, Alzheimer's, and Dementia.  Onset around age 25... and death by early to mid 40's.  It's... not a fun situation to be around.

I mean... can you imagine that when my cousins were in their mid-20's and had their first seizures... almost 20 years ago now... knowing what was in store for them that far in advance?  And what's worse... THEY knew what was in store for them.  And they had about 10-15 years that they still had the presence of mind to be able to dread it.  To be able to dread losing their identity, their memory, their communication.

Like... I don't even like waiting a week in anticipation of something, good or bad.  Let alone 10-15 years to dread the end of my quality of life.

This disease has begun to manifest itself in several forms within our family now.  In the beginning, with the minimal information that we had, it was either you have it or your don't.  Now... one of my cousins has a 'lesser form' of the disease in that she has epileptic seizures and some slight cognitive issues, but is not degenerating like her brothers and cousin.  I, myself, am only epileptic.  Any cognitive issues have been chalked up to my being on the autism spectrum... but who knows.  Maybe mild forms of autism are part of the disease too?

That's the biggest problem with something like this... at least 50% of the time, if not moreso, there is no definite right or wrong.

The thing of it is, we don't TALK about this stuff as much as we should.  And that's what Purple Day for Epilepsy, March 26th of every year, is meant to do.

Speak up... get people talking... educate yourself about Epilepsy and Epileptic people. And most importantly...

Learn how to act in case someone around you has a seizure!

• Stay calm. You freaking out isn't going to do anyone any good.
• Time the Seizure. This is to determine its severity.  Usually there is no need for a trip to the hospital unless the seizure lasts longer than five minutes, if there is more than one seizure in a row, if the person gets injured as a result of the seizure, if the person is pregnant, or if the person is diabetic.
• Remove any objects that may cause harm to the seizing person. They have zero control of their body or their mind in that moment, which means they don't have the presence of mind to see something dangerous and avoid it. If there are sharp or dangerous objects within their space, particularly things they can hit their head on or other flailing limbs, the objects need to be removed.
• Do not hold the person down or restrain their movement. It might be an instinct, to keep them from hurting themselves... but DON'T do it.  Simply keep the area safe for them until they stop seizing.
• Do not put anything in the person's mouth. One of the most common misconceptions about seizures is that you must put something in their mouth, otherwise they might swallow their tongue.  DO NOT PUT ANYTHING IN THE PERSON'S MOUTH. It is not possible for someone to swallow their tongue.
• Turn the person on his/her side after the seizure is done, to allow saliva and fluids to run out and keep the airway clear. If someone has too much fluid or saliva in their mouth and are laying on their back, there is a chance they could choke or aspirate, causing a whole other set of issues.
• Do not offer food or drink until the person is fully alert.
• Stay with the person until they are fully alert and thinking clearly.
• Reassure the person when consciousness returns.  They are likely afraid.  Most will not have memory of the actual seizure itself.  So imagine one moment you're having a conversation with a friend and the next moment you're on the floor with everyone staring at you.  Reassure them and be gentle with them as they begin to regain consciousness.

If any of you have any questions about my personal experiences with epilepsy, my experiences with my family, my experience with Paul I described earlier... feel free to comment your questions, or message me.  I don't mind talking about it.

For general information on seizures, Epilepsy, and Epilepsy Awareness, you can visit PurpleDay.Org's page on epilepsy information HERE.

❤ Samineh (Tiviyah Resident) aka: Big Sister Enigmatic