For Cassidy Megan

It has been a year a half since my last seizure – and I am still scared shitless.

Every time that someone tells me that I am out of the woods, after all it has been a year and a half there is nothing to worry about, I secretly want to kick them and yell “DON’T JINX IT!” or “HOW DO YOU KNOW? DO YOU HAVE A CRYSTAL BALL?” and if they do have a crystal ball, why the hell haven’t I used it before!? I am so scared that it will happen again. Every time that I get sick with a flu or cold, the first sign of the sniffles, I panic. When my heart goes wonky because of stress, I immediately call my mom to take me to the emergency room. Every time I decide to have a libation after a rough day at work, I sip it gingerly in hopes of not triggering the sleeping monster. Because after all, that is what it is, a sleeping monster. A monster who lies waiting for me to be living my life, and then BAM!

This past episode of Grey’s Anatomy hurt my heart. A woman got into a car accident (well, the car drove through their house and hit her and her husband). She was pregnant and talking and fine and then all of a sudden she had a seizure and she was gone. She was gone and they delivered the baby. She was gone and the baby lived on while the father had some intense surgery. I fell apart while Cody slept soundly beside me. I messaged Julia who is my Grey’s Buddy…and she talked me off the ledge. It’s not just Grey’s though – every time that a character has a seizure on any TV show I hold my breath and then burst into tears because IT’S SCARY! My mind starts racing! Is this what my family watched? Did they hold their breath?

I am scared we won’t be able to have babies. Like, really scared. I am scared I won’t be able to, or that I will hurt them. A woman once thought it was a good idea to tell me that a friend of hers had a bath with her two year old, and while they were bathing she had a seizure and drowned her baby. I can’t get that out of my head. My mind keeps racing. What if I do that? What if some HORRIBLE accident happened and then I would lose my baby and Cody and my family and it just snow balls. Seriously – my brain, if it’s not seizing, it’s freaking out thinking of all the horrible things.

I have a coping mechanism – I make fun of my seizures to make it easier for me. I laugh about it, and joke about it and make it seem like it’s okay, but it’s scary. I will talk about them with anyone. I will answer anyone’s questions. I am not scared to do that. I am scared that it will happen again.

I am scared. 

Today is Purple Day, which is celebrated around the world. It is a day to raise awareness about epilepsy. My co-workers at my office are going to be holding a fundraiser tomorrow for it which is AWESOME! There are no other words for it other than AWESOME!  Purple Day was created by Cassidy Megan, a young Canadian girl, in 2008. She was motivated by her own struggles with complex partial seizures. She wanted people to know more about it and dispel myths. Purple Day didn’t become international until 2009.

I am going to be wearing purple, and putting my own selfish fears aside to support those who are going through worse than me. For those who suffer every day, multiple times a day. For you, I hope you find the treatment that works, find your trigger and live a life free of seizures! I wear purple for you, and know that you are always in my thoughts and prayers!

Purple Day

Purple Day 2014

~ Jacqui

Doomsday preparer

I have marked a little milestone in my life as someone who has epilepsy – I have been seizure-free for 10 months now. TEN whole frickin’ months!

I am so happy and so scared all at the same time. Let me explain:

When you are diagnosed with anything, be it epilepsy or cancer, there is always a fear of the unknown. You can google, webMD and talk to as many doctors as you can until you are blue in the face, but there are no cookie-cutter symptoms.

I was lucky enough for my seizures that most of the time I could feel them coming, and since that feeling has left there is a pit in the bottom of my stomach looking, and waiting for it to come back.

Bad day at work? Where is that feeling?!

Out ’til the break of dawn with friends? Where is that feeling?

Stressed about family/friends/life? Where is that feeling?!

I am looking for it, I am waiting for it. A part of me wants it to come back just to get it over with! Like I am supposed to have one last hurrah!

When we go away, I still pack my emergency case: a heating pad for the aches that ensue afterwards, a security blanket/pillow for me to curl into, the medication that I worked so hard to get off of…just in case.

I have to be prepared, because the moment I am not is the moment it will come back. The moment that I taste that penny and my heart starts to race.

I count down the days and share my leaps with Cody, but I have never really uttered a word about how truly afraid I am that tomorrow will be the day that I have to restart the clock. It happens all the time.

It could be worse, I could still be having them as much and as often as I used to and I could still be medicated.

The future is a scary thing, especially when you are a doomsday preparer!

For now, I will still mark off the days in my calendar and plan my big 1-year celebration. But in the back of my head, I am still waiting for that penny to drop.

~ Jacqui