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

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Everyone remembers their first

I remember my first seizure like it was yesterday.

There are very few that stand out to me, mostly because I choose to forget them – they aren’t the warm fuzzy memories that mark a special occasion – but everyone remembers their first.

I was 17 and getting ready for prom. I had bought a gorgeous coral dress, which was a little too big, and my mom had picked myself and Andreah (Dee) up from school to get it hemmed. She took us to an apartment in a nearby city, which stood adjacent to a mall. Whose apartment it was I couldn’t tell you, but I do remember that my mom found the seamstress through someone at church. I remember that she had just had a baby. Before we went up the elevator to her floor, I remember telling my mom I was hungry, to which she promised to pick something up once we were done. I don’t think I was actually hungry, but I couldn’t put my finger on what I was feeling.

The seamstress had just finished placing the pins with precision in the fabric, making a map for herself later to follow, when she asked how I thought the dress looked… That’s when it happened…

I tasted copper, or like a penny was on the back of my tongue, everything got hot, I was falling, and I couldn’t grab anything.

Then pain, the worst pain I have ever felt in my life. I wish I could compare it to something else, but there is nothing I have ever felt before that could come close to it. The best I can do for you is a muscle spasm, but much more intense, and just as it came it was gone. My mom will tell you it was longer than what I felt – when I am having a seizure, tracking their length is the last thing on my mind.  I was tired and I wanted to do nothing more than to sleep, but the pain kept me in a state of between, as if I was awake, but still dreaming.

I felt hands, familiar hands, the hands of my mom who was now calmly telling Dee to call 911 as she was taking the dress off. I could feel the pins scratch against my skin and it was a comfort to feel something other than that pain.

“It’s okay I am here, I have you. It’s okay. Andreah you are going to need to tell them the apartment number and the floor. I am here, I have you.”

My eyes wouldn’t open…sleep, my body was telling me, just sleep.

“Andreah, grab her clothes and give them to me. You need to calm down, I have to take care of Jacqueline. She is going to be okay, just breathe and talk to the police.”

Then more hands, hands of someone I didn’t know, and my mom was giving the hands my information.

“She fainted and hit her head, she started to shake, I don’t know what happened, she was saying she was hungry, she is hypoglycemic.”

Warm air – I was outside – then a woman’s voice unfamiliar to me, “We are taking her to the hospital. You can meet us there.”

I was alone, blood was being taken from me, something was being pushed into my arm, another needle. Then dark and quiet.

I remember waking up in a wheelchair, I was in a waiting room, and Julia and Toni were there, and Ben… Oh, Ben. Andreah was sitting, staring at me. I looked up and saw Julia, I wanted to say hello, but I couldn’t find the words. Instead a classy stream of drool came out of my mouth, and tears from my eyes. I was so tired, and sore, then sleep came again.

I was in a bed being woken up by a nurse – if I had a concussion I wasn’t allowed to sleep (which is a stupid rule). Mom was still with me. Thank God – there would have been no way without her. My protector, fighting for me with nurses, and the doctors that I saw. Waiting for me through the numerous scans throughout the night. All the while holding it together.

Later, I was up and fully functional. The first one is always the hardest to get through, at least in my case. I took them like a champ after that! The doctor told me I had had a tonic-clonic or a grand mal seizure. He recommended we follow up with a neurologist as soon as possible, because they couldn’t see why I had had one. Thus started the battle that is epilepsy.

There have been so many seizures after that, and soon after my first grand mal seizure, I would come to find out I had had many more before it called complex partial seizures.

I don’t like talking about it, because I hate the look of sympathy in people’s eyes and I in no way have it worse than many other people with epilepsy. I have never had to have major surgery in order to improve my way of life. Yes, I have been yo-yo’d from medication to medication, but I found what works and now I am four months strong seizure-free with no medication.

I have the utmost empathy for those who live and fight epilepsy every day, constantly looking for a cure, medication, therapy, or treatment that will help them cope with their seizures. The brain is a tricky mistress and she is constantly changing and challenging us. I also know that a lot of us couldn’t do it without our amazing support systems, taking us to appointments, watching helplessly as we go through yet another one.

I am so lucky to have someone in every corner of my life who has been there for me during an “episode”. I have been babysat by my best friends when I was changing medication and couldn’t be alone, and held close by Cody while I was having yet another seizure in the middle of the night. My mom, who has driven from Waterloo in the middle of the night because I was having too many or getting calls midday from work, letting her know I had another one and she needs to come get me. Toni and Julia, who babysat me when Cody was away, especially Julia who has dropped everything to come pick me up from work so I can go home and sleep and she can watch me. Dee, who I first tortured, and who ever since has called me whenever I have one just to make sure I am okay.

And oh my goodness, my supervisors Terri and Andrea at work, who literally put in place a procedure to help me get through a seizure (some of my work family still have the procedure pinned to their desk areas, emergency numbers and all), especially Andrea who was designated my seizure buddy at work, who watched as I worked through one, and waited time and time again for me to wake up.  All the many mama bears (you know who you are) who waited until the bathroom was no longer “out of service” to know I was okay.

You all mean so much to me! There are no words…except these I have to share:

Before you can see the light, you have to deal with the darkness. - Dan Millman

Thanks for being my light. ❤

~ Jacqui

Ed. – For more information or to find out how to support epilepsy research, visit www.epilepsy.ca. Show your support for epilepsy research and people who live with epilepsy by wearing a purple ribbon on March 26, Purple DayWe LOVE you, Jacqui!

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