An ode to Jacqui

WE’RE BAAAAAAAAAAAACK!

It may not be Tuesday, but Julia and I decided to pull a switch-a-roo so I could have the honour of writing a post to mark this day of our very own Jacqui’s birth.

JQ, my baby duck, happiest of birthdays to you. I hope you have the best day possible today, regardless of responsibility and have to’s required of you today.

I’ve got to say, getting to be your big sister has been pretty kick ass so far, as I am sure it will continue to be. Getting to watch you grow over these past 26 years has been a wild, rewarding ride.

I mean, I got to know you from this point:

Her pants are SO inflated with fart.

Her pants are SO inflated with fart.

And watch you grow into this:

BAM! (she's still 12!)

BAM! (she’s still 12!) [Photo credit: Photography by Heather ]

I can’t believe you’re 26 though. I mean, it really does seem like yesterday that we were much shorter, standing in our country home, getting into whatever shenanigan we could to entertain ourselves…

I love that this picture exists

I love that this picture exists

And now we’re all grown up, trying to navigate all of life’s crazy adventures as they come…I hope it goes without saying, but I’m really grateful I’ve got you by my side through all of them.

I have loved watching you grow into your own person and become even more ‘you’ these past few years. You’ve inspired the hell out of me with your strength in your battle with epilepsy and conquering a shit ton of obstacles to celebrate two years seizure free this week. (Seriously, you KICK ASS)

Last year's one year anniversary tattoo

Last year’s one year anniversary tattoo

I admire your heart, your incredible wit and humor – I seriously still vote ‘stand up comedian’ needs to be added to your resume – and your need for peace making. You’re brave, smart and gorgeous from your heart out.

I hope 26 is incredible for you in every way – with more laughter, love and magic than you can hold. I know you’re already off to the best possible start.

Sisters ♥

Sisters ♥

HAPPY BIRTHDAY, dear Jacqui! We LOVE you!

~ Toni

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

Epilepsy awareness – Purple Day!

Happy Purple Day!

Did you know that 50 million people worldwide have epilepsy? I certainly did not and I am one of them!

This means that 1/100 people are battling their own brains. When you are epileptic, it’s very hard, or at least it is for me, to think anyone else is going through exactly what you are. This is because epilepsy is such an umbrella term – it means in one form or another you have seizures.

There are so many other things that people don’t know about epilepsy, so today I am going to let you into our little secret club, and tell you some things you probably didn’t know.

  • First I am going to start by telling you that the whole put-something-in-her-mouth-she-is-seizing is a myth. So, back away with that large eraser! There is absolutely no reason to do this. In fact you are probably going to cause more harm than good. I know your intentions are not to choke the poor person you are trying to help, but this only started because someone thought you could bite off your tongue and swallow it. You can’t…it’s attached.
  • Did you know that grapefruit can mess around with some seizure and heart medications? I didn’t, until one day while eating a deliciously tart and magical grapefruit, our occupational nurse at work walked by and told me that I shouldn’t be eating that. She was actually quite shocked that I had never been told that! It was too late – I had a seizure later that day. Oy! So I avoided them…until now. Now I eat them at my desk all messy and slurpy and I don’t care who sees or hears me because I missed them, oh how I missed them!
  • This one I thought was a little ridiculous, but I remember telling someone (names will not be mentioned) I was epileptic and they recoiled and asked me if I was contagious. Now at the time I was really dumbfounded and pissed off that someone could think epilepsy is contagious. You are absolutely right ma’am! If I sneeze on you, immediately you will start to convulse.

    However, now I know it is because people simply do not know, and by asking, I am educating them so they won’t look so silly next time. This myth came from back in the day when epileptics were kept in an asylum with patients with mental disorders. They were, of course, kept separate because they were considered contagious. Silly, silly, silly!

  • You can die from epilepsy. Death from a seizure is called SUDEP (Sudden Unexpected Death in Epilepsy). There is still so much more research that needs to be done, as researchers and neurologists just don’t know why people pass away from seizures, which is why they are so scary. Death can also be caused when multiple seizures occur, or when someone is having trouble coming out of a seizure. Other than giving it a Harry Potter name – status epilepticus – again they just don’t know why. SCARY!
  • Epilepsy can not be cured, but it can be managed! Managing it means figuring out what works for you. For me, in particular, my triggers were mostly environmental: not eating right, not taking care of myself, letting stress get to me, and being over-medicated. In every epileptic, seizures and triggers are TOTALLY unique; for one person hitting their elbow might be the trigger, for another it might be a stressful situation, but either way seizures often tend to look similar.
  • The weirdest place I have ever had a seizure is in my sister Julia’s van – so very uncomfortable, more uncomfortable than normal. BUT silver lining – the chairs reclined, and she has a video screen in the back which came in handy for distracting me from the pain and nausea that comes after a seizure.
  • Seizures never get easier to handle or to go through for anyone. You may become a pro, and expect what is coming next, but things can change in a moment’s notice. And let me tell you it never gets easier to see mascara tears from those who are taking care of you, as you go into one.
  • EVERYONE is born with a seizure threshold. Yes, even you. It just depends on how high or low it is whether or not your triggers will cause a seizure.

Now that I have thoroughly scarred you let me dazzle you! Purple Day was created by Cassidy Megan, a young girl who is fighting the battle that is epilepsy. She wanted to spread the word about it. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. She is an inspiration and even has her own blog.

For those of you who are reading this and who are epileptic – I would like to reach out to you! If you have questions, or just want someone to talk to, I know I was very scared and had questions that my doctor could’t answer. Like, how I am going to deal with everything ? How will my family cope?  I want you to know that I am here to lend an ear.

Happy Purple Day everyone!

~ Jacqui

Ed. Here’s a great infographic explaining seizure first aid. The best thing to do in case of a seizure is to stay calm, stay with the person, and support them when they are done seizing. 

First-Aid-for-Seizures3_Page_2