Dating... with Epilepsy: Alexandra & Johnathon

Alexandra & Johnathon

Introduction

"Hello, my name is Alexandra Rouzier. I am 22 years old and I am as mixed as they come. My father is Swiss/German and my mother is Haitian. I feel the need to say this because most people think I am some type of Spanish. My hobbies include fashion, art, music, blogging, and any other creative outlet. You can check out my blog, FashionHankyPanky.Wordpress.com, by clicking HERE. Also, I just recently moved to New York to pursue my dreams of having a career in the fashion industry."

When did you have your first seizure, and what do you remember about it? 

"I remember having my first seizure when I was about 10 years old. It was after a really severe car accident I had with my mother. Til' this day doctors cannot tell me for sure if it was the accident that "caused" it. When I am sure it was. The seizures started weeks after."

When were you first technically diagnosed with Epilepsy, and what kind of seizures/Epilepsy do you have? 

"I was diagnosed with Epilepsy when I was 11 years old on July 1, 2001. I was first diagnosed with Tonic Clonic seizures, then Grand Mal, then Generalized Seizure Disorder. This was when they told me and my mother lets start watching her under EEG'S, MRI'S, and CAT SCANS, because they could not pinpoint where the seizures were coming from."

Describe the seizures you usually have.

"I usually have Grand Mal and Petit Mal seizures. The thing is when I have a seizure it is always Grand Mal and I always end up hurting myself in one way or another."

May I ask what medications you are currently taking?

"For a few years now I have been taking Keppra and Zonagran. Of Keppra I take 1500 mg twice daily and of the Zonagran I take 100 mg twice daily."

Do you find that there are specific things that bring on your seizures, or are they completely unexpected?

"Definitely sleep! When I do not get enough sleep, I feel very strange and feel as though I am going to have a seizure. It is just that feeling of vertigo at times. I occasionally have seizures due to lack of sleep. I just hate that feeling you get before hand."

What was your most embarrassing seizure?

"My most embarrassing seizure was when I was around 13 or 14 years old. I was taking a shower at my grandpas house and BOOM! I had a seizure in the shower. I fell so hard I broke the soap dish. He had to carry me out I guess, because when I woke up I was in the bedroom with a towel on. The embarrassing part of this was that my grandfather saw me naked. For a 14 year old this was dreadful."

Do you do any volunteer or advocacy work for Epilepsy? 

"I did a fashion show for the Epilepsy Foundation of Florida on March 10, 2012 where everything was purple themed. I brought the Idea to them and they loved it. I figured I really don't know how to give back, but I know what I love and that is fashion. I created this show from start to finish from getting sponsors, designers, models, location,etc...with the help from The Fashion Honors Group at The Art Institute of Fort Lauderdale. We featured designs by Elease Donovan Swimwear, Mitchell Perry, and Anna Topf, just to name a few. We raised around $1,800.00. I would like to do shows like this all around the US raising awareness and money for this condition and the foundation. Here are some images from the fashion show. All the swimsuits are by Elease Donovan Swimwear."

Do you feel that it is important for people to speak up as advocates and volunteers for Epilepsy?

"It is important to speak up and speak out about this condition. Many people have Epilepsy but there are no role models to look to like there are for breast cancer. It is extremely disappointing. We should have more people like Mandy Krzywonski for young girls to look up to."

(Thank you so much, Alexandra!!! You are just as amazing and we need more people like YOU!)

Now tell us a little about your significant other, Johnathon.

"His name is Johnathon, and he is amazing. This is kind of embarrassing, but we met on a iPhone app. He was the only one on the app that actually wanted to start a conversation and see how the other person was doing. Jonathan is caring, sweet, understanding, and best of all doesn't judge me when I am at my worst or other judge people."

How did you tell him that you had Epilepsy, and were you scared?

"With past relationships I was hesitant to tell the other person I had Epilepsy so I always waited until I was 1 year into it. I always assumed that if they get to know me for awhile, they would find out that I have epilepsy it won't bother them as much because I am so amazing. (Mandy's Note: I LOVE YOUR CONFIDENCE! YOU GO GIRL!) I told him I had Epilepsy on our second date. I just came out and said it. I was petrified he would just walk away."

How did Johnathon take the news?

"You can say he was my guinea pig and the results were amazing. He didn't walk away. He acted like I wanted to go to the mall. He just said "Okay!" and continued our conversation about where we were going to eat that night."

Do you feel that it is important to tell someone you're dating that you have Epilepsy early on?

"It is important to tell your significant other early on. I say within 3 months. In my case all my experiences have been positive. Say they weren't, I would not want to waste a year of my life with a person and finally tell them I had Epilepsy, then for some reason they didn't want to deal with me anymore. That is not the way to works. Put yourself first!"

How has Johnathon helped you through your struggle with Epilepsy?

"He has helped me tremendously. He has tried to understand my struggle and pain. Most of all he has helped me by driving me everywhere and not rubbing it in my face. I always feel like a burden because I cannot drive yet. Well, I can drive... Just not legally. Shhhh!.... Just don't tell anyone!"

"Does your Epilepsy or seizures ever bother Johnathon?

"It only worries Jonathan when he is there when it happens. He is afraid for my safety. It bothers him when I have to deal with Insurance companies and Hospitals that give me the runaround. For example, yesterday I refilled my medication. When I go to pick it up, my insurance company says that I now have to pay $625.00 out of pocket because the price of the medication has went up and my insurance is no longer active."

Do you ever get upset that you have Epilepsy?

"I do get upset at times. Especially when it comes to hospitals and insurance companies."

What does Johnathon think when you are upset about these things? Does he dislike it?

"Jonathan feels I am entitled to be upset. I didn't ask for it, choose it, or want it. He knows it frustrates me especially when I have to rely on other people. It breaks me down on the inside but I keep this hard shell so nobody sees that."

In past relationships, were your exes accepting of your Epilepsy?

"All of my exes were accepting of my Epilepsy even when it was at it's worse in high school. They were understanding and wanted to learn more about it and help me in any way they could. One ex told me it almost made me more human to know I have problems just like everyone else."

Do your seizures ever have a negative impact on your relationship?

"It doesn't have a negative impact because neither of us make it a "THING." Both of us know I have Epilepsy and that's it!"

Do your seizures have a positive impact on your relationship?

"It does have a positive impact on our relationship. It makes us closer. It makes Jonathan "think about me more" (his words). It makes him more aware of my needs."

Has Johnathon ever had to take care of you in time of a seizure? What was it like?

(In Jonathan's Words) "It was frightening the first time I saw her in that state. I just wanted it to stop. I knew it strained her body and that she generally bit her tongue. There was nothing I could do about it. I just had to make sure she didn't hit her head and let her ride it out. After they stopped, I would talk to her to see if she was ok. I would just try and get her back from her foggy frame of mind.""

If you could give advice to any gals like you who are nervous to break the news of their illness to their significant other, what would it be?

"Please don't be. If someone is not understanding of our condition...screw them! Be honest with them and explain what you go through. If they dump you because of something you cannot control then they do not deserve to be in your company and you are better off without that person anyway."

If you could give any advice to a struggling couple in which someone has Epilepsy, what would it be? 

"Things may look dim now, but they will get better. This will only make you stronger and bring you closer. There are many couples who will never have a bond like yours. Accept it, embrace it, hold on to it. It may not look like it now, but this is your gift."

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