Married... with Epilepsy: Mark & Malorie - Part Two

By: Malorie 

Hello, Malorie. Introduce yourself and your husband! 

My name is Malorie, I'll be 25 in May, I'm a stay at home mom of an amazing 2 1/2 year little boy and I have Epilepsy. I have been having tonic clonic seizures since I was 13 years old.

The love of my life… Well, I actually met my husband in high school. I can't recall which year it was, since my memory is foggy with the medicine I take. But the funny thing is we hardly even talked back then! We knew each other because he was on the football team, and I was on the softball team - So if we saw each other in the hall, it was just an "Oh, hi!" type of thing. It wasn't until two years after high school that we found each other on Myspace (Yes I know, Myspace…Laugh it up!) and started talking. We were each with another person so it started out talking, grew into friendship, later down the road…a relationship grew!

Mark is the sweetest, funniest, most amazing man you will ever meet. I swear, it's like he has this hard shell...  But once you get past that, you see it. He surprises me with flowers, sings to me, makes me laugh when I'm crying and wipes away my tears. If I or our son needs or wants something, he'll go out of his way to make sure we have it. He's the most amazing father… Going to sleep and waking up next to him everyday - It makes me the happiest woman alive. He is my other half and my soul mate. Without him, I wouldn't be me.

How long have you and Mark been together?

Happily married for 3 years since December 28, 2008. But we've been together almost four years.

So when did you first develop Epilepsy?

I was diagnosed when I was 13 years old. At first, I thought it was no big deal. Eh, seizures? I told my friends… I guess they must have told their parents because the next day they all acted weird. The only real friends I had were the true ones… and the one who had experienced my very first seizure with me. (Shout out to her and the family!)  But any who, I was having a ton Grand Mal seizures when I was younger, so there was no time for boys or anything like that. Shoot, I barely had time for softball!

How have you changed from then to now?

Honestly, I would have to say I am healthier. But I am just as scared as I was back then in middle school when they first told me I had Epilepsy. I have an amazing doctor who knows what I need and has been helping me since I was 17. (Personal note from Mandy: Malorie has the same doctor as me!!! How cool is that?) He has not steered me wrong when it comes to my medication. (Compared to the previous doctor, who changed my meds every time I had a seizure.) 

What makes me scared are the times I have been hospitalized. When I was living in Virginia, I had 8 in a row and I was hospitalized for a few days. Back in Texas I had 10 in a row, and I almost went into a coma that time. I woke up in the hospital not knowing what happened, a busted up mouth, black eyes… It was just horrible. I think the only positive thing I can say out of that was that my son was not with me to see me go through that. However, I was alone. My husband had gone back to Florida for work and I stayed in Texas for a visit with family. Thankfully, after those seizures, things have settled down because of the medicine I am now taking. So let's see how things go from here.

When did you tell Mark that you had Epilepsy?  

I can't remember the exact time I told Mark I had epilepsy… I think it was the first time we really talked... Like a heart-to-heart conversation. My thing is, I wanted to get it out there. I didn't want to start liking and eventually start loving someone who didn't know my condition right off the bat. Truth? I was scared out of my mind what he'd think… I REALLY really  liked this guy and was already falling in love with him… I just hoped that once he knew, he wouldn't be freaked out.

The previous boyfriends in the past had always said "Yeah, its cool, I support you". One of them actually did. The other... Well, we were fighting and I told him not to stress me out because I might have a seizure. He just reacted like "Oh, brother...". Next day, I had one - And oh, yeah, I dumped him.

Anyways, back to my love, Mark. I can remember telling him that I needed to tell him about something... Something serious. Then I just came out and said it. "I have Epilepsy." I remember him kind of being silent... But then being cool with it. Just like "That's it? I thought you had like 12 toes or something." Making a joke… He asked me "Did you think I wouldn't like you because of that? Well you're wrong!" And that's the day I knew I would spend the rest of my life with him.

Has Mark ever seen you have any type of seizure? 

From my memory, I can only remember Mark telling me he's seen me have about 9. There were eight seizures in Virginia. I had just started taking birth control. (For the first time ever). My OB had told me they were safe to take with my medications, and I had been taking them for about two weeks. I remember laying down with my son (who was maybe 6 months at the time)... Next thing I knew, I was talking to people I didn't know and my vision was blurry. Then, I fell asleep again. 

When I woke up my husband told me I was in the hospital and had just had eight seizures. My main concern was "Where's my son?" I was upset with myself… Seeing as I let myself take the birth control. I guess I feel I could've prevented them by not taking it? It's just that this whole time I've taken my meds, I've never taken anything because they seem to counteract with it. And that one time I felt I was being selfish and took some birth control.

The other time my husband saw me have a seizure, he only caught the end of it. He was at night school at the community college across the street from our house. I was at home with our son watching American Idol. He got out of class early, and walked in on me having it. Again, I woke up all groggy, wanting to know where our son was. He explained he was in bed already, then explained what had happened and put me to bed.

It's funny... I was going through his phone last week or so, and saw a picture of myself in the hospital with the black eyes and in tubes - Just a big mess. And I think to myself, "This is the man I married. I have a child with him and we're talking about having another one soon. Mark has seen me have these seizures, (and they're not small ones, they're the big ones! The big old Grand Mals). Yeah, it is embarrassing. I wouldn't want to see myself or a loved one go through that!" I asked him, "Ugh, why do you have this picture on your phone??? I'm deleting this!!!" He said "You're not going to go through that again. I looked past that. Babe, you're beautiful no matter what you look like or what you have gone through." Another reason why I'm lucky to call him my husband.

 

Are there any special precautions you have to take with your husband in case you are to have a seizure?

There are a lot of precautions we both take. My Grand Mal seizures aren't the type that come out of the blue. My triggers bring them on. So if there's a movie we want to see that has a lot of action with flashing lights and such, we both already know that's out of the picture. We don't go to concerts or clubs anymore. It doesn't really phase us about the clubs, since we are parents. But we would love to see a concert together since we both love Christian music so much. There are also some shows on TV that I'm constantly covering my eyes cause of flashing lights. It has come to the point where I don't even watch them anymore with my husband, I just go to the other room.

We also try to lower my stress… He tells me "Malorie, breathe… You're gonna cause yourself to have a seizure and I KNOW you don't want that." And in the end, all is well. I know if anything were to happen, he would know how to take care of me, since he has in the past. But we both just don't like taking chances.

Does Mark worry about you a lot, with having Epilepsy and such?

Oh, I know he worries. Sometimes, I think he worries too much. (Sorry babe! Love you!) However, he's the first guy to ever constantly worry about me and that makes me feel so good.

He's always telling me to watch those flashing lights, cover my eyes, calm down, stop looking, stop, stop, stop… Sometimes it bugs me. I've told him before and he gets mad at me, saying that he just is trying to look out for me. Wanting me to be safe and not have a seizure. I do understand, I really do, and I don't want people to think that I'm not grateful for him looking out for me. It's just a girl's gotta have a little room to breathe… Haha, just joking. I'm so glad that Mark is aware of my triggers and is looking out for me. It shows me that he loves me and that's all that matters to me.

What is it like dating someone when you have Epilepsy?

Back when I was dating it was kind of weird. Some guys would be okay with it, and some wouldn't. Thankfully I found an amazing man who accepts me for who I am.

When Mark and I first started dating we had went out for our birthdays - we're 3 days apart - I hadn't told him about my stress triggers so he didn't know what brought them on. Anyway, we had went out for our 21st birthday and stayed out ALL NIGHT. I stayed at his mom's place, but didn't sleep until like 5:00am? The next morning I had to be at the hospital at 8 cause my grandpa had surgery. Sure enough, I had a Grand Mal at the hospital that day. Mark told me he was so upset and so disappointed in himself for doing that to me.

But it can be hard at times. Like any marriage, there comes those stressful times. And since I have Epilepsy, I need to know my limits and how to control it.

What are your dislikes about the effects Epilepsy has on your marriage, if any?

Wow, my dislikes… Where do I start?

The medicine. The new one, Depakote - Been on it for almost a year. I've put on about 30 lbs. I feel so disgusting. I feel I should be more beautiful for my husband. I always ask my husband how I look, and he always tells me "You're beautiful babe".  I get mad because I don't believe him. And we start fighting… Why? Because I feel ugly over a dumb seizure medicine when my husband thinks I look fine.

Then, it's having to sacrifice so much. We want to do the fun things other couples do, but I feel I'm holding us back. He tells me all the time, "It's okay, we're fine with just a movie and dinner." But I know that deep down, he'd like to go to cosmic bowling one night, or watch fireworks together somewhere.

I hate, and absolutely HATE that he has to constantly worry about me. We live in Florida now, with no family to check on me. So we have to constantly be talking throughout the day. When he doesn't hear from me in an hour or two, he starts getting very nervous. I don't like that for him. For once, I want him to enjoy his day worry free.

Are there ways that Epilepsy has benefited your love life, or made it stronger?

I do believe it has made us stronger. He takes my seizures VERY seriously. Maybe more serious than I do, I think! Haha. He knows my medication dosage like the back of his hand. I thank God everyday for sending an amazing man like Mark into my life.

Has anyone ever discriminated your loved one for dating someone with Epilepsy?

Not that I know of. If so, I'd be very upset with whoever is doing so.

How do you and Mark feel if/when people crack jokes about your Epilepsy?

The only people who have cracked jokes about my seizures are my family. And they're usually just trying to cheer me up when I'm down. They'll say, "Nana Cakes, don't get upset, you'll have a shaky shaky and fall on the floor!" I'll laugh on the outside, deep down, it does hurt, but its family... So what can I say?

There aren't really people who have really cracked jokes about my seizures - Or at least not to my face. My husband and I have seen things on TV where people make jokes like "Agh! I'm having a seizure!" And we just look at each other and say in unison "Not funny." Its crazy because I know we both think the same thing.

Do you ever wish that you didn’t have Epilepsy? Why?

Sometimes I do, sometimes I don't. I know at least twice a year I have a breakdown, and when I say breakdown, I mean I breakdown. I am bawling in tears. The last time this happened, was back in April when I was hospitalized. I was so depressed about what had happened to me. I felt like I HAD died, it was taking a toll on my marriage, and it sucked. I broke down just crying and crying. I prayed and prayed. I can remember asking "God, if you love me so much, why? Why are you doing this to me? Why must I hurt? Why must I have this condition? Why did I almost die? I have a 2 year old son, an amazing family who I LOVE... Why would you try to take that from me?"

I know that my God wasn't trying to hurt me. In all actuality, I feel like he was trying to teach me something from all of that. My God loves me. He would never, ever hurt me in any way possible. Like it says in Psalms 73:26 "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever."

What would you say that the biggest struggle is with marriage when you have Epilepsy?

The biggest struggle being married and having Epilepsy…hm. I'm a stubborn girl. I like to do things on my own, my way. So I would say having to always rely on Mark for something. Since I'm unable to drive, I can't really go anywhere without him. I'm not saying I want to, but still. It would be nice to have that freedom.

What would you say is the coolest thing about having Epilepsy and being married to someone who doesn’t have Epilepsy?

For me, it's that feeling that Mark loves me and is there to comfort me… To take care of me. At first he didn't, but once I explained everything… It just fell into place. If I'm having an off day, and I just want to cry, he'll do something to make me feel better. He'll get a movie or buy me a candy that I like. Hehe. He just GETS me. That is why I love him and he is my best friend, husband, and soulmate.

If you could give advice to other couples like yourself, what would that advice be?

For the person with Epilepsy - Do not, and I repeat, do not be ashamed of your Epilepsy. Be yourself 100%. You were born this way. If that special person doesn't accept who you are, then obviously they're not "the one". And if they are the one, talk about it. Tell them how you feel. Tell them everything there is to know about you. They will understand. And they will love you.

To those who don't have Epilepsy - Support your loved one!!! That is all we want!! Do not bring us down and don't crack jokes about it. Ask questions if you don't know what to do in case of an emergency and be understanding. Know that we need you, and if something were to happen, we would WANT and LOVE you to be by our side holding our hand and taking care of us. Most of all, just be there for us. Because at the end of the day, all we need is you and your love.

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