Dating... with Epilepsy: Mandy & Rafael - Part One

Rafael and Mandy sharing a dance at Mandy's high school graduation party in June 2011.

   By: Mandy Krzywonski


Introduce you and your boyfriend, Rafael.

You all know me pretty well by now… After all, this is my blog, isn’t it? Anyhow, for those of you who are reading my blog for the very first time, my name is Mandy. I’m 18 years old, and I have had Epilepsy for about 7 years now. If you have Epilepsy, or your loved one has Epilepsy, you don’t need me to tell you that the road of love is extremely rough. (As if it isn't already?) Something about having a loved one with a disability makes things difficult, but it also makes things beautiful in a lot of ways that are extremely overlooked.

I got with my darling Rafael one year, one month, and six days ago. I can honestly say that December 18^th, 2010 was the best day of my life so far. I finally found a real gentleman to call my own, and it finally wasn’t just a scene in a movie, or just a dream. Even better? He knew I had Epilepsy, and accepted me as if there was nothing wrong with me at all. (Not that there is anything wrong with me. Some people just like to think that.)

He’s the guy that everyone dreams of. He holds the door open for you, always holds your hand, wipes away your tears (literally), and loves to slow dance in the kitchen to your favorite love songs. He’s always ready to talk when something is wrong, and doesn’t give up until he’s made things right. We’ve hit our rough patches, but ultimately he’s one of the best gifts that God has ever given me. Out of all the boys I’ve been with, none of them could even compare to Rafael. He’s in a class that is all his own.

When did you first develop Epilepsy, Mandy?

I was diagnosed with Epilepsy in the 7^th grade. However, I believe that I’ve had it all my life. Now that I have experienced all these different seizures I am starting to come to realization that I have experienced many of them when I was just a child, but learned to live with them. At that time I was still adjusting to life, and you sort of have to accept the fact that all the weird occurrences might just be “normal” when you are only a child.

How have you changed from then to now with your Epilepsy? 

I have to truly say, that in spite of how brave everyone seems to think I am, I’m just as scared as I was when I was first diagnosed. Yes, I am a brave person. That is apparent even to myself. But being brave doesn’t mean that you cannot be scared as well. For example, you can say “Hell with it!” and take that leap, but it doesn’t mean that you are not afraid that you might not make it to the other side.

My seizures have gotten better in some ways, and worse in others. The Grand Mals (Tonic Clonics) are less frequent. As a matter of fact, I hardly have any. But unfortunately, all the other seizures are far more constant. I counted just last week and I have anywhere from 23 to over 97 a day. This is better than the hundreds I usually have, but not much better. I have learned ways to deal with them, such as breathing techniques and keeping a strict schedule to reduce seizure frequency. This is apparent throughout my blog, so I don’t have to get into all of these details.

Nonetheless, at the end of the day, a girl really just needs some support. Actually, I think anyone who has Epilepsy could use some support from a loved one after dealing with a day full of seizures. That will never change.

When did you tell Rafael that you had Epilepsy?  

I told Rafael that I had Epilepsy the first night that we talked on the phone. I believe that this was the third night that I knew him. May have been the second. Oh well, it was a long time ago. Anyhow, I remember being so scared out of my mind that he would get weirded out at the fact that I had Epilepsy and never talk to me again. Instead he just sort of asked me what it was like and shrugged it off as if it was as normal as scraping my knee. Some people would probably be looking for “Oh my gosh! That’s terrible!” or would be looking for someone to feel sorry for them. But hearing that it meant practically nothing to Rafael comforted me like you would not believe.

My last boyfriend, whom I dated for three years, actually dumped me constantly when he would notice that I started to become very sick. He never liked my Epilepsy, and it always bothered him when I wasn’t feeling good. So to hear that someone saw me as a normal person gave me a sense of relief that I couldn’t even explain in words.

Has Rafael ever seen you have any type of seizure?

Rafael has never seen me have a Grand Mal seizure. However, since I have so many other types of seizures a day, he’s witnessed probably thousands of them – Thankfully, they are all very mild. They are usually quick, and involve me staring or mixing up my words. We have a little bit of fun with the seizures in which I mix up my words. He’ll usually mock whatever I said and make a joke out of it… which makes me smile. He’s so funny… I love it.

The only times when I have been very scared is when I feel a Grand Mal coming on. Like I said in many blogs, I will feel the Tonic Clonic seizures coming on, but they never fully develop. Nonetheless, I get scared out of my wits. I will usually grab on to Rafael and tell him that I’m going to have a seizure and he just holds me and calms me down. This has happened far more than he's aware of in our relationship, but you wouldn’t believe how fast the seizures stop when he’s there to calm me. I always joke in my head that seizures must be pretty darn afraid of love because they seem to be less constant when he’s around. Maybe it’s just the sense of knowing that he would take care of me if a Grand Mal ever struck that comforts me so.

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

There are several special precautions that we both have to take. If I’m having an extreme amount of seizures (past the count of 30 a day), we avoid going out to the movies. Something about the loud noise, giant screen and flashing of scenes really makes for a night of seizures, migraines and nausea. Instead we’ll go get some dinner, maybe go shopping, or watch a movie at home on the couch. We still have fun, and we’re together… That’s all that matters.

Rafael would know what to do if a seizure struck me. My parents have given him the speech time and time again about laying me on my side, putting a pillow under my head and just staying with me until the seizure is over. But he’s pretty educated himself. The second week we were together he was searching all over the web for “How to care for someone during a seizure”. I am 100% confident that Rafael would take care of me.

Does Rafael ever worry about you having Epilepsy? Explain your feelings on this.

I worried myself for a while that Rafael didn’t worry about me enough. As I mentioned above, he’s never looked at me differently because of my Epilepsy. He’s never been the type like my father (Sorry Dad!), who is ready to pull out a wheelchair if I say that I feel funny. Rafael will simply hold me until I feel okay. He’ll call for my sister to get my emergency medication. Things like that.

But there are those times when I want him to worry just a little bit more. I remember once when we were watching a movie. I told him that I felt really sick. I could have picked better wording, but I was about to have a Grand Mal. Before I have a Grand Mal there is only a small window of time for me to choose my words, and they are hardly ever the right ones. He simply said, it’s okay, and held me close in the dark as he watched the movie we were watching. I don’t remember the movie, but Robert Downy, Jr. was in it.

Inside my head, I’m thinking “WHY THE HELL ISN’T HE DOING SOMETHING?!” Thankfully the seizure stopped dead in its tracks. I came out of it a little woozy. Laid there with him for ten minutes until I could speak, and then yelled at him for not helping me. He had no idea I was about to have a seizure thanks to my poor word choice.

I will say that after that experience he has been far more aware of my seizures or if I’m not feeling good. He’ll sometimes ask "Are you okay?" (Usually when I’m feeling okay). And when I tell him “Babe, I’ve had a lot of seizures today.” He knows immediately that it’s going to be an indoor, at-home movie night. He’ll offer to make dinner, even though I usually end up doing it just because I insist on cooking. But it makes me feel comforted that he really cares about my health and happiness in that way.

What is it like dating someone when you have Epilepsy?

Dating isn’t easy with Epilepsy. I wish I could say that it’s as easy as dating without Epilepsy. It really isn’t. None of my previous relationships were good ones. My last relationship is a prime example of why it is so hard. Some people just don’t understand how someone can appear to be fine, but be close to death if they don’t get home and take that emergency pill.

I truly don’t know why I put up with it, but I put up with being dumped over and over by the same guy for three years. Why? He couldn’t stand that I was sick all the time. Of course this wasn’t the only reason, but it was the reason half of the time. I was too sick to go see that action-packed movie he wanted to see. I was in the hospital and he couldn’t stand not seeing me for one week. One week was too long. He wouldn’t even come see me in the hospital!

And then there’s my darling, Rafael. It was the second month of our relationship and he was ready to come see me in the hospital when I was only there for testing! I had to beg him not to so he would get rest for school the next morning. But I know that if I hadn’t begged him and lied (Yes, I lied.) that visiting hours were over, he would have been there in ten minutes by my side.

There’s a lot of nervousness. You think to yourself “God, I hope he never sees me have a seizure. I look possessed by the devil.” And you think to yourself “I wonder if he would even have the courage to hold me as I convulsed on the floor…” or “Doesn’t he know that I could die in my sleep? Even I worry about that! How is he still here dating me?” So yes, it is harder when you're dating while suffering from Epilepsy.  As if dating isn't hard enough without it!

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

My main dislikes are the following.

•          The side effects of some of my medications turn me into a real wicked witch. This isn’t something that happens all the time, but it happens. Especially when I switch meds. I yell when I’m not even mad, or cry for literally no reason at all. I say things I definitely don’t mean, and make stupid choices that I normally wouldn’t make. You’d think it’s unbearable, but Rafael is always there loving me. I don't know how he does it. All the money in the world couldn’t thank him for putting up with those episodes.

•          When my seizure activity is high, Rafael and I are stuck with at-home date night. Not a huge deal, but I would kill to just go out and do something super exciting with him. Something like laser-tag, which I probably wont ever be able to do. I feel like he’s absolutely bored sometimes. But Rafael is so great at making each night memorable, no matter where we are.

•          I hate the thought that he has to deal with knowing I’m sick. I always wonder if it bothers him more than he shows me. I wonder if he worries that something might happen to me. I worry that I burden him with my health.

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

I know for a fact that Epilepsy has made us stronger. We deal with things each day that the average 18 year old couple doesn’t have to deal with. We care for each other in a stronger way because we are faced with these trials… but it brings us closer. He supports me in my advocacy like you wouldn't believe... He even had the idea for this interview series on Being in Love... with Epilepsy! We’ve built this amazing bond, and nothing can tear us apart. Epilepsy has taught me to love like there’s no tomorrow. I never would have loved that way before, so that’s one of the many reasons I thank God for Epilepsy, and thank God for Rafael.

Mandy hosted a project last year where she urged people to become advocates and make signs of awareness for Epilepsy. Above is Rafael's!

Has anyone ever discriminated Rafael for dating someone with Epilepsy?

I’m truly not sure if anyone has, but if they have I think I need to have a talk with them! I know it has happened to people in the past, so I could imagine that it may come up. I specifically remember my “first love” back in middle school. His mother told him to leave me because I might die. No joke…

                           

How do you feel when people crack jokes about your seizures? How does your Rafael feel?

When people crack jokes about my seizures, they’re usually saying most of it in good fun or to try and make me laugh. My uncle is a prime example of this. He does it only to make me smile. Of course it’s not nice to make fun of seizures and Epilepsy, but it’s very important not to take everything to heart.

There are those people who are just plain cruel. I’ve mentioned it to Rafael a time or two and he always comforts me and says not to worry about them because he loves me… And then he’ll usually tell me some corny joke, in which I’ll laugh because it isn’t at all funny. But that’s exactly what makes me laugh. That’s enough to take my mind off the cruelty.

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

I have my days… We all do. Those days when I feel like crap and I just want to get out of bed and go somewhere. But like I tell people time and time again, I thank God for my Epilepsy constantly. I would never have had the chance to reach so many people, from so many countries in the world if I didn’t have this one reason to reach them!

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

I think the biggest struggle dating with Epilepsy is getting over the fact that someone may or may not accept you with your condition. Most of the time we find ourselves pacing back and forth, wondering how the hell we’re going to tell someone that we have seizures… and we waste precious time. Because if someone really truly likes us, Epilepsy won’t change that. It’s somewhat of a blessing in that way… It helps us weed out the people that just aren’t worth our time!

We also have to get over that fear of thinking “Oh God, what if they see me have a seizure?” Well, just stop worrying about it now, because if you spend your life being scared of that, you’ll never have time to enjoy your relationship. Start living… Be cautious, but don’t worry. Take pride in who you are.

What would you say is the coolest thing about getting to date someone when you have Epilepsy?

I think that getting to share the experiences that you feel like you can’t tell anyone else with someone is the best part. It's the same feeling you get when you are connecting with other advocates, but much better. You have someone to share your secrets with, and they accept you for that. I can tell him about all my weird symptoms and not get looked at like I'm crazy. And the fact alone that he is willing to be with me... Someone who is, to many, so "out there"... That makes him my best friend.

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

My advice for the person with Epilepsy is not to be ashamed of who you are. Remember that if someone doesn’t accept you for YOU, and who you truly are, they are not worth your time. So go on and date people. Be yourself, and forget about those who bring you down. You’ll find that special someone who loves you for you in your own good time.

And for the loved ones who don’t have Epilepsy - Be aware. Show your support. Know what to do if disaster strikes, and be understanding during hard times. Realize that medication has terrible effects on a person. We get moody, our minds change quickly, and we’re not always feeling 100%. But sometimes we just need your loved  and your friendship. We need someone to hold our hands and tell us that they understand and still love us. Don’t forget about friendship – it still applies even though you’re in love. 

If Mandy is feeling too sick to go out, Rafael is always willing to have a movie date at home. He doesn't even mind if she falls asleep! 

Click here to read part two - Rafael's point of view! 

Click here for more awesome Epilepsy love stories! You'll want to read these!