Married... with Epilepsy: Tyler & Stephanie - Part Two

By: Stephanie 

(Click here to read part one, by Tyler!) 

Introduce yourself and tell us about you and your spouse.

My name is Stephanie and I am a 4th grade teacher. I recently graduated from a Christian College in Florida. I have lived in Florida most of my life. After marrying my wonderful husband, Tyler, we moved about 45 minutes away from our college because of his job. 

Tyler and I enjoy simple things like going to the movies and watching tons of them at home and playing with our two dogs. We also love going out to eat and traveling when we get the chance. We are hoping to go to Comic-Con this year and the Macy’s Thanksgiving Day Parade next year. One day we hope to travel to Australia.

How did you and your spouse meet, and how long have you been together?

Tyler and I met in college. My husband was in charge of the drama team that my roommate was a part of. We also had a class together. Because Tyler and I had mutual friends we became Facebook friends. One day over Christmas break Tyler started instant messaging me. From there on out a friendship blossomed. That was back in early 2009. We officially began dating in March of that same year, were engaged a year later and about a year and a half later we got married.

When did your loved one tell you they had Epilepsy, and how did you react to this news?

I already knew that Tyler had epilepsy from my roommate. One night we went for a walk around our school’s track to chat. We wound up talking about all kinds of things, including his epilepsy. At first I was honestly nervous about the whole thing. I didn’t understand epilepsy and thought he could have a seizure at any time without warning (he’s never had a seizure without having an aura beforehand). I was able to tell him later that I was really freaked out by it and he was able to reassure me and comfort me.

Did your thoughts about their Epilepsy change over time? If so, how?

Yes. As Tyler and I talked more and become closer I was able to understand more about epilepsy which helped me to not be so freaked out by it. After we became engaged I was also able to go with him to his doctors appointments which helped me to understand more about what was going on.

Explain the most severe seizure you have witnessed your spouse having. What was it like for you?

I have seen Tyler having several grand mal seizures. It broke my heart to witness that. To see how much strength he had because of all the adrenaline going through his body made me sick. I knew when he came to again he would be so sore and so tired. 

Are there any special precautions you now to take with your loved one, in case they were to have a seizure?

Tyler’s grand mal seizures are so infrequent that we don’t take any special precautions because of them. If Tyler did have a grand mal seizure the best thing for me to do is to move things out of his way but not touch him. He has enough adrenaline running through his body that he has both at separate times punched through a concrete pillar and broken his hand and thrown a 6’3” 250 lbs. basketball coach across the restroom at our college.

Does your loved one’s Epilepsy ever make you worry? Explain your feelings on this.

Sometimes I worry that something might happen to him when I am at work. I trust God and know that if anything ever happened there are many many church members in our town who would gladly help him out any way they could. But the fact of not being there is still scary and unsettling.

What is it like being married to someone who has Epilepsy? Do you see a major difference in the relationship than you would if you were married to someone who doesn’t have Epilepsy?

At times the fact that Tyler has epilepsy does not even cross my mind. It has definitely made me more aware of the flash of a camera and lots of lights coming on at one time like in a gymnasium (this was the cause of one of the grand mal seizures I’ve seen before). The only differences (I wouldn’t consider them major in the least) I see in our relationship is that until Tyler can go for a year without seizures again he can’t drive so I do all the driving and the fact that once a month we have to go to Wal-greens and buy about $90 worth of prescriptions.

What are your dislikes about the effects Epilepsy has on your loved one?

I dislike the pain that Tyler has to suffer through when he has a seizure. Even is he only has a petite mal seizure he still doesn’t feel like he’s on top of him game after one. I also dislike the fact that there are parts of Tyler’s life that he can’t remember. When he has a petite mal seizure he blanks out and a few seconds or even minutes of his day is lost. The other thing I dislike is that people, without thinking (myself included sometimes) see Tyler do something funny when he is in a state of confusion after a petite mal seizure or if he had to go to the hospital and was given adivan, will make a joke about something he did or said. Sure Tyler will laugh it off but sometimes it most hurt. I know it hurts me.

If any, are there ways that Epilepsy has benefited them or made them unique?

Before getting West Nile and it resulting in epilepsy Tyler was not planning on going into the ministry. Now he is a wonderful Godly man and preacher.

Has anyone ever discriminated you for being married to someone with Epilepsy?

Not that I am aware of.

Has anyone ever discriminated your partner because he/she has Epilepsy?

Our college was SUPER small and most people there didn’t understand epilepsy. Because of that if Tyler had to miss class because he was feeling an aura the school would sometimes give him a hard time about it. They required a doctor’s not if you missed class. But really, an epileptic wouldn’t go to the doctor because he’s feeling an aura. And besides that, how can one prove that he is having an aura. Toward the end our school got a little better but in the beginning it was a struggle for him.

 How do you feel when people crack jokes about your partner’s seizure disorder?

I get fairly upset. Even if they don’t know that someone so close to me has seizures I don’t allow ANYONE to make fun of them. One of my 4th graders made a comment the other day and I made it very clear to my entire class that it was never acceptable in my class to make fun of someone who had seizures.

Is your loved one upset about having Epilepsy? If so, what makes him/her so upset?

Not upset but maybe at times disappointed. There are a few things he can’t do because of it and I think at times he gets down about it. But 95% of the time he has accepted it and is fine with it even.

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

I wish that he didn’t so that he didn’t have the missing pieces of his days and the physical pain associated with the seizures but at the same time I wonder how he would have been different and if we would have met and gotten married.

If you were given the magical powers to take his/her Epilepsy away, would you? Why or why not?

Yes. I hate to see the pain he goes through with it and the struggles. He has suffered enough.

What would you say that the biggest struggle is with being married to someone who has Epilepsy?

Not being able to fully understand what it is like. Being newly weds I am still learning what he needs/likes when he is sick or feeling a seizure. With the epilepsy he can tell me what he needs but he can never fully explain what it is like no matter how many times and how hard he tries. I have to just accept that fact and let it go.

What would you say is the coolest thing about being married to someone with Epilepsy?

I think it forces me to be more in tune with him (not that I have mastered this by any means). I have to be able to read him and what’s going on in case he does have a seizure and I need to do something for him.

Do you think Epilepsy has brought you and your partner closer in any way?

For sure! I think it has given us a chance to really show each other how much we care by being there for each other through all of this. By physically being there to support him when he has to go to the hospital or him being there to comfort me if I get worried about something has forced us to step up, put our own concerns aside for the time being, and support each other.

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

Don’t give up! Stick it out and support each other. Love each other despite the flaws you make have. Be patient. Even though you may not be able to fully understand what is going on with your spouse, just try your best. Be kind when things don’t go exactly as you think they should. Above all, love each other deeply and passionately.