My name is Jennifer and I am 28 years old. I have had epilepsy for almost 4 years. Life changed drastically from the very first seizure. I remember being very confused over everything including thinking "How this could have happened to me in the first place?" and where my life was going to go from that point on.
Many people in my life did not understand what was going on with me and I also didn't really want to tell too many people until I knew for sure exactly what was happening. My job was the most important thing to me at the time and even though I was single I still wondered how people would react if and when I wanted to start dating again.
Many people in my life did not understand what was going on with me and I also didn't really want to tell too many people until I knew for sure exactly what was happening. My job was the most important thing to me at the time and even though I was single I still wondered how people would react if and when I wanted to start dating again.
I met Jackson through the website Tumblr.com. Not only do I have epilepsy, but I was born with a genetic disease called Polycystic Kidney Disease (PKD) and was pretty symptomless until 6 months before my first seizure. At that time I developed constant pain in my kidney areas and high blood pressure. I wasn't on Tumblr looking to find anyone other than friends to talk about my interests with and also support from people who were dealing with my illnesses. I track tagged PKD and stumbled across Jackson's blog. It was 3 days before my 28th birthday and I came across a post he had written about how he had spent 15 days in the hospital and how it had nothing to do with PKD, but other issues he was having. He mentioned that he had PKD in his family and showed concern about it.
I did what people normally would do in the social networking world and I started to read other blog posts he had written, and other things that he had re-blogged. Soon after I found out that we had more in common than just having PKD in our family. I was attracted to his writing style - his love for art, and how he seemed just by looking at his posts. He seemed to be a very caring and open-minded individual. I had only met up with a handful of people from the internet before and there were 2 instances where they were actually dates, because I prefer to get to know people in person instead of just trusting what people say on the internet.
I decided to message Jackson to tell him that if he ever needed someone to talk about PKD or anything else that I was there for him if he needed me. Then, on my birthday I woke up to a message from him wishing me a happy birthday and we continued to message throughout the day. I didn't find out until later that Jackson had been reading through my blog as well and was just as interested to get to know me better as I was in getting to know him better. I didn't have any birthday plans other than hanging out with myself online so Jackson and I suggested Skyping each other. I was very nervous because I had never Skyped with anyone other than my friends.
When did you get engaged? Tell us the engagement story!
I knew from that first Skype meeting that Jackson was going to be the person that I was going to spend the rest of my life with. I remember not caring about what anyone thought, nor what he thought. I just knew I had to tell him. Once we spoke face to face, even though it was through the internet, we discovered we had many little things in common such as the time we were born (3:45pm) and how much we weighed when we were born. (Little synchronicities in our lives, even though they may seem silly and trivial to others, always mean a lot to us). We also share the same outlook on life and hav similar passions such as art and writing.
We knew it was a bit fast, but Jackson proposed to me on Skype on August 6, 2011. I hadn't even met him in person, but I said yes and received my ring in the mail shortly thereafter and have been wearing it ever since. Jackson and I have had 2 vacations together where we were actually able to be together in person because he is currently attending college at Woodbury University in Burbank, California, and I am currently living in Hudson, Florida. Being together in person only confirmed what we already knew and our feelings are still as strong as they were when we didn't even know each other except through blog posts.
When did you first develop Epilepsy?
I first developed epilepsy on Christmas Day in 2009 and the seizures haven't stopped since. I did everything I could to follow my doctor's orders by taking my medications on time, and I was still able to work 9 months... Until suddenly my seizures became worse. My doctors tried 6 different combinations of medications to try and control my seizures. But every time they seemed to get worse and the side effects were more debilitating than the seizures themselves, it seemed. I finally came to the decision after 2 years and after losing my job that I would start the process to receive disability. I realized that the medication route was not for me and that I could control my seizures much better without medication.
How have you changed from then to now with your Epilepsy?
Epilepsy has changed me in many ways. When I was first diagnosed I was very confused and depressed and angry. I lost a lot of friends because I could no longer participate in many activities because even the most subtle of lights and noises could cause me to have seizures. I also dealt with accusations from some friends and family members that I had done something to cause me to have seizures and it was hard to explain even with doctors' help that it was just something that happened and that it may have had something to do with my kidney disease or that I may have always had it to begin with. They still weren't entirely sure of the cause other than they knew that I had a possible small stroke (that they could tell was old) in my temporal lobe.
A positive thing that has come from having epilepsy is my appreciation for the little things in life. Because I worked and had a fairly busy social life I never had enough time to focus on creative projects. Now because of my inability to work, I get more opportunities to do things that make me happy than most people with hectic schedules. It is still difficult to accept that I can't always enjoy going out and that I can't work anymore, but I do my best to stay positive.
Sometimes it is hard dealing with judgements from people when I am out in public because I have to wear sunglasses indoors and sometimes I have to use a wheelchair to get around, but again, I try to stay positive. It's also a way to spread awareness about epilepsy and PKD because I feel it is important that we someday find cures for these illnesses.
Sometimes it is hard dealing with judgements from people when I am out in public because I have to wear sunglasses indoors and sometimes I have to use a wheelchair to get around, but again, I try to stay positive. It's also a way to spread awareness about epilepsy and PKD because I feel it is important that we someday find cures for these illnesses.
When did you tell Jackson that you had Epilepsy?
Jackson already knew because even though it had taken me some time I added it to the introduction on my Tumblr blog - so that's why he was already aware of that fact. It never bothered him in the slightest, even in messages. He did ask me a lot of questions about it to get a better understanding of the illness.
Has Jackson ever seen you have any type of seizure?
I have 3 different types of seizures. I have absence, tonic clonic, and partial complex. Jackson has seen me have all 3, both online and in person because I have them pretty much daily.
Are there any special precautions you have to take with Jackson in case you are to have a seizure?
Jackson talked to me about epilepsy and my seizures and was very understanding. He also took the time to research everything he could online to see how he could help to prevent and what he could do during them. I can sometimes hear during my seizures, so if we are online together or on the phone, he will calmly tell me that I am having a seizure and that I should lay down someplace soft. I usually get auras so I can tell him when I am about to have one and he'll just wait for me to come out of it. He has even alerted other people in my home to let them know if I am in a place he feels might not be safe.
In person, Jackson knows to keep me calm and to keep my head away from hard or dangerous things and he also knows that afterwards I prefer to listen to soft music and have no lights on. So he will do everything he can do possible to make me comfortable until I feel better. He also helps make me aware of where flashy lights may occur because of the fact that I am so photo and light sensitive.
Jackson struggles with anxiety and I know that sometimes that my safety is a stressor for him. I feel bad sometimes about this, but he assures me that he is just fine and that not only does he want to be supportive of me, but that I am also a good support system for him. I feel that this is true and I think that because of what we both struggle with daily, we have a special understanding of things that other people in our lives may not.
What is it like dating and being engaged to someone when you have Epilepsy?
I feel that the biggest challenge in dating with epilepsy is the embarrassment that comes with having seizures. Not only am I embarrassed by the seizure itself, but I find myself being embarrassed over the fact that I feel like a burden. Even before epilepsy, I never liked to be someone who bothered others with my problems and was very independent. Now I need extra help with everything usually and even though I trust and love Jackson, there is still a fear that it might become too much for him. We have talked about this before and Jackson always assures me that he loves and cares for me for who I am and that me having epilepsy doesn't matter.
In public is the hardest part because sometimes I notice people wondering out loud what is wrong with me and I am concerned about how that affects Jackson. However, the feeling of having someone who loves and cares for you despite your illnesses means way more to me than what strangers think. I couldn't be more thankful that he is in my life.
What are your dislikes about the effects Epilepsy has had on your dating/engagement if any?
I don't like when people make discouraging remarks to Jackson about what it will be like to be married to and live with someone who has epilepsy. Also, Jackson gets just as angry and upset as I do over remarks made on TV or in public regarding seizure jokes, and that is sometimes more difficult than my own anger. It's more difficult because the person who I am in love with is upset too and I don't like seeing him angry or unhappy. However, we still always manage to remain strong especially when we're together.
Are there ways that Epilepsy has benefited your love life, or made it stronger?
I feel that having epilepsy has benefited our love because we both take things moment by moment. We try our hardest not to get too concerned over what is going to happen tomorrow. Instead we are able to share moments together just in that moment because we never know if a seizure is going to interrupt activities that we are doing together. Also, whether or not a seizure is going to make me have short term memory loss.
The little dramas that a lot of our friends' relationships have don't really exist in our relationship because I feel we both have bigger things to be concerned with. We rarely fight and if we do it never lasts long because what we love about each other is much more important to both of us than the tiny little personality differences that might annoy us.
The little dramas that a lot of our friends' relationships have don't really exist in our relationship because I feel we both have bigger things to be concerned with. We rarely fight and if we do it never lasts long because what we love about each other is much more important to both of us than the tiny little personality differences that might annoy us.
Has anyone ever discriminated Jackson for being in love with someone who has Epilepsy?
As I mentioned before, there have been some comments made to Jackson regarding me and my epilepsy, but I wouldn't go so far as to say that it was discrimination. People have just mostly raised concerns, but no one has ever treated Jackson poorly because he is dating someone with epilepsy.
How do you feel when someone cracks jokes about your seizures? How does Jackson feel?
It truly depends on the source and context to me. We have created a meme together on Tumblr called Seizure Beaver and many find comfort in the humor. I feel that laughter is important in dealing with anything but it does upset me when people who truly do not understand flat out make fun of seizures.
I have only had one instance in my life where someone personally made fun of my Epilepsy at a party and they did not think I could hear but I could and it was pretty upsetting. My friends know they can joke about it with me and other people with Epilepsy themselves know that they can too. Like I said, it just really depends on the source and the context in which the jokes are used. I know Jackson feels the same way and we've talked about it many times.
I have only had one instance in my life where someone personally made fun of my Epilepsy at a party and they did not think I could hear but I could and it was pretty upsetting. My friends know they can joke about it with me and other people with Epilepsy themselves know that they can too. Like I said, it just really depends on the source and the context in which the jokes are used. I know Jackson feels the same way and we've talked about it many times.
Do you ever wish that you didn't have Epilepsy? Why?
I wish every single day that I didn't have Epilepsy. It doesn't drag me down too deeply into a depression as bad as it did when I was first diagnosed, but it is still difficult to deal with. I worry about seizures a lot and usually because of how they make other people feel. I don't like being someone who pretty much needs constant help and supervision and I as I mentioned before. Not being able to work really hurts me sometimes because working was something I truly loved to do.
What would you say that the biggest struggle is with love when you have Epilepsy?
Distance right now is a struggle with Jackson and I and having Epilepsy doesn't help much there because I feel sometimes he is more worried about me when he might not hear from me too much on a particular day. A day when we're either busy with our own personal lives or because I am feeling pretty sick.
Other people not understanding Epilepsy and possibly wondering why Jackson would choose someone with it sometimes weighs on my mind a lot as well, but I know we are supported by both of our families and friends that we have because they want us to be happy. I don't like feeling bad when a movie has to be paused or a conversation has to be started over because of a seizure but it always seems to work out okay when all is said and done.
If you could give advice to other couples like yourself, what would that advice be?
Communicate openly and honestly always and trust both yourself and your partner. These are the key elements that I feel Jackson and I are strongest with together. I would also tell other couples like us that they should always hold on to hope and never give up. Jackson helps me with those things and tells me all the time that I help him with them too.
~ Jennifer's Conclusion ~
Even though Jackson and I are not able to be with each other 24/7 like most couples are at this moment, we have plans for me to move out to CA this summer. We are both excited about this next step in our relationship and what it means for our future life together. Jackson supports me in so many ways - Not only in handling my epilepsy, but in my own personal life decisions. He has also been one of the few people in my life who has not ridiculed me for my belief in God and my life as a Christian. My faith is the one thing that I have to hold on to in dealing with all the craziness that is my life. And I feel that God sent Jackson to me because he knew that I needed someone with just as much faith as I do and who also has the strength and willingness to be in a relationship with someone who has epilepsy. I couldn't have asked for a better partner to continue this journey of life with and I know that the people in both of our lives will continue to support our relationship and the life we have together.
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I hope you enjoyed another Epilepsy love story! Click here to read the many others, and stay tuned to the blog for Jackson's POV coming shortly!
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