Engaged... with Epilepsy - Jackson and Jennifer - Part Two

By: Jackson Patino

Hello. My name is Jackson Patino, and I am in my third year of college studying animation arts and art history. I have been an artist my whole life, enjoying the freedom of expression that I can utilize with it. I am currently going to school in Los Angeles; however, I grew up a four hour drive away in Las Vegas and lived there most of my life. 

A majority of my life and time has been dedicated to my studies, focusing on school and my grades. Studying art is much different in that I am constantly working on projects and tend to have paint stains on a majority of my clothes, and am working during the oddest hours of the day often without much sleep. That is how my past couple years have gone, working small part time jobs on campus to support myself. When I'm not working, I'm either staring at the stars or running around on the internet. That's how I met Jenn, through the most unromantic of blog posts that I made, involving the possibility that I might have Polycystic Kidney Disease. Thankfully, as far as I know, I don't have it, but I am so thankful that she found me because of that post.

Jenn and I are currently in a distance relationship, but that will be over come May. When we first spoke to each other via Skype, we both felt an instant connection. We both weren't looking for anything, but after a few messages back and forth and becoming friends, we both felt something with significant meaning between the two of us. We've visited each other a few times, the most recent was for Christmas and New Years. We both are our best supporters and nothing has made me happier than being with her. In as much as I try and help her with seizures, she helps me with anxiety, and we often feel that we aren't that much different from each other.

How long have you and Jennifer other been together?

Jenn and I met at the beginning of June in 2011 and were officially decided to be in a relationship on the 20^th , making it eight months in February. As soon as we started talking, we both felt a connection that we had never experience before, and after a little while, I knew that I wanted to spend my life with her.

When did you become engaged? Tell us the story.

I proposed on August 6^th, coinciding with a wedding that she attended that day. It was difficult in that we weren't physically together, and so it occurred over Skype. I remember thinking all that week that it was just something that I had to do, and it was like I couldn't help myself; I needed to propose to her because I knew she was my true love and soulmate. I remember being incredibly nervous, and she knew something was off about me. She said yes and was a bit speechless afterword. She was slightly confused at first, but then incredibly happy (I did sort of a pseudo-joke proposal in June after we started talking and were getting along so amazingly, involving a paper ring, which I mailed to her). I thought I had been obvious earlier in the week regards to engagement, even mentioning that I had an overcoming feeling about it a few days earlier and even asking her about gemstones the same day as the proposal. I got her a very simple amethyst ring, being her favorite stone.

When did Jennifer tell you that she had Epilepsy, and how did you react to this news?

As far as I can remember, I knew that she had Epilepsy from the start of our relationship, through her blog. I never really thought much of it, because it did not matter to me. My whole life I was surrounded by health issues, either for myself or a family member, and have come to accept what we are given in life and to overcome the obstacles and challenges that we have. Learning that she had Epilepsy did not matter to me, because I loved and love her for her, and everything about her, her personality, and just being in my life.

Upon meeting Jenn, I was not very familiar with the specifics of Epilepsy, but I was aware of it. I personally had never met anyone with Epilepsy, that I was aware of, or had seen a seizure before meeting Jenn. I was interested in it, as it is a part of her life, and wanted to know how it differs from person to person and that there are different types of seizures, which was something I was not aware of at all.

Did Jennifer's Epilepsy affect the engagement in any way?

Not at all, and I never gave her having Epilepsy a thought upon asking her to marry me. It is a significant part of her life, and mine as well now, but the fact that she has it does not change my love for her and my want to live with her over our lives. I cannot recall ever thinking about her Epilepsy when I came to the conclusion that I wanted to propose to her.

Did your thoughts about her having Epilepsy change over time?

If anything, I have grown a stronger love for her and an interest and awareness of Epilepsy and those who have it. Before meeting Jenn, I would have never given Epilepsy a thought in everyday life, but I now know and understand its affects on people and how it can limit daily life for those who have it. I am very aware of issues such as photosensitivity, and want to help spread awareness of Epilepsy so that way people have a better understanding of it and how so many things in daily life can be difficult because of the way the world is ignorant to it.

Have you ever seen Jennifer have any sort of seizure?

Yes, I have seen her have a variety of seizures, and am aware and used to their spontaneity. At first, I was not sure how to react to them, but I know now the best thing I can do is be there for her when she comes out of them and watch to make sure that she is safe from harm. I always try an make sure she is comfortable and situated okay in case she convulses, which generally are never bad when she does. When she comes out of seizures, she can often be a bit lost or confused so I help bring her back to speed and comfort and support her.

Does Jennifer's Epilepsy ever make you worry? 

When we first started dating, I would worry because I wasn't as familiar with it as I am now, and feared the possibility of her getting hurt during a seizure. It is hard sometimes when she has a seizure and distance makes it difficult for me to be there for her. I wish I could help her when she has needed it in the past. Today, it does not worry me as much, although it is still hard for me to not be around when I wish I could. I know that she is safe and that with Epilepsy, having seizures is normal and that the best thing I can do is be there for her when she is out of the seizure. I have come to accept the spontaneity of them occurring, and that if they happen, they happen. That is life.

What are your dislikes about the effects Epilepsy has on Jennifer?

What I dislike the most about the effects of Epilepsy on Jenn are that it can make her daily life difficult at times, and how Epilepsy has limited some aspects of her life. It is hard to see her have bad and lost days when seizures strike her badly, although I cannot understand the pain that she must go through on these days. It is most difficult not being able to do anything to help her and wishing that I could. Being there for her and comforting her during these times are the best thing for her and myself, because there is not much else I can do. Sometimes I think I make myself feel worse than I should because I feel so powerless against such a controlling aspect of her life. Seeing her persist and overcome the difficultly of having seizures makes me glad that it is not as controlling as it could be.

The confusion and distress afterwords is another aspect which can be difficult at times. Sometimes I'm not the best at helping the situation pass and bringing light to what just occurred, especially when the only method of communication is over the phone, which can make proper communication even more difficult. I try my best at comforting her and the situation, but sometimes I can make it worse by being ambiguous and not direct with what I say.

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

No, as far as I can remember, no one has ever discriminated against me for being in a relationship with her having Epilepsy. Most of my friends and family members have been very considerate and kind towards the fact.

  Has anyone ever discriminated or made fun of Jennifer because she has Epilepsy? What would you do if someone had done this in front of you?

Jenn has often experienced people not being very understanding of her Epilepsy, and because of that, have often been rude and unkind to her. People often don't take the time to just listen and possibly understand Epilepsy, and react towards what they see without giving thought to Jenn or the situation. I am glad that Jenn has found and has taken steps in understanding her personal manner of Epilepsy, and the photosensitivity and audiosensitivity that she has, but it is difficult to see when people take no time at all to be aware of the people around them, whether it be someone with Epilepsy or any other individual manner of health. People tend to only care to understand something that directly involves them, and helping spread Epilepsy awareness is something that I try to do as best I can.

What do you feel that you and Jennifer have to do differently because she has Epilepsy?

In some cases life is different, but in most it is not; it mainly consists of having an awareness of what can cause her to have a seizure. Having an awareness is not at all difficult, and it is now something that just comes naturally to me, even when we are not together. I often find myself thinking about videos I see and realizing their potential harm to someone with photosensitive Epilepsy. In most cases, what we do differently is just take the precautions needed to help avoid any seizures if possible. Understanding the lights and sounds that are around is essentially the best thing I can do to help in avoiding having seizures, and it is often all that is needed around the house.

Seizures often come unexpectedly or because of things beyond our control. Going out into brightly and intensely lit areas, or where flashing and fast moving lights are used are things we have to avoid. In most cases, being around the house is not a problem with regards to living life in a different way, but sometimes going out somewhere may not be possible. I personally am not the biggest socialite and crowd seeker, and things like clubs and shows aren't something I have the biggest interest in. These types of activities are often limited to her because of her Epilepsy. She isn't able to look at screens for too long sometimes, such as on the computer, and watching tv is often difficult, so we often find fun in other ways. Both of us enjoy painting and drawing, playing music, writing and reading. We're both very artistic and find joy in what we can create and find our own expression in.

  Do you think she is upset about having Epilepsy? If so, what makes her so upset?

Some days she can get upset, especially when combined with the constant pain she is in due to nerves and PKD. Epilepsy didn't come to her until later in life for the past half-decade, so I can definitely understand how it is upsetting on how it has changed her manner of living. What makes her most upset is that control that it can have at times, not allowing her to do what she wants, and causing her to have bad and confusing days, filled with pain and stress. She remains a positive person and finds that in life which she enjoys and can make bad days better. Faith and love help her on these days, and I know they are what help her overcome the difficulties that come with having Epilepsy. Overall, I know that she knows and accepts that what happens in life happens, and the best thing for you to do is do your best to overcome the obstacles that come.

Generally, she is not upset by it, and often helps as a driving force in spreading awareness and helping others. She has shared her story and helped people who are often new to having Epilepsy, helping to create a community and friendships with many others around the world. The two of us have helped people find humor in life with Epilepsy through a meme-based blog, as humor is always a good medicine.

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

Life and the love between yourselves are what truly matter. You shouldn't take fear in dating with Epilepsy, and it may even make you closer than you could think. Plans can change and things often can come up purely on spontaneity, which don't have to be bad. I can't imagine a better day than just relaxing to music and hanging out at home with my love. Be with someone because you love them, and don't turn away because you don't understand Epilepsy or any other type of affliction, illness, or disease they may have; take the time to understand what someone may have, and it may allow you to better understand that person or a whole community as well. Love is love, and nothing else should get in the way of that!

Click here to read part one!