I Am A Person With Epilepsy Who

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Comment by bryan farley on May 10, 2013 at 3:40pm

Thanks Paul.

Sometimes small communities are better than large communities, because everybody has the small community in common and people have a better chance to see more about who you are in totality. 

Why did you move to the small town?

Comment by Paul Partridge on April 28, 2013 at 4:43pm

I am 52 and was diagnosed with epilepsy when I was 10 months old. I know all to well those who act interested and at the same time from their actions you know that they aren't willing to share with you, but they are willing to judge you. I have recently moved to a small community in Iowa where there is a whole 458 people. I am afraid to have even the most casual of relationships because I am sure someone with epilepsy would be frowned upon in this little town. Sometimes I still want to help people understand that people like myself aren't a lot different from them, and then I remember a lifetime of being judged because of me being different in one way they didn't understand and only acted like they were in order to decide if I was a freak or not to them. At that point it didn't matter if they understood. I could use some positive insight on how to handle a situation with a person of interest if you have any to offer I am listening. 

Thanks   

Comment by bryan farley on April 18, 2013 at 4:14pm

Thank you Ingrid and Nina for sharing. I often feel better after sharing... and sometimes I feel worse. I am also very aware that sharing does not automatically change the behavior of others, at least not the way that we may want it to. 

I look at sharing the same way I look at prayer (yeah, I know that I have stepped into some sensitive areas.) Sharing works on the person who shares... and it might not even work the way you intend. But it works, so I keep doing. (same with prayer.)

Comment by Ingrid Mondragon on April 18, 2013 at 1:50am

I have had epilepsy since childhood. I just came out publicly announcing to my firneds about my condition about a few weeks ago. i felt so free to finally just say that I have seizures and its a part of my life.  really enjoyed your video, maybe one day I will make one. i have Partial seizures with secondary generalization. i used to function really well, but for some reason the past 7 months have been difficult. I just started taking a new medication called Keppra. i take 3000 mg. a day. Nice to meet you!

Comment by nina marie hall on April 13, 2013 at 5:01pm

Well guys I've had this problem since I was little an yea sure kids use to pick on me but I never backed down or cried. I just told them leave me alone if they didn't I was gonna kick their ass. Eventually I became friends wt those guys an girls b/c I the friends I had stood up for me an wt me. So we did kick their ass for teasing me about my epilepsy an I was friends wt them after that. To this day if ppl don't except me for how I am then that sad.  I see it as they are the ones being the small guy an acting like an ass an a little kid.

Comment by bryan farley on April 4, 2013 at 2:45am

Stacy,

When I was diagnosed, my mom was pretty much told by the doctor to keep it a secret. The doctor probably said, "act as though nothing changed" or something like that. Parents usually want to support their children, so I understand how a parent would encourage a child to keep quiet.

Also, now that I am a parent, I realize how tough it is to make the correct decision all the time... even the small decisions can be difficult. 

As for telling some people, I recommend starting small. Start with yourself and then tell people who are not able to hurt you. For example, communicating on a site such as this one is good, because even if someone says something hurtful, you have not lost much.

If you read some of my other posts, you will realize that it took me more than twenty years before I started sharing. When I began, my goal was to become honest with myself. That was it! I just wanted to share honestly WITH ME! 

Comment by bryan farley on April 3, 2013 at 6:55pm

Dear New User,

Your question about who and when to share is a common struggle. I would argue that this is a universal question many people understand when they extend it to a different topic. 

Some people hide their sexuality or their religious beliefs. Some people have secrets about eating. Even those of us with epilepsy hide many other parts of our lives. Not all secrets are the same, but the decision process is very similar.

When do we know? We test. Sometimes, we trust the information with the wrong people. Sometimes we share in ways that are inappropriate. Sometimes, we DO NOT share and other people know that we are hiding something. 

I do not have a great answer. I would recommend that you look at your own process about what you keep private and what you reveal. There are good reasons for keeping some parts of our lives secret. 

For me, the biggest problem was lying to myself.

Thank you for the question and for your concern.

Comment by bryan farley on April 2, 2013 at 7:43pm

Ana,

I will try to get to it.

Would you do me a favor? Do you see my most recent blog post? Would you leave a comment there about the topic? 

thank you,

bf

Comment by Ana on April 2, 2013 at 7:40pm

Hello Bryan

I am 42 years old, and I have epilepsy since I was 16 years old. I am at college right now, and I have to write and essay about how technology has help you to cope with epilepsy.

I have a list of questions that I would like to email you if you agree to help me.

Thank you for your help

Ana

Comment by bryan farley on March 31, 2013 at 5:05pm

Jake,

Thanks for viewing the video. I hear your frustration. I think it is pretty common for many of us. This site often allows some of us to share our feelings as much as anything. After we vent, we are able to understand what we want.

Do you know what you want to study? Is there a skill you want to improve? Or attain?

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