Looking for a pen pal

Iris,I sympathize with you.  I've told many people, "I have epilepsy" only to get a response, "seizures?"  That seems to be the extent of most people's understanding of epilepsy.  I find it painful to express the ways that epilepsy also effects me (like memory of faces) only to get a response, "Yah, I know; I have the same problem."  Then later they are shocked when I do not recall the people or events they do remember so well.  Life with epilepsy can be so lonely and it's good to have friends to share with who understand.  At 53 years old I am facing decisions about more brain surgery for my epilepsy.  I have concerns about the surgery doctors are proposing (resection of the right amygdala) but I also dread going through it without people who understand.  Worst of all, I meet so many who know little about epilepsy and the choices I have to make, and yet they think they understand and are so quick to offer their opinion.  GRR! I hope you can find help at this site, and let me know if you want to talk.Mike

Hi Iris, I am 54 years old and have been taking Dilantin for 40 years, I was diagnosed with grand mal epilepsy when I was just 14 years old, I would be more than happy to talk about living with epilepsy, one thing I have learned over the years that you might find helpful is to stay positive, no matter how rough life gets you can't let it get you down, when life gives you lemons you make lemonade, epilepsy does not define who you are you are, you are not epilepsy , you are Iris and you were born with epilepsy, I struggled greatly but I got my education, fathered two beautiful children and I  enjoy every day to the fullest, Iris dear I would be more than happy to help you if you want to talk about epilepsy and how frustrating it can be, a trick that helps me is to think about all the things I am able to do, I don't focus on the things I can't do because I have epilepsy because that will only make you sad. I sound a little corny but I know what you are going through and I am eager to help any way I can.

Are you in college? Were you born with the condition? Are your parents still crazy controlling? I'm 24....and my life hasn't changed since I was 2 years.