Connect with others who understand.

Sign up Log in
Resources
About MyEpilepsyTeam
Powered By
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

If You Didn't Have The Condition You Have Now , How Would You Describe Yourself Etc, Any Different Or What?

A MyEpilepsyTeam Member asked a question 💭
Lakewood, CO

I think that I would be pretty much the same I think, I think that just because I have the condition of epilepsy I have, I may have changed me a little bit, but not much I don't think as far as the person I am today, I don't let a disability as I've been diagnosed with determine my being me for who I am, I am not perfect and I am not a know it all either, but I am ok with who I am today in my life with, what do you think about ? What are your thoughts?

June 18
•
View reactions
A MyEpilepsyTeam Member

I've had it since I was four so if I never got it I would say my life would have turned out very different. I do remember when was very young most likely just before I got epilepsy, or it may have been just after I was obsessed with trucks, big machinery and construction. So, I would have been doing that.

June 18
A MyEpilepsyTeam Member

Due to having epilepsy I was divorced + lost my 3 children, even if it stopped now I would still feel the same.

June 18
A MyEpilepsyTeam Member

Yes, the adult-onset epilepsy changed me, especially after being mismanaged by my first neurological team. I was so grossly overmedicated that I was barely functional. I used to tutor trigonometry and algebra, I was a toolmaker/maintenance machinist and machine builder, now I have incredible difficulty working with simple numbers. My memory was my gift, now it's tattered and fragmented. My emotions were never a problem, now I could cry watching kids play.

The period of weaning from the massive doses of Keppra and Dilantin uncovered something very raw that I'd hidden all my life... I'm a victim of child abuse, and from finally revealing it I was diagnosed with Complex PTSD. I never even told my wife of 44 years anything about it. I thought it was behind me, but the perfect storm of my epilepsy diagnosis, overmedication, burying mine and my wife's parents, a series of court cases over my parents' estate, and the unexpected shock of retirement, all happening in a short amount of time, was the straw that broke the camel's back. I had a "nervous breakdown", with no way to get the worms back in the can.

I had plans for retirement, mostly shot down now because of the cost of managing all of this. I was a respectable and competent guitarist/bassist, now executing my chops is unattainable. Working with tools, climbing ladders, swimming, driving, watching the grandkids... there is a certain amount of uneasiness from everyone around me when I'm involved in activities that were once part of my life, and that I seriously didn't want to give up. The worse part of it is the feeling of being a burden. I am a fragment of my former self, now I have to be "watched". It was devastating to be suddenly cleaved from my sharp clear-mindedness and independence and thrown into a drug-fog, robbed of my dreams.

How would I have described myself? A musician on fire, a retiree with an agenda, a Mr. Fixit, a teacher, a marathon bicyclist, a recreational driver with no destination... I drew the short straw with this condition, right when I was finally cut free from a career, a boss, and a schedule. I accept it, it's not a disease, it's a condition, just like my Dupuytren's Contracture. But I do resent being kicked back down the stairs just when I finally worked my way to the top. Such is life, it could be much worse.

June 18
A MyEpilepsyTeam Member

Well before my condition I wanted to become a designer home interior. I love going to the lake. I like to go and do things out in the Heat. I can't do that anymore there was a time I had bought all these crafts to do and then when I ended up with a covid I had lost total interest with that everything else was before I ended up the covid I stay to myself more and I'm just being me and I've been trying to work on this one project I don't know 3 years and I hope that I could get it done this year because it's something I'm making for my daughter.

July 5
A MyEpilepsyTeam Member

Nothing different other than I would be able to drive and not have to rely on someone else and have the opportunity to attract friends.

July 4

Related content

View All

A Hypothetical Question Here, What If You Or We Didn't Have The Condition We Have And Had A Different One, How Would You Look At That?

A MyEpilepsyTeam Member asked a question 💭
Lakewood, CO

A ? About Our Conditions And Treatment And Such Etc, Just Curious About Below And Wondering Also About It,

A MyEpilepsyTeam Member asked a question 💭
Lakewood, CO

A Hypothetical Question. Below.

A MyEpilepsyTeam Member asked a question 💭
Lakewood, CO
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in