Am I disabled? Now what.

I really appreciate your comment and perspective. This is great news for you and I am so happy to hear what you have experienced.

We are all different and our experiences are unique. I wish we all experienced the same responses to the meds like you have enjoyed. My epilepsy is resistant to meds and my Mayo doctors are still working on a way to mitigate my seizures.

Thanks for sharing your journey.

Epileptic seizures are not a choice. I don't wake up and say, wow today wod be a great day for a seizure. Or I'm tired of working so let me have seizures in front of my clients so I am so humiliated in front of them they no longer want to work with me. No one would want that.

You are right that we can choose how we process our chronic medical condition. This is the battle anyone with epilepsy has to fight. We also have to confront our internal challenges and those who try to invalidate our own experiences.

I write to try and keep people from going down the road I did. It wasn't a pleasant journey. I need to tell more about my TBI journey for people to understand.

My disability is determined based on how I live with the possibility of having a seizure. A seizure is disabling, I don't let the possibility of having a seizure cause me to become totally disabled.

Seizures ended my life as a CPA, I went from being productive to being a burden. My life changed in seconds with a TBI from a car accident. It was as if I had a sudden onset of dementia, I couldn't think straight, remember where I was or what I was doing, got lost walking around the block. Someone had to be with me 24 hours a day. I no longer had a life. I became so despondent that it scares me to think of what I might have done and how close I was to doing it. I had to change my thinking.

I don't wake up thinking today's a great day for a seizure, I wake up believing today will be a great day. I try to see a seizure as an event in my day and not my total day. Yes, a seizure is humiliating, I often apologize after one. I know there are people who don't want to be in public with me because I may embarrass them with a seizure. I can't let that person control my day and I encourage everyone else not to let that happen.

There are days I just want to crawl up in a corner and vanish from the world. I can't allow myself to dwell on those days or I'm "dead" long before I die.

Please don't consider any post as being offensive. A car accident turned me from being productive to being a burden, instant case of dementia, there were times that I couldn't remember where I was or what I was doing. I needed someone with me 24 hours a day. It was a long road back to independence. A bad fall in October 2023 caused my seizures to come back with a vengeance. I refuse to let that send me back to the mental condition I was in 20 years ago. Stay strong!

I apologize for my over reaction. You have been through a lot. My journey is not the same as yours. I try to stop a problem before it happens. I wish you well and look forward to more of your posts. Take care. Stay safe

No need to apologize, this is a safe place to say what you feel. This site helps me deal with my challenges. I encourage you to post questions and talk about overcoming your challenges. People need to know how others coup and learn of their success stories.

@dannoyes
Hi Dan,
The discussion you started has stayed with me.
Like you, I'm also very resistant and sensitive to medication, and I know exactly what it feels like to not always feel in control of ourselves and our day, not because of external events, but because of something happening inside us.
I looked up some definitions of what constitutes a disabled person, and one says: "A disabled person is someone who has one or more disabilities that substantially limit major life activities." Honestly, I don't feel this describes me.
Even though I've had epilepsy since my teenage years (living decades with it without even knowing!), I've achieved much in my life and continue to accomplish things - sometimes even more than people without such a condition. Just look at yourself, Dan - you're currently writing a scientific article on how climate can impact the onset of seizures! That's incredible!!!
Okay, I don't drive anymore, and I need to take certain precautions, but that doesn't make me disabled. I also had to leave my job when I was diagnosed in 2019 at age 48 due to treatment challenges. Looking back, I see that period as being sick rather than disabled - similar to what people experience during cancer treatment, or like what my husband went through with his herniated disc. I haven't returned to my previous career path, but I'm still very much an active person. While some doors closed, others opened up in my life.
My feeling is that I'm different from people who don't have epilepsy - yes, I have certain limitations - but that doesn't make me disabled or any less valuable. Like @tonyde, I believe it's how we view our epilepsy and our mindset that determines whether we see ourselves as disabled or not. My neuropsychologist has been incredibly helpful in this process - she's helped me figure out new ways to manage my condition instead of letting epilepsy run the show in my life. Of course, I'm not talking about severe epilepsy syndromes like Dravet Syndrome, which can truly be disabling.
There's a movie I've shared in many discussions that aligns with my perspective on this. It's called " Shrikanth" and tells the story of a blind man who attended MIT and became a successful entrepreneur. Here's the trailer link for anyone interested: https://www.youtube.com/watch?v=7Zt2hvMKBBk
Wishing you all a good Sunday!
Chris

Well said, you're one of the people that helps me stay positive. Seizures occur in the brain, how we deal with them is a mindset. Tony