@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