1. < Epilepsy & Seizures

Am I disabled? Now what.

Posted by Dan Noyes @dannoyes, May 30 7:59am

There are two significant questions I think we all have to contend with. Am I truly disabled? If I am, then how do I live my best life despite my disability? For me, I might be going along well, and I think I can tackle the world, and then BAM, I'll have a terrible seizure. Yesterday, I was writing a scientific article about how climate (humidity, temperature, and seasonality) can impact the onset of seizures. I barely completed my article, and then BAM, I was seizing and badly hurt my arm. There are times I don't feel disabled, and then I'm reminded that I am disabled. Additionally, since I am unable to drive, I believe this is a clear indication of my limitation. Can you relate to this? Do you face those same questions? How do you manage it?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Dan Noyes | @dannoyes | 1 day ago
In reply to @kb2014 "I am not a victim. I have been seizure free over 11 + years. My paternal..." + (show)
@kb2014

I am not a victim. I have been seizure free over 11 + years. My paternal grandfather had a head injury had epilepsy and after I examined his death certificate he possibly died from SUDEP. I have agency over my life. I decide who and what is safe and healthy for me. I am not perfect but more than able to carry out treatment plans recommended by my doctors. I will say your post is rather offensive to me. I have no more to offer here.

Jump to this post

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.

REPLY
Dan Noyes | @dannoyes | 1 day ago
In reply to @tonyde "Disability is an opinion and not a fact. Your level of disability is determined on how..." + (show)
@tonyde

Disability is an opinion and not a fact. Your level of disability is determined on how you view yourself. A seizure is an episode, it comes and goes, there's no reason to worry about what, when, where and how bad other than giving consideration to how it might negatively impact others. Seizures do not control me. I decide what I can and cannot do.

The possibility of a seizure does limit me from doing some of the things I enjoy. I'm not attending my granddaughter's graduation because my having a seizure would ruin the ceremony and that hurts. I will join my family afterwards for a dinner celebration.

There are two ways of dealing with that (1) lay around all day in self-pity or (2) consider myself fortunate to be able to celebrate her graduation with my family after the ceremony. I'm fortunate, it was my decision not to go.
I can get in and out of the car and walk under my own power, there's no reason to be concerned with who gets to drive. There are people who are bedridden and unable to leave their homes.

I work hard to put a positive spin on my situation and most of the days I can. Then there are the times when things hit me like a freight train. That's a discussion for another day.

Jump to this post

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.

REPLY
1 reply
tonyde | @tonyde | 19 hours ago
In reply to @dannoyes "Epileptic seizures are not a choice. I don't wake up and say, wow today wod be..." + (show)
@dannoyes

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.

Jump to this post

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.

REPLY
tonyde | @tonyde | 18 hours ago
In reply to @kb2014 "I am not a victim. I have been seizure free over 11 + years. My paternal..." + (show)
@kb2014

I am not a victim. I have been seizure free over 11 + years. My paternal grandfather had a head injury had epilepsy and after I examined his death certificate he possibly died from SUDEP. I have agency over my life. I decide who and what is safe and healthy for me. I am not perfect but more than able to carry out treatment plans recommended by my doctors. I will say your post is rather offensive to me. I have no more to offer here.

Jump to this post

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!

REPLY
1 reply
kb2014 | @kb2014 | 12 hours ago
In reply to @tonyde "Please don't consider any post as being offensive. A car accident turned me from being productive..." + (show)
@tonyde

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!

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.