We as epilepsy advocates can’t be discouraged when we don’t get the help or the support we want. We have to work for it, and work hard. NOT EVERYONE UNDERSTANDS EPILEPSY OR EVEN KNOWS WHAT IT IS! So, it’s our job to teach them what the needs are and what programs are available.
Heading back to work really got me thinking about ability and how able I am to manage my Epilepsy, manage my household, take care of a 5-year-old and…work.
Being a caregiver, whether you are talking about Epilepsy or anything else, is one of the toughest jobs on the planet. Really.
I live in constant fear of when the next seizure will strike; where I’ll be when it does strike and who will be with me. I’m not always public with my fears, but they are incredibly distracting and controlling. Many times, it’s so easy to keep them bottled up.
Having the courage to identify yourself with not just the negative, but mainly the positive is a gift. And, it’s something I’ve worked hard to achieve. I’m determined to not be labeled…
Memory loss due to my seizures is something I know I will always struggle with, and the fact that it will most likely worsen is quite daunting, but I’m thankful for my close friends and family who can tolerate and console me.
You all…or WE…should be very proud of our efforts to promote Epilepsy awareness. And, I know it’s not over yet. As someone who is always watching the process, I have to wonder: how successful have we been in moving the needle?
The fact of the matter is, every state has a law that applies to drivers who have seizures. It’s up to our doctors to make sure we are abiding those laws, but it’s also up to those of us who live with Epilepsy to adhere to them.
So here we are…National Epilepsy Awareness Month; 30 days in which we have a platform to push our message of hope, support and advocacy.
When exactly do you tell a child about his or her epilepsy and everything that comes along with it? Granted he knows when he’s not feeling well, but as a young child, can he understand what it is that’s making him sick?