>> Tuesday, April 7, 2015
|December Ride to PCH|
for broken jaw.
The one at 8:30am was a doozy too. I was sure he didn't know who I was after it. He looked so lost and so frail. He looked confused. sad and tired. And I thought: I'm tired too buddy. I don't want to be a part of this epilepsy thing anymore. I'm tired of kicking against the status quo, trying to show the world that epilepsy needs more attention all while just trying to get people who LIVE with epilepsy to say: Hey! I have epilepsy. How can we raise awareness and get research grants if you won't step up and say you need help?!
Parents who won't say epilepsy but argue that their child has a seizure disorder and that's 'not the same'. It's not? How is it not? Oh yeah, WebMD told you so:
"Seizure disorder is a general term used to describe any condition in which seizures may be a symptom. Seizure disorder is a general term that it is often used in place of the term 'epilepsy.'"
And there are the people who think that EVERY little thing that is done, is done to upset them, and to make them feel badly. Suck it up buttercup: It's not ALL about you. Stop whining and hiding and blaming everyone else...get over yourself already. If you aren't in there making the decisions, you can NOT complain about the outcome. When you walk away...be done. Don't just stand there lying and stirring the pot. When it comes down to it, I would have NO problem walking away tomorrow. NONE. I would be DONE and I would not bad talk the people that picked up the pieces I left. But I made a promise and I will see it through.
Group after group popping up to support epilepsy and the one group that COULD bring them all together isn't interested in working WITH people but getting them in line. Get a grip folks: Epilepsy sucks and we are ALL in this together, choke back your ego's and see the big picture.
While they are fighting amongst themselves to get noticed, we have NO REAL numbers about epilepsy. We can't even decide what to call epilepsy! For the love! People, it's not that hard: more than one unprovoked seizure. Why are we allowing epilepsy to be quantified by adding other criteria for diagnosis?
If you have seizures EVERY TIME your glucose is low...you would just be Diabetic. Oh, excuse me, a person with Diabetes.
If you have seizures every time you are around strobe lights, they would say you have photosensitive seizures.
If you have seizures every time you go from hot to cold or cold to hot, they might call it stress-induced seizures.
Why NOT call it epilepsy? Because there are factors that CAN be controlled to reduce the likelihood of the seizures? That's a cop out and it fudges the numbers because of fear.
What it really does is set people up to get no services. What do I mean? If you have seizure disorder and can't hold down a job, you will, most likely, apply for government assistance and you will, most likely be told: it sucks to be you. Why? Because seizure disorder is not on their list of diagnosis that qualify. But if you have a diagnosis of epilepsy....they give you the paperwork that you need to fill out or bring in, and you have a MUCH greater chance of getting services.
So while Doctors and Researchers are arguing about what to call epilepsy, people with epilepsy are losing out. Epilepsy is protected under the ADA, seizure disorder is not. One may argue that if they also have X condition then it would be. Ah, yes but it was X condition that qualified, not the seizures.
And I am very tired of this. I have seen thousands of seizures and spent thousands of hours trying to find out why. He has three diagnosis and none of them are the reason he still seizes. We are spending too much damn time arguing and not enough time learning from each other and moving forward. We are begging for money to help and that money is being spent on WHAT exactly? It's not research. And it sure as hell isn't on services to actually HELP people with epilepsy live their lives. But that's another post for another day.
Right now...I'm trying to figure out what is so damn different?