November: it's become the easiest time to become vocal about something that's destroyed my life. Yet no matter what I still don't like talking about it? Weird I know.
November is Epilepsy Awareness Month. You know, just like October is breast Cancer is Breast Cancer Awareness Month and Everyone wears pink in honor of those who fought and are fighting those awful disease. I wore it for my friend Jess's mom. It's Just like September for childhood Cancer awareness month- where you where Gold or Yellow or have the color up. I wore it for my little friend Ava. She lost her Battle to Brain cancer and when I got that call I lost it. She was only 6 years old. Well you see- I wear purple. Not just for me. But for my superhero Luke. My friend Kalissa, Logan, Morgan, and Never forget the AJO movement.
You see- there's A lot to epilepsy that you don't know about. There's different types. There's also different types of seizures. There's a ton of different type of medications. There's different treatments for different people. Some work some don't. Some epilepsy is treatable some isn't. Some are hard to treat, some all you need is more sleep- not even a pill. Some- you need 4 to 5 seizure medications, a special diet, balanced sleep, certain things you can't do. It completely alters your life. Not only your life but those around you.
I'm writing this because Epilepsy has this certain Darkness, this Certain stigma surrounding it. Its contagious. It's this. We're afraid you'll this. Or your this.
I'm fighting for my Job, I'm fighting to just feel better, I'm fighting for normalcy. I'm fighting for a life I once had before. I'm realizing I may never have it. This month though I'm fighting to shed light on this stupid disorder.
I have Epilepsy. A lot of people know this. I was diagnosed at 15. Over the past two years it worsened. I've gone from being on one drug to four or five at a time. To now being on 3.
At the age of 21, I worked a full time Job in management. I had just bought a car. I had my own apartment. ( yes I was able to drive at the time after years of not being able too) a few months after getting my car- I wake up on the floor at work surrounded by paramedics and the fire department. A few weeks later it happened again only 911 wasn't called I was at home I woke up with a mouth full of blood. Or falling backwards in a post office and a stranger catching you and waking up surrounded by the paramedics and fire department in the hospital with cords and tubes everywhere that one was the memorable one.
I've lost that Job, my apartment, my car, my license. I've been bouncing around place to place because a: my health and the health system I am in. b: I lose my job again. Nobody wants to keep someone who has appointments all the time and has to request off and has ER visit quite frequently.
I was living the life. Do you have any idea what it's like to have friends to be able to come over and hang out and do what you want when ever you in the privacy of your own home? Then to have it all ripped away and to be totally dependent on everyone on around you? To still be that sick girl? I had people take me in. I had to switch in an out a few times. People felt bad for me cause I was the "sick" girl. I don't have a solid family. I know they love me- but they aren't here.
I literally lost everything. My Epilepsy destroyed my life.
This past month my seizures started becoming more controlled. But I found I was having more side effects from the medications and now awaiting what's next.
And I'm losing my Job.
But what I've Gained is Knowledge! I've learned. How people view me. How many people see me as a person. Some people suck. Some people are the most Gracious Human Beings Ever. I have help from places I would
never imagined. I learned its expensive too!
I've met people in the same battle who have encouraged me. And vice versa. We can understand each other. We try to be there for each other as we can, because we know what this battle brings. When I hear about Luke who is 5, going through crap with Epilepsy, my heart breaks. or Logan who is 2 who has a severe form of epilepsy- it gives me no room to complain. and Kalissa and I can Talk for hours on the phone because we understand each other. Then there's Morgan- she Lost her sister to Epilepsy. She stands up for Epilepsy through everything.
More people die a year from Epilepsy than breast cancer. Epilepsy is one of the most misunderstood neurological disorders. Statistics speak for this crap.
Epilepsy is scary. I get scared. Im scared. But then I see the 5 year old, and 2 year old, go through this- I have to be brave. Lee Ann, Luke's mom,gives me so much strength and Hope. Epilepsy is needs light- it needs truth. It's not just a seizure. Its so much more. It needs more. It screws things up. It wrecks lives and families.
I have amazing friends. I'm learning this. I don't give up. I'm so incredibly thankful they are all here.
But if it weren't for them I don't know where I'd be or what I'd be.
