I’m sure that you have read through my past blog posts that I was diagnosed with Epilepsy when I was 29.
My condition went un-noticed for many years and my symptoms and signs were perceived as nothing more then lack of sleep and low blood pressure….
I’m going to tell you my story and of my struggles and I tell it not because I want your pity, nor need it, but for those who will relate to it and the ways people treat you after such a diagnosis. It changes the way people view you and the lack of respect that you are shown there after will effect everything.
I was a little girl and at the age of 8 I used to see colored monsters of static. I called them Static monsters because that is what they looked like to me. I would hear a buzzing sound and everything would get darker and then the monsters would appear, large face shaped creatures with eyes. There were different colors and would surround my bed at night. I remember my dad came in to check on me and I told him and his response was, “There are no such thing as monsters. Now go to sleep.”
Time went on as it always does and I continued to see different things. Scary to a child my age, so much so.. I was afraid to go to the bathroom at night in fear of seeing them.
Every 8 years I heard the static noise growing up and it made me sick to my stomach. I didn’t understand it.
I fainted for the first time when I was 9 and my mom was changing my earing. I was taken to the emergency room where the doctors suggested it was probably a bit of asthma and recommended nothing for it. I was passed off and forgotten.
When I was 11 I was in my classroom in school and I blacked out and fell to the concrete floor where I hit my head. I told the teacher when I came to and she claimed I was lying and told me to go back to my seat until the other students told her it was true and I became faint again and she caught me and took me to the nurses office where it was discovered my blood pressure was very low. it was passed off as lack of eating and I was sent home to rest.
As I got into my teens I began seeing more visual disturbances and could see future events that came to pass so people claimed I was psychic and I was called a witch during high school. I was bullied and kids through glass at me when they drove by me. One time I was locked in a classroom and thrown paper balls at and called names and told I was a messenger of God.. Kids can be cruel.
I spent a lot of time alone and talking to the stars at night, to God who I grew to believe in. Which was a surprise to my family since no one in my family believed in God until I started talking about it more and predicting things that came to pass. I felt different and like I didn’t fit in.
When I was 16 I started getting tummy aches all the time and had stomach x-rays done trying to figure out the cause of it, which was just labelled as nervousness. My hands would get tremors and shake like they do with low blood sugar and I was tested for diabetes which came back clean. I would have drops where I would lose the ability to walk or move my legs for a few minutes.
Such things just kept recurring. When I was 24 I was sitting at my computer when I collapsed and fell out of my chair and when I came to I had trouble breathing. My husband at the time called 911 and I kept holding my neck and didn’t understand why, I felt confused and I remember the paramedic checking me out and asking if I had a history of seizures and I responded no because it was never even suggested before.
Life went on and I didn’t have many incidences for awhile after that until I was 27. I was divorced and had been through several abusive relationships. I was with a meth head who treated me pretty poorly and with all the stress I guess something went terribly wrong and I started convulsing and blacking out. I was rushed to the hospital where a doctor finally decided that a ct and eeg should be done.
I was sent home before the results were back and I remember I was given a heart monitor to wear for a week which results came back fine.
The Doctors were convinced it wasn’t my brain or my heart or anything at that time.
I felt like everything didn’t make any sense and I wondered why no one could help me and tell me what was wrong with me and how to make it stop.
Then the phone call came… I was sitting at the kitchen table drawing a picture of a boy when my step father called me and told me my nephew was missing and I felt this ball of doom in my gut. Something was terribly wrong. The feeling swirled around me and I couldn’t rid myself of it. I waited by the phone for anything. Then the phone call came, it was my step dad again.
That’s when he broke the news to me. The dreadful news that my nephew had died. he was 16. He committed suicide. I fell into blackness and had a seizure that wouldn’t stop. I remember fading in and out and suddenly the paramedics were surrounding me and checking me out and put me on a stretcher. My mom was there and I was brought into the emergency and there was this one lady paramedic with me. She squeezed my hand when I told her about my nephew in tears.
I was given meds to stop the seizures and had another eeg done and that’s when it showed I have epilepsy and it was in my frontal lobes. Mostly my left and a little in my right. I was kept in the hospital for a week and put on meds.
It finally was solved. The mystery was over… but the battle wasn’t.
I went on meds after meds after meds that made me forget who I was sometimes… it was like living in a dream. Seizure after seizure… life was unbearable and everyone around me was terrified to be near me in fear I’d have another.
Now I can say I do not have many seizures but they do still exist and probably always will.
Every relationship I had treated me like a pain in the ass. My seizures cause half consciousness so I can kind of see what’s going on around me and hear and my partner would leave me alone. Ignore me..
You see.. people fear what they don’t understand and for me having epilepsy has not only been a battle I’ve faced blindly growing up, but it has also become a reason to be treated more different and unheard. I lost friends… I attracted abusive men who don’t acknowledge my struggles I face because I learned the hard way that I have to take care of myself and act like it’s all fine.
Yes I am a warrior because of it, but it would be really nice to not have to fight this battle all alone. It would be nice to have a friend and it would be nice to have someone sit with me when I am in darkness of a seizure.
Living with Epilepsy is life changing and it has a beauty to it as well as a sadness. On the one hand it’s completely awful because of how I’m treated and on the other I finally understand what I have felt and experienced through my life and can finally overcome it and accept it. I can finally bring peace to my mind about it and battle it. I fight everyday, some days are worse then others and I can’t really talk to anyone about it because when I do there is no compassion shown for it, instead it’s me seeking attention. Until I fall to the ground.
I don’t know if anyone else with Epilepsy has experienced what I have and I hope to God that they haven’t but I hope that my story can help in some way.
Thing that I want to tell you is… “You are not alone here and even when you feel like no one understands or knows what your going through. When life seems unbearable and like you can’t go on. When you feel like no one around you shows any compassion for you except a few because their family, know that you are not alone. There are many of us warriors facing the same battles everyday and despite what anyone tries to tell you, you are capable of anything and can still do what you love and are passionate about despite this condition. You can overcome it and I learned that will power will get you through a lot. Keep on braving the storm, keep on fighting and keep on loving yourself and know that in time you will find someone who supports you, loves you and gives you the kind of compassion you need. It starts with you.
We are warriors
I may not have what I need now, but I have hope because as a warrior we know hope is everything.
Never stop fighting!