Friday, April 19, 2013

A brain that doesn't quite work.

Something is wrong and I can’t seem to pinpoint what it is. If you've been here before, you know I've been dealing with epilepsy for years. It is scary and it seems, at least to me, to be changing. Perhaps it’s the darkness before the light in the discovery and end of my battle. Perhaps it’s something else I have yet to identify. Right now, I’m scared but optimistic.

This past week it has been unbelievably difficult to get my thoughts in order. The more time that passes the more blurry my thoughts and memories become. When I try to put it into words the proper structure eludes me. I’m somewhat convinced I’m going to die. We’re all going to die but I keep getting this feeling it will be soon. This isn't new so don’t worry. I had this feeling all the time back when the epilepsy was new.  In the past years I got over it but something changed this week. I remembered something. I remembered just a hint of something that should probably be comforting but more than anything keeps me from wanting to close my eyes at night.

Friday I felt strange but wasn't sure why. I felt shitty and nauseous.  I got on the train and headed downtown to see my boyfriend as we had planned.  I was only one stop from his apartment but had to get out of the train. I felt disoriented and panicked. I was hyperventilating but trying to pull myself together in order to take the train one last stop. I’m not sure how long this went on but my best guess is something like twenty minutes.  When I finally did make it that last stop I got out of the train and made it out to the street where I was able to make a phone call. Luckily my boyfriend answered so I asked him to come find me. Another fifteen minutes or so passed where I sobbed and shook crouched next to a building at the subway entrance. I was too afraid to walk anywhere. When he showed up I calmed down pretty quickly. That’s all I remember.

Saturday I went to rehearsal and then home because I didn't feel good again. Overall it was uneventful.  

Sunday I spent the whole day in the fetal position with the worst cramps I have ever had in my life. Now, let’s rewind for a moment. I shouldn't be getting cramps. Over a month ago I discovered my epilepsy might be related to my menstrual cycle. Catamenial epilepsy is actually very common and after documentation of my seizures and discussions with my doctors we changed my birth control so that I would no longer have a cycle and never go off hormones. Clearly this didn't work.  All day Sunday I was in pain. I knew something was wrong. Then the bleeding started.

Monday morning at 2am I remember sitting up in my bed. I remember my arm going up and I had no control over it so I knew a seizure was coming. I remember thinking that I was falling forward towards the foot of my bed. I was afraid I would throw myself off because I have an outlet with various plugs right there. One of which is broken. I was afraid to get my face caught in it while seizing. I remember I could feel that I was still on something soft so I knew I didn't leave the bed. The fear was still there. I remember pain. The feeling of electrocution all over. Then the sound that is similar to speakers blowing out in your ears. This is all normal.  This is all terrifying every time but I remember it every time.

This time I remember something new.
I…. I really don’t know how to describe this at all and I’m not fully convinced I should try. Basically the new element to add to what is already a terrifying event is that someone talks to me. In the moment it’s familiar and comforting. I am completely without doubt. This time I remember it a little bit but frankly the details are so foggy I’m not sure what is true. I knew I was alone in my apartment and when the voice came through the buzzing to comfort me and let me know I was safe and not alone I actually remember thinking “How do I forget about this every time?” I know I always say to myself “It’s okay, you’re okay, just pass out.” This is different though. This is a full conversation I had with someone I feel intense trust towards. I can’t tell you word for word what was said but I have glimpses of memory and feeling.

It’s a masculine voice. If it’s myself I’m talking to, I feel intense love for myself. I trust it. I consider them to be much wiser than me. I immediately recognize them and know it’s familiar. I think they are only there to comfort me but they take the opportunity to talk with me.  I think I might finally be going completely insane.  I remember being told something was going to happen that day near me but not too me and everything was going to be okay. I didn't need to worry. I like being with them. 

So there is my admission. I have no idea what it means. I don’t consider myself a religious person. I understand that when people go through traumatic experiences you start to hear or believe things. I don’t know what any of this is but I’m not going to forget it. Take it for what you will.


I'm With Stupid said...

This is really incredible. I don't really know what to say or think about this. I wish I knew anything about these types of things and could help. I'm sure someone somewhere does. I'm off to the Google machine to see what I can find.


LL said...


I wish I was closer darlin', but alas...

I say don't try to figure it out. Just embrace it like you already have. He's there to comfort you and it seems to work, so... take the comfort and don't look the gift horse in the mouth.

BTW, do you have any allergies that could be setting this off?

Gary's third pottery blog said...

I am willing to believe anything, and I hope you and the doctor can figure it out. You are quite awesome, and the last thing you deserve is sh!t of any kind in your life.

Karen (formerly kcinnova) said...

Knight, I'm so sorry that you are having to go through this medical/hormonal sh!tstorm. Honestly, you are an incredibly strong woman to be dealing with this illness. (I'm no doctor but it sounds like a panic attack on the train.)
And while I don't like to be called religious (because it has such negative connotations), I am a Christian who believes that God speaks Love into the world and into each of our lives. To have a voice of comfort and love in the midst of such a horrific experience... well, that is perfectly believable to me.

Knight said...

Jay- Thanks for the note. I started Googling after I posted and found out it is kind of common but then went to far and decided I have schizophrenia. It is incredible to research though.

LL- I actually felt that smooch. Thank you! Perhaps you are right. Perhaps I should leave it alone. We don't think it is allergies but it is proving to be hormonal.

Gary- Thank you so much. I just don't like that I'm risking my life each time a Grand Mal Seizure takes place. Otherwise I could deal with the pain.

Karen- It was a panic attack. I used to have them constantly when I first developed epilepsy. I've got to say, wherever the voice comes from, I'm so thankful to have it there.