Saturday, March 17, 2012

Aural Fear (My experience with Seizures)


Write; write about what hasn't been written.  I would like this wonderful repertoire of words to freely flow to fingers from mind, but they aren’t there.  Instead I sit; a timeline due and nothing to put to paper.  How did I get to this point?  How did I go from words that without a care could be penned to none at all?

It wasn't always this way.  There was a time, when I sat day after day pounding keys and weaving stories that people of all ages read.  Before the accident.  Before a seizure took a small part of my mind and made it useless. Something no one should have to live with once let alone multiple times.  Yet that is what happened.  No warning that life would change suddenly. One day an overworked middle aged woman without little care, the next each moment steeped with fear.

Just off work from scripting and software testing. Depending on the depth of the project; great work but long hours.  1:00 p.m. on Wednesdays is my Friday as others would see it if they lived my schedule.  A baby shower was coming up, and a stop at Target was needed. While deciding my purchase, my vision blurred and thoughts raced.  I refocused, shook my head and thought to myself "I haven't eaten today I simply need to get some sugar and sustenance to balance out.”

My footsteps slowed as I made my way to the fruit.  I would peel a banana and take the heat for theft.  No longer did I know exactly what I was doing.  It seemed slow motion-my thoughts were separated, I couldn't put together words or meanings and my thinking was, well, missing for lack of a better word. Where was I going again?  I stood there. I could feel my eyes roll into the back of my head. I grabbed the cold metal edge of a fruit bin.  I fought the rolling of my eyes trying to bring them forward, heightened fear as each second passed by.  What was happening?  The lights were bright, brighter than I'd ever seen.  Fuzzy movements were around me, but I couldn't tell what they were.  Logic passed.  Light, light, light. Somehow during the confusion I knew falling on a hard floor was dangerous.  I dropped to my knees.  As if kicked in the face, my body flew back, my head hitting the hard concrete-based tile first before my body followed.  Eyes strained their way backwards one last time.  I could feel the muscles in my body seizing and my last, final thought was “shit that hurt”.

There is no way to express how this truly feels.  No bodily control. When a seizure comes on, no matter how much you fight, your body takes over and has a mind of its own.  You know feelings are there, and what will happen but you don't know how you know since it never happened before. This is called an ‘aural’ state. I wish that was it--that I woke up and all was well with the world.  To be honest, 'well with the world' has never fully been experienced since then.

I recall being walked by a small, older Mexican woman and a blonde woman of average height. We headed to a chair that sat in the Starbucks portion of Target. Gingerly to wooden chairs in straight backed positions made of inflexible pine around tables of the same.

Why are strangers so kind to me?  I couldn't remember what had occurred, but here was this woman rubbing and patting my back and making me feel safe like all was well.  I smiled an insane smile while glancing back and forth at the two faces.  They had this look in their eyes. I had no idea what it meant at the time. Now I realize it was pity, sympathy, and maybe even fear from dealing with a stranger flopping around the floor like a fish out of water and no ability to stop.  Instead they watched helplessly and wondered when it would end.

As we continued sitting in the Starbucks area, EMT technicians entered the store.  Wow, I thought, someone must have gotten hurt. To my great surprise they walked up to me. Why me?  I had no idea.  I was still sitting, smiling wildly at all passersby, feeling like royalty with all the attention being offered me not understanding that the attention was likely morbid curiosity.

An EMT said to me 'ma'am, are you ok'?  I gave him the same stupid stare I was giving everyone else. Stupid because in one respect I knew what the words meant but they weren't properly assimilated by my brain.  As dumb looks continued to emanate from my face, the two EMT's explained to me that we were going to the hospital.  I wasn't sick, yet I had no energy to argue.  My fully functioning thought process was not there.  So much so, that it didn't even cross my mind to be concerned.

The Mexican lady stepped away and an EMT came to either side of me, gently taking my upper arms and getting me to my feet.  I looked at the gurney placed in front of me.  They lay me down, placed a white sheet over me and put two belts across me; one mid thigh and one below my breastbone.  I have to admit that I childishly thought the ride was fun and grinned.  Then fear crossed my mind as they lifted the gurney into the ambulance.  It was dark and crowded. There were wires and baggies and meds everywhere.  Where were they taking me again?  Oh yes, the hospital I remember someone said this to me.  

Fragmented thoughts flooded my mind, flashes of walking, the feeling of falling, even further back in the day working and making decisions. Vague flashes of memory made me feel anxious and my eyes welled with tears.   The EMT inside the truck was a manly woman.  She was firm but sweet and I was thankful that she made me feel comfortable.   Suddenly without warning, tears poured down my face, and shakes took over my body.   The type of shakes you have when you've been in the cold for too long.   Teeth shattering, jaw clenching, hand shaking type of shakes.   The EMT patted my hand with her own rough, meaty hand.   I don't know how she managed, but with one hand patting she slid a needle into my vein above my thumb with her other hand.   With hiccupping sobs I tried to sit up. Panic now set in and the tiny space of the ambulance was creating hysteria that grew by leaps and bounds.  Every time I had seen someone on TV react adversely, I rolled my eyes, clucked my tongue and wondered ‘what is their problem?' Now I reacted in the same manner with no regard to what others might think of my behavior.   I still couldn't form complete thoughts but fragments flashed in and out. As the EMT continued to pat my hand she eyed my erratic vitals. I continued to breathe heavily telling myself don't cry, don't cry, but tears slowly made their way down my cheeks.  

The ambulance pulled into the semi-circle drive at the hospital. I was rolled into a room. Thankfully the tears subsided and the anxiety, although still present had reduced enough to be tolerable.  After a few minutes a nurse with beautiful cocoa colored skin and an authoritative presence to counteract her 5 ft body, came in and asked me to assist her to get my clothes off and into a gown.   My favorite part of the experience to this point was a warm cotton blanket they laid across the bottom half of my legs. I was finally comfortable and could feel myself relaxing a bit in the safety of the room twice the size of the ambulance that did not send me to near claustrophobic mania.  I no longer felt disoriented although if I thought more than a couple minutes into the past or the future, confusion quickly returned. I was exhausted, more exhausted than I’ve been in a long time.

Fifteen minutes later a professional man with doctor attached to the left pocket of his green surgical scrubs walked into the room.   He had a clip board, and looked young and handsome.   I was thankful the goofy grin was no longer plastering my face, and looked directly at him waiting for him to speak.   He said 'ma'am, I'm the attending physician today (he included his name but for the life of me I couldn't tell you what it was). Based on the witnesses at the store, and the report from the EMT's, you had a grand mal seizure that lasted approximately four minutes and is considered major.   Have you had one before?' I replied that I had not had one before and wasn’t sure what one was.   Then I lobbed off a group of questions, how did it happen, will it happen again, what do I do, and on and on they went. How I came up with questions when I couldn’t recall other events eluded me.   Doc replied 'we don't know why they occur, they happen for any number of reasons, sudden drug withdrawal, change in brain activity, there at birth, we don't know.’   I needed something definitive.  I needed to KNOW.
            A cat scan was performed and no aneurysm noted - good news.   I stayed a couple more hours, then released.   My driver’s license was restricted and I couldn’t drive for six months.   This created more questions: how would I get to work, how would I go shopping and what would I do?  I'd never considered any of these questions before and didn’t appreciate having to think of them now.   I phoned my boss and my boss’s boss to get me.   Yes, I admit these two men are the closest thing I have to friends.   I'm not social by nature, so this was it.   I am thankful I at least had them. They came to the room to pick me up, and I had the gall to ask to take one of the blankets with me.   They said yes, and to this day, I enjoy that blanket.

Once home and in bed, I tried to figure out what had transpired.   To date I can’t remember everything that happened.   I still wake up every morning wondering, “Will I have another seizure today?   Will I be in public and just drop down and become a spectacle for others to gawk at?   Or will this be the day that I fall in the wrong direction ending my life? Will it happen at work and colleagues then see my weakness?”

I found that a prescribed drug I used, when suddenly stopped, could have this side effect.   Said like some small inconvenience.   I wonder if they realize that it altered my life, my personality and how I interact.   I no longer blithely walk in public but speak silent warnings the entire time.   Don't look directly at lights, stay off tile, be near carpeting, avoid stairwells, and so on.   Outwardly, no one is aware that this diatribe of cautions flow through the same brain that two months back let me down.  

If I go 48 months without seizing, odds of my having another seizure equals those that have never had one, so I count days, weeks, and months, waiting for that 48 and final month to pass.  I fiercely argue going on a drug they want me to use that has side effects and although it may stop future seizures will alternatively cause other concerns.  So I fight this battle naturally.

Should I go the doctors’ way, another pill that may be dangerous but allows me to keep some independence?   Seems like a no-brainer; just take the pills.  In fact, if it was pills that got me here. I’m not willing to let them take me somewhere else.  If another seizure comes within four years, it won’t be my choice, but for now it is, and I choose to fight.


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