History

THE MONSTER IN MY EAR

On December 31, 1998, I was diagnosed with temporal lobe epilepsy.  I was almost 22 years old, the year that I would be graduating from a sixteen year educational journey.  It all started back in the practice room at the music building of my university campus.  It was the last week of spring quarter.  Everyone was finishing taking their exams and turning in their fine essays and were packing their clothes to return back home for the summer.  I still had a final piano playing and singing test.  I went to the music building with my good friend, Julie.  We went upstairs to the practice rooms and went into different rooms.  I don't remember how long I had practiced for.  Usually, after an hour or so, I would open the door to let the cool, hall air in the room, or I would step out and stretch my neck and arms long enough to hopefully talk to a friendly passerby.  I was almost ready to play my final exam and was pretty confident that I would pass beautifully.  I was getting bored from practicing the same chords over and over.  I sat on the piano bench with my fingers gliding over the keys.  Suddenly, my right ear didn't hear any sounds.  It was as if an invisible, evil mouth hungry for sounds ate its way from my right ear through the center of my head, and into my left ear and left me vulnerable without any senses.  That was the only sensation I could only remember happening to me.  The next thing I remember was being downstairs in the girls bathroom, looking back at a hollow-eyed reflection of myself in the mirror.  I was wiping my temple with a wet paper towel.  I didn't know why my face was bloody.  I thought maybe I had a bloody nose that had gone out of control.  I felt cold, then hot, then cold again.  I felt sick and weak all over my limbs.  I walked down the hall.  No one was around in the music building.  I didn't know what happened.  How did I get here?  What was I doing here?  How come I felt like I was missing something, like perhaps my backpack?  I saw a light in a storage room.  I took a glimpse and saw another friend.  I felt glad all of a sudden that there was someone still left in this empty building.  I knew in the back of my mind, something had gone wrong, but I just couldn't figure out what. 

With one quick glance at my face, my friend asked me what had happened with a worried tone.  I didn't know what to say.  I searched for a reason, but nothing came up. I felt heavy.  I felt like I was chained to the floor.  I couldn't find the strength to move after I sat down.  Suddenly, I felt nauseous. I was going to throw up.  Instead of speaking, I could only summon the strength to frantically gesture to my friend, showing a hand over my mouth and my wide, scared eyes.  He found a half empty Coke cup.  I managed to spit out a sour taste from my dry mouth.  I didn't know why I was sick to my stomach, weak in the head, and in my body limbs.  Suddenly, my friend Julie from upstairs bolted into the room and shouted to me, "We have to take you to the emergency room, NOW!!!" I looked at her quizzically.  "Why?", I asked softly. 

She helped me up to my feet.  I found myself reaching around her neck with my arm for support. Why was I so weak?  I noticed she had my backpack.  Where did she find it?  I wondered in my quiet mind.  She had called her friend to come pick us up at the building parking lot.  In less than 5 minutes, he came to the door.  He gently put his arms under mine and placed me into the passenger seat.  The hospital wasn't far from campus.  The sweet smell of the car made me sicker.  I held the Coke cup in my hands tightly.  Maybe I had just come down with the flu.  Finals week was kind of stressful.  I knew I hadn't been sleeping very much and hadn't been eating a healthy diet.  But what could explain the blood stain on my shirt collar and on my face?  At the ER, a lady in a white uniform sat me down in a wheel chair and whisked me into a room.  A man, which I presumed to be the doctor started to check me from top to bottom, but it was mostly top. 

He said I had hit my head pretty hard. 

 Where?  

 I had a cut above my right eye, where it bled. 

 Why? 

 He said I should lie down for the rest of the evening. 

 What for? 

 Then, he asked me some pretty stupid questions. 

What day is today? What year is it? Who is the President?  And the most stupid question was, "Do you know what your name is?" I looked at the doctor for more than a half a second to see if there was any hint of a joking face before I answered the question.  I laughed a little while he grilled me with these questions.  But I remember my breath caught in my throat.  I realized I had hit my head, lost consciousness, and this was the test that would tell my future from then on.  I panicked just a little for a moment, thinking that I wouldn't be able to answer any correctly.  I quickly calculated in my head.  It was the end of the week in June, only a couple of days before the graduation ceremony.  I sighed with great relief when the doctor smiled and said I passed.  He suggested that I had just fainted and hit my head, probably on the edge of the piano.  But could he explain the part how I ended up downstairs without any memory of opening the heavy, sound-proof door, out of the practice rooms, and walking down the stairs? 

The doctor gave me a prescription for headaches and an excuse paper for my music professor that I shouldn't take any final tests for the week!  Yay! 

I thought for a second, but I still took the test anyway, because I wanted to see the letter A on my report card later. 

I went back to the campus with my friend.  She helped me pack my things from my dorm room and took me back to her place.  Her dorm was having a huge drinking party, but I was too tired to curiously watch people drown themselves in alcohol.  I slept in her bed.  She had to check me every couple of hours, by order of the doctor, in case I faint again.  Uh, how do you faint when you're sleeping? 

The next day, I had a dark doughnut ring around my right eye.  It was a funny sight.  I kind of liked it.  I went to the music building to see if anyone was there, so I could show off my latest, attractive feature.  The janitor who cleaned up my `mess` said there was a pretty big pool of blood on the floor, plus a bunch of other unattractive, smelly secretions.  It must have been puke or saliva.  When one has a seizure, it is common to throw up or spit up saliva.  I didn't tell my parents about my accident until I went home the second day after the accident.  My sister couldn't take her eyes off me, including her camera lenses. 

In the summer that followed, after many trips to the hospital, many check-ups, discussions with my neurologist, an MRI scan of my brain, my doctor told my father in his office that I have epilepsy.  My father had to come with me for the discussions with the doctor because I knew that I wouldn't understand 100 percent of what the doctor was saying.  Now, the problem was how to translate all that discussion into what my mother expected to hear.  She certainly didn't expect to hear that her daughter had developed some sort of seizure disorder.  Her ranting inquisitions went on and on.  How does it develop?  Why did you have to have it as a young 22 year old?  Was it because of something that happened while you were in the womb, still unborn?  Or was it some sort of accident where you may have hit your head very hard?  What was the reason for this disorder?  Why was it happening to you?  It seemed like my mother blamed herself the most for giving birth to someone like myself, having a small kind of learning disorder perhaps, and then now a seizure disorder.  She was so upset.  I couldn't understand why.  I was the one that had to deal with the imperfect brain. Basically, she was so mad that there was no answer as to why this seizure happened.  

From then on, I had to take medicine two times a day to control seizures.  I never really had a second big seizure since the first time.

I still take my medicine. Once or twice, I forgot to take my medicine and later on in the day, I would have a weird sensation that the evil sound-eating monster was entering my right ear again and was working its way through my brain.  On one occasion, I immediately started talking to myself, trying to keep myself awake.  My husband wasn't home from work yet.  I needed him so desperately.  I was getting scared.  I picked up my cell phone, dialed his number, and I told him I may be having a seizure.  He told me to sit down, be calm and said he was coming home right away.  I was starting to feel nauseated.

Instead of naturally heading to the bathroom, I simply opened the balcony door, squatted down and puked right there. Part of my lunch spread across our balcony.  I still had the cell phone tightly held against my ear when I heard the front door open.  My husband had come home! But I had just called him and he wasn't anywhere near home when I talked to him. How could he have made it back so fast?  That was the other thing. When I had a seizure the first time, I lost track of time.  I feel like as if a minute past was days ago, and that present time that I was in had completely stopped and wasn't going forward at all.  I felt like I was stuck in this horrible nightmare and it just wouldn't let me go.  It wouldn't let me out.  I remember calling him but it felt like it was just a minute ago.  I didn't know that 10 minutes had already gone by.  To me, it felt like only one minute had passed after putting down my cell.  It was just a weird sensation altogether.  Sometimes, I have those times when I feel like I'm going deaf, like I'm going to be sick, like I'm going to be caught in a loony time zone.  But I haven't had a full out seizure, where I fall down, hit my head somewhere and my eyes bugger out, and I shudder and shake and foam at the mouth.  I've told my husband in case that ever happens again, just lay me on my side and don't let me bite my tongue or choke on my foam! 

THE MONSTER IN MY EAR STRIKES AGAIN

On the early morning of February 2008, 4 days after my 31st birthday, I had an epileptic attack while still in bed.  My husband had woken up minutes before my attack.  He came back to the bedroom when he instinctively felt something was wrong in the bedroom.  I was producing some odd sounds.  He found me wriggling, and convulsing.  My eyes rolled back into my eyelids, making my face look like death itself.  I made movements that seemed like I was about to bite my tongue off, so he instinctively did a not-so- smart calculation and put his forefinger between by teeth and I chomped on it with frightening force.  He managed to pull it out but I hung on long enough, causing his finger to bruise, as if he had gotten it stuck in an iron clamp.  I wouldn't respond to my husband's calls or touch.  After about 10 minutes of continuous convulsions, he sat by my side until I regained consciousness once again.  I woke up to him sitting at the edge of the bed.  I peered at him with a dazed and curious expression.  He said I had a seizure.  I was puzzled at that, because I had no recollection.  But as I swung my feet over the bed to stand up, and shuffled to the bathroom to do my morning pee, I immediately felt sick and threw up in the toilet instead.   A huge headache banged at my temples and at the top of my head.  I had no energy to put on my clothes, even to walk back to the bedroom.  I managed to fall in a heap onto the living room couch and slept there for another two hours.  After I woke up, I put on my clothes.  As I buttoned up my shirt, I felt like time froze and I was alone in my miserable thoughts.  I had never felt so miserable in my life.  I realized that the time I would have seizure-free days, without ever taking anti-seizure medicine would never come.  I was back to number one again.  In the previous months, I had been visiting my neurologist in a hospital.  He and I discussed my plans about having a baby soon.  After many blood draws to check my medicine level in my blood and brain wave checks, my doctor had given me official permission to get off my anti-seizure meds.  While taking the meds, I had been seizure free for more than two years!  That was good to go!!! I was FREE to get off the meds from now on!!! But I was proven so wrong.  After only one month, being med free, I had my full blown out seizure in my bed that one, cursed morning.  I immediately emailed my family about my experience.  They emailed me back, expressing their genuine concern.  But where I mentally stood, I was past the feeling of depression, meaning I was ready to give up.  My days moved on with mixed colors, all meshed into one ugly painting.  My daily rhythm of life was screwed up.  I became very bitter against my family.  How could they have not bothered to give me one single phone call?  That was what I really needed.   They knew that I was getting ready to have a child.  They knew how serious the issue of having a child was for a epileptic mom.  I was expecting them to call me with concern.  The sadder I got, the more bitter I got toward them.  It was an endless cycle.  The spring months in Japan that year was not much of a spring for me, but I knew I had to go forward with life.  Two years later after that dreaded day, I got pregnant and delivered a healthy boy last year.  Believing in positive thoughts and having a supportive friend who, herself, is epileptic and had a healthy boy, gave me strength to go on through the pregnancy, believing that I could still deliver a healthy boy.  My husband helped me all along the way with a lot of support and concern.  Even in down times, positive thoughts really helped in the long run.