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Rated: 13+ · Non-fiction · Tragedy · #1057888
My sister died of epilepsy. I felt like sharing the experience, however painful.
    My sister died soon after my ninth birthday.  She was a year younger than me, tall for her age, with long, straight brown hair.  She was a true innocent, in the sense that common corruptions did not contaminate her.  Where I might swipe candy, my sister was not capable of such deceit.  She could not tell a lie, even when I worked hard to convince her it was in our best interest.  I, as the elder, could talk her into many things, but she had a moral barrier that withstood my most devious efforts.  There was an iron will there beneath her sweet exterior.  I think she would have been an amazing adult.

    I remember one incident well.  We lived in a second-story apartment, with stairs leading up to the large outdoor patio where the front door was.  The very edges of the patio continued all the way around the building, a four-inch strip of concrete that visually—and I suppose the designer thought aesthetically—separated the first and second levels.  I, in the infinite confidence of youth, decided to walk that ledge.  My sister naturally followed.

    I don’t think we ever came close to falling; I have no memories of feeling in danger.  My mother came running out a few seconds after we completed the circuit.  She told me later that she’d heard us talking right outside the kitchen window and had come close to panicking when it had occurred to her that there was no way we could have been level with the kitchen window except for that ledge. 

    My mother, a woman who excels at thinking on her feet, did not panic.  She knew that if she made us nervous, we'd fall.  And so she waited until we were safe, undoubtedly praying for her heart to survive the stress simply so she could have adequate time to punish us.  I don’t remember the punishment, but I do remember her face when she rushed out.  Looking back, I think that defines love: suffering agony to protect the ones you love.

    Getting back to my sister....I remember many people thought we were twins.  We looked a bit alike and often dressed the same for fun.  We had wonderful times together in all the ways sisters are supposed to.

    Then came the day she told my mother that something was wrong.  I didn’t hear about this at the time; it was years later that my mother told me Bekah had spoken to her.  My sister had complained that her arm had started shaking and that she couldn’t stop it.  My mother had no idea what she was talking about and, as there were no witnesses, chalked it up to an active imagination.  This continued for a few months.  But she wasn't imagining it.

    I was the first witness.  We were tired, it was late at night and we were trying to get to sleep in our van while our parents were inside at a church member meeting.  My sister was seven at the time and I was eight. 

    I was tired and irritable, and just as I started to doze off, she called me.  I ignored her, pretending to already be asleep.  Jenna, she called again.  I finally yelled, What?!  She said she didn’t feel well.  Go to sleep, I told her, it’s late. 

    The next thing I felt was a bump on the back of my seat.  I got upset and jumped up to yell at her, looking behind me to her seat.  She was all the way on the floor, she had fallen down where your feet go.  That was the first time I knew something was wrong.

    I opened the door of the van to reach her, the aisle was too narrow for me to crouch down and help her.  I thought at first that she’d just fallen and was stuck, because she wasn’t getting up but she was crying.  Then I saw her arm, wrapped tight around the steel leg of the van seat.  It was shaking so fast and so hard, I could hear the thunking of her bone as her arm hit the metal.  I felt fear, fast and hard, right in my gut.  Why was she shaking her arm like that?  Stop it, I told her, afraid and angry at the same time, stop shaking your arm like that!

    She didn’t answer, she just kept crying and her arm just kept shaking.  I started pulling on it, trying to unwrap it from the seat leg, but it was so tight, it wouldn’t move.  I pulled as hard as I could and it wouldn’t open, how could she be so strong? 

    And then it stopped, suddenly and without any apparent reason.  Her arm went limp and she lay back, exhausted, frightened, and crying.  I tried asking her if she was okay, but I think she was too tired to hear me. 

    A couple of minutes later, she pulled herself up and got out of the van.  I’ve got to tell Mom, she said.  I ran after her, feeling guilty that I hadn’t thought to get someone to help her.  As we went into the house, I looked down at her arm and noticed how red it was. 

    Once Mom heard the story from me, they decided to take Bekah to a doctor.  After a bunch of tests and dozens of needles, the diagnosis came in: epilepsy. 

    It’s a morbid word, if you ask me.  Maybe more so for my family, but when I hear it, I hear death.  I think my family has earned the right to fear and hate that word.

    Three months after the diagnosis, three brutal months of daily injections or blood draws, medicines with side effects that ran the gamut from constipation and hemorrhoids to reading and concentration problems, my parents decided to take her to New York.  They didn’t hope for a miracle, they just wanted better treatment.  There was a hospital in New York that specialized in epilepsy and news of a new drug gave them a bit more hope.  And, since the drugs she’d been on were causing worse symptoms than the seizures, and the seizures hadn’t really stopped either, it couldn’t hurt to try.

    We arrived by plane June 1st.  Our parents had friends in New York that put us up, they had a room upstairs with a king-sized waterbed.  I have to wonder how it’s possible that I remember the waterbed, and I remember riding bikes with those friends’ kids, and I remember picking flowers, but I don’t remember my sister leaving for the hospital. 

    She stayed there until the 6th, when they brought her home on the new drug.  My mother took me aside before they brought her home to warn me.  Mom explained that they’d started Bekah on a new medicine that was controlling the epilepsy, but that it made Bekah very tired and she wouldn't be able to talk or play for a while.  When they did bring her home, she was barely conscious, it was like looking at someone asleep with their eyes open.  She went right to bed and didn’t wake up until the next day.  And when she did wake up, she started throwing up.

    Mom and Dad rushed her back to the hospital, where the doctor in charge of her case wasn’t in.  They had to admit her through the emergency room and the diagnosis upon admittance was dehydration.  Someone must have decided that my parents were being over-anxious and that they’re baby probably just had a bug of some sort, so for good measure they dosed her with penicillin.  Someone forgot to ask if she was allergic.  She died thirty minutes later.

    I asked my mother once why they never sued the hospital.  She looked at me for a minute, then said, Would it have brought her back?  And she shut herself in her room for a while as she sometimes did.

    It’s been more than twenty years since this all happened.  I myself have children now.  It’s said that time heals all wounds.  I don’t think that’s true, maybe it's just that we've learned to function without her.  We still miss her just as much twenty years later, and we still cry for her.  And my mother still shuts herself into her room when she thinks of Bekah. 

    The thought of ever losing my own children…I feel drowned in despair.  I cannot see any life beyond such a loss. 

    My mother had nicknames for us when we were kids.  I was Princess, and I know I lived up to the name.  I was always the one dressing up, and I was the bossy one, and I always knew everything about anything.  Maybe mothers know things, beyond common sense, reality, intelligence, and truth.  My sister’s nickname was Angel. 
© Copyright 2006 JenMichael (jenmichael at Writing.Com). All rights reserved.
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