Showing posts with label childhood seizures. Show all posts
Showing posts with label childhood seizures. Show all posts

Monday, 26 August 2013

Episode 2


It was a bright sunlit day in Manila.  All 35 of us -  shiny, happy, chattering 6 year olds had just finished the reciting our allegiance to the nation and morning prayers and ran straight into our home room.   Mrs. Silverio, was the object of our affections at that time - equally our mother as she was our mentor for the morning.  Each and every morning we waited with bated breath to find out what she had in store for us. When she read to us,  she was captivating -  the sunlight through the window seemed like a spotlight and for 20 minutes, all the giggling stopped and we were all transported.  Did the sky really fall on Chicken Little?  We were thrilled when it was our turn to choose the book to be read.  And when it was time for art - oh the colors we all discovered together!  Furiously we scribbled with our pastels and crayons.  Each day, there was the thrill of discovery - and achievement.  In our pint-scaled classrooms with mint green desks and cubby holes, our art peppered the walls and made the room our home. 

In those days,  there were no rules about not bringing toys to school -  we all brought our own companions with us to class - just in case, that day we needed an extra friend.  My companion of the moment, was a little grey elephant named after my best friend, Suzie.  So the three of us would make a happy circle when we played jackstones --- and at recess, we would all run out to the playground taking turns at the swings seeing who could swing higher, or jump on the merry go round whirling faster and faster. 

Prep in St. Scholastica's College Manila. That's me
 with the only popsicle in the picture
And then, a shrill whistle blew.  We knew it was time to go back in for lessons. We all settled down, and after a while we were all raising our arms excitedly.  Then there was a loud groan in the room.  And a heavy thud.  It was me.  I apparently fainted in class -  slumped across the desk.  My classmates were all shocked into silence.  At first they were laughing thinking I was making funny noises.  Then when Suzie noticed I wasn’t moving,  she cried out she told me later. And Mrs. Silverio saw me then  -  pale and my forehead glistening with cold sweat.  She lifted me in her arms and ran, carrying me across the school playground, to the school nurse.  Alarms were raised and my mother was called in from the College Department where she taught.  When I came to, I saw the worried faces of Mrs. Silverio, my mother and her friends.  I looked up into faces of people I loved and felt safe.  For all intents and purposes, the school campus where I ran around, where the nuns knew me on sight, and where my mother taught felt like a second home.  No harm could come to me.  

This was not the last time I would have a seizure in school.  As a six year old, I don’t think I truly understood what happened to me.  Just that it was a hot day and I fainted. It was easy to explain away.  I rested for a few days and I came back, with my elephant, and resumed my playground activities.  Life resumed.  

Later,  when I was in 8th grade, it was a different story.  

By the time I was in 8th grade, I was living in Singapore and had been for the last 3 years.  I was attending Singapore American School (SAS)- in a predominantly American school - where most of the students either played football or were cheerleaders -  it was important to fit in.  Unfortunately it wasn’t that easy.  I had just moved from Manila, having gone to a convent school for quite some time, I was unused to some of the social conventions.  And I wasn’t allowed to participate in sports -  one of the many things I could not do since I had psycho-motor seizures (I would only find out that what I had was epilepsy when I was 15, a few years later - such was the social stigma of the word).  So, i had decided to go focus on academics, choir and student government.  I was the only one in my group who wasn’t on the cheerleading squad - but I did own a bulldog, so I took care of the mascot for one of the football teams which wasn’t so bad, except that was the losing team. 

What made school so enjoyable - was the variety of things we learned, when we were in Grade 5, in Social Studies we were taught to balance a checkbook and had phantom stock portfolios.  In Grade 7,  I remember researching about Jim Jones and the Kool Aid incident as well as building a replica of Jamestown (that’s how American the curriculum was).  On the other hand, I began learning Spanish in 6th grade from a Basque woman who taught us by making us learn Spanish recipes and making us create menus. Conjugation had never been more fun.  And literature was experienced.  When we read Anne Frank,  our assignment was to spend the weekend locked in our bedrooms with a stash of food - cut off from TV with a few books and a journal. No telephones. No family.  Our teacher wanted us to experience the isolation Anne felt if even for  a weekend. Of course there were exceptions - but we got the message.  It was a life lesson for me in empathy. 

So it was no surprise, that the self-same inspirational teacher who taught us to experience Anne Frank and introduced us to short stories like The Lady or The Tiger --- was my absolute favorite, Mrs. Bolton.  With short cropped brunette hair, she favored simple gold hoops and gold rimmed glasses. Her accessories were simple which set off her jewel toned silk blouses well.  She had flair and presence, a strong jawline with flashing eyes.    Every paper we wrote had thoughtful critique and she was careful in her encouragement - she posted our scores coded with out text book numbers so she wouldn’t  embarrass anyone but at the same time it encouraged healthy competition.  I loved her class - she introduced us to new ways of thinking and new ways of expressing ourselves.   And there was one other girl, a tall Irish American, Anne Seaton who seemed to be as passionate as I was about the class - each week we would check where were in the class rank - we just traded places - but it was fun.  

One week we had a test -  it was a big one -  and we all sat down seriously contemplating our answers to the essay questions.  And a loud groan escaped from someone. Snickering erupted. Who was the clown making fun of the exam? And that’s when it happened.  With a sickening thud i crashed out of my desk hitting my temple on the steel legs of the desk next to me.  I had had another seizure.  The pressure I suppose of the exam - that was my usual trigger - stress or fatigue - perhaps got to me.  When I came to Mrs. Bolton had me in her arms and the class was quiet.  I was brought to the nurse and my mother collected me. Shame and disgust filled my entire being as I walked away from the class.  When my temple hit the steel, I soiled myself and the stench of urine clung to me.  My mother rushed me to Mount Elizabeth Hospital to see my specialist.  We waited for 3 hours.  I had never felt worse.  My skirt dried up eventually but that just made me feel worse. I felt dirty, ashamed and neglected.  I was weak and exhausted, my mother was tired and worried, my father was out of the country on business.  We had never been in this situation before. Typically,  we would just go home and I would sleep it off -  but this time, I had an accident and my mom wanted to make sure I had no further head injury.  But no one knew I would wait for 3 hours.  

In the hours of the wait, drifting in and out of exhaustion - i remember being anxious about going back to school.  What would people say?  This was the 8th grade.  I  had already been bullied when I entered the 5th grade for having a different skin color -  this was something that marked me in a much deeper way.  I wasn’t sure I could bear the ridicule.  And in the next few days that I remained at home, resting - the fright and apprehension just escalated.  Each night I would pray for comfort. 

Finally, it came time to go back to school.  And by some miracle, no one made fun of me.  I was welcomed back like a sorely missed friend.  Mrs. Bolton took me aside and explained that her son also fainted - and he was a smart boy --- and I was bright girl and  that she had talked to the class and no one was going to make fun of me.  Then, a classmate, who I had barely talked to, Valerie Wheeler, came up to me and said, “I saw what happened”.  I froze.  I didn’t know what would come next.  Then she said, “My mom is like you.  She has fits too. We were on  cruise once when it happened. But she’s ok.”  

And, this suit of armor which I had built around me from the day I stepped away from the class wet skirt clinging around my legs, slowly fell away.  The one thing that I thought would mark me,  was the one thing that opened me up to receive grace and mercy.  Years later, I found Valerie on Facebook and thanked her for that one kind gesture that changed my life.  She remembered it when I mentioned it - but she had no idea what that tiny gesture of acceptance meant to me.  I still need to find Mrs. Bolton.  She not only taught me about empathy in literature - but also demonstrated it when it mattered most.    


Sunday, 25 August 2013

In the beginning


I remember it vividly.  I couldn’t have been more than two and a half,  but it is my clearest and first memory.  My mother had just come home bearing gifts -  a doll made for me by godmother:   It had two heads -  one of each end - if you flipped the skirt of the dress of the doll one way, a blue gingham dress appeared and a broad smiling face appeared, if you flipped the dress the other way, a red polka dotted dress appeared and another face smiled up at me.  I was fascinated -  the doll was as big as me!  I embraced the doll as hard as I could and ran as fast as I my chubby legs would take me.  It was a moment of pure joy.  A gift made of love by someone I love dearly. What could be better?  And so I ran.  And my foot caught on the skirt of my doll and I tripped - rushing headlong onto the steps separating the living room and the private quarters.  I howled in pain.  My front teeth had hit the top step and on impact were pushed up my gums.  It took a while for the pain and the shock to subside.  After that I’m sure life resumed as is always the case.  

Happy, confident and missing teeth :-)
I am told - because this I have no memory of it -  but the recollections of my uncle and my parents that even today embody much pain - that my first seizure occurred when I was 3.  Six months after I tripped, I am told my eyes rolled back, my body went rigid and then my small body shook convulsively.  I cannot begin to imagine what it must have felt like for my mother to see my small body react that way.  And to later on hear the words “seizure” or “epilepsy” at that time. This was 1975.  These were things you simply did not talk about - there were conditions that marked you, made you different, could subject you to discrimination and worse, ridicule.  What parent would want this for their child?  

And while I have never discussed with my parents what went through their minds at that time, I never felt I needed to. They encouraged in me a love for the sea and water - enrolling in me swimming classes as early as 3.  Whatever my brother experienced so did I, we raced go-karts around the village.  We felt invincible the summers we grew up - complete with our super hero costumes. I made for a cherubic Bat Girl.  It was only later on when I spoke to my neurologists when I was perhaps Grade 7 that I realized swimming was one of the things that was most dangerous to me - as I could have a seizure in the water.  But by that time it was too late. I had already spent summers at the beach, in swim camp, competed even.  So for as long as someone was at the pool with me and I never swam alone that was the restriction.  If I give pause then, that wasn’t so bad - by that time, with my brother, I had learned to swim the length of the pool holding one breath.  

I am certain that I broke my parents hearts more than once.  I am sure I created a fissure every time I had a seizure - whether they were by my side at church, or whether I was alone, falling head first in the living room on a Saturday morning missing the corner of the dining table - or in school, during an exam, knocking my head on the desk beside me - or in the office, during a meeting - or in Toys R Us, on Christmas Eve doing last minute shopping - or halfway across the world in Pittsburgh alone in my apartment at 3am.  

If I was in the same country - I would be taken home, allowed to sleep it off - as I would feel completely drained of energy in the aftermath of a seizure. In the mist of exhaustion and medication, I would see my mother crying and I would push her away and my father would hover and pull everyone away until I was more ready.  Readiness for me included mental readiness for a bunch of things that would come soon after -  I would have to go back to the hospital for tests, I would be told I wouldn’t be allowed to go out for a few weeks/months, depression would set in for a while because I would be reminded as much as I tried that I wasn’t “normal”. Seizures are a bit of in-your face reminder.  So when I said I was ready,  family would come in the room, with my favorite food, I would rest for days as ordered by the doctor and we would resume daily activities.  



Melissa at the Mt. Pulag summit. She won over her
 challenges of climbing (1st time),
 sleeping with wet stuff (1st time),
and walking for many hours at a time
just to see the sunrise at Mt. Pulag
(Caption by photographer)
To my parents’ credit, I didn’t get any slack growing up - we had equal chores,  whether it was getting up early to walk the dogs, or washing the dishes, doing the gardening -  my brother and I shared the tasks equally.  If I mouthed off or teased my brother, I suffered the same penalties as my brother if he did the same to me.  As a result, I never thought I could “use” epilepsy as an excuse.  I was held to the same high standards of performance and behavior.  I didn’t feel different, I felt special - but special in the way that each child feels special and secure in their parents’ love.

My parents face tough choices every day.  Certainly my determination to do things that are more daring make things tougher for them.  They have endured my love for travel knowing that when I travel sometimes I will be out of their protection - and that more than likely I will  try things that they will likely be uncomfortable with. Like jumping off a cliff in Mexico, or white water rafting,  or climbing a mountain.  But they are equally determined to celebrate these joys with me.  They love and support that I work at overcoming the limitations epilepsy tries to impose.  

Heading out for our Saturday morning run
Of course I’ve learned to do so with care. When I wanted to take better care of my body - I had  been told I could not participate in vigorous exercise all my life as one of my triggers is physical fatigue and hyperventilation - I enlisted the help of coaches.  I took it slow -  but now I can run 10-15K.  If I decide I’m climbing a mountain, I do so with trusted friends who know what to do and are ready to what it takes to me to a safe place should anything happen.  And my tests have never been better.  So when people comment that I look fitter now - my dad tells them with pride - “She’s a runner you know.”