MY STORY

(As was told in a former blog - in prequels and sequels)

“A mysterious illness left me paralyzed from the neck down. I lost my voice and communication was reduced to questions answerable by ‘yes and ‘no’ only. I replied by winking, a quick eye bat meant ‘no’ and two meant ‘yes’. I was only eight years old.”

Prequel

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Dad built us a shanty under one of our mango trees. I was seven and my brother was six. If you don’t find us down there, we’re probably in another tree, climbing the brick fence or trying to get on top of Chikie’s (our hog) roof (yeah, we once lived with a swine). Hey, she was a good pig you know. I, personally, prefer a corner with a book until the light goes out but my brother would lose his mind if he remained still for a few seconds (apparently even when asleep) so we were always moving. If not running, walking, if not walking, jumping from the sofa to the floor, from the floor to the sofa, from the sofa to the floor, as if there was nothing more to life than jumping back and forth. We were so shallow.

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School was a refreshing break from the wired life with the brother at home. In school, I can sit still without disturbance, read, write and be the lethargic nerd I was already. In school I was the teacher’s pet, I was the favorite friend, I was popular. My teacher was an old gray-haired woman (Spanish looking) whom we all feared. She was good looking but had the face of a tiger. All she would do was write stuff on the blackboard and sit through the subjects. In no time I won her favor and got to use her long wooden stick (it was like the king’s scepter –lol- it symbolized authority and status – lol) and pat anyone I’d catch not paying attention to the lessons at hand. BUT with that privilege came the responsibility to lead the whole class to reading, using the teacher’s stick to point to words on the blackboard that a girl, less than four feet high, can’t reach yet, do flashcards, help them with their homeworks, check their assignments and help them in math??? (alright, I was smarter when I was eight). My teacher manipulated me into doing much of her work in class and her bait was her stick. To an eight year old, that didn’t matter. I have the ‘scepter’ (shallow and deluded - shakes head).

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Weekends were a treat. Sunday meant Sunday school. Yes, I was an avid fan of it even then. MY brother and I would be up early, we’ll be dressed in clothes cut from the same fabric (that sucks) and we would walk a few kilometers to church an hour ahead of our parents. We walked because we didn’t know how to commute yet. I also had a wiz kid reputation there but that was all I felt I was worth. Of all places, it was in Sunday school where I first learned I’m not a pretty girl. I was short, skinny and brown and my hair is black. Back then you had to be a little chubby and foreign-looking to be considered pretty. And if you were not pretty, you can’t be an angel in the Christmas presentation. This I was told. Well, I’d rather jump from the sofa to the floor.

Prequel II (Bear with me)
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Summer was approaching and school was ending. We were practicing our cub scout’s march for the coming “recognition Day”. The best of the bests will be honored with ribbons and little “Blue” had her name in one of them. But the thought of that is nothing compared to the thought of marching the cubs’ scout’s march, in cub-scout socks, green dress, yellow scarf around the neck, a hat and a cub-scout badge. I couldn’t wait to do the formations. I never made the march.

I can’t remember how many days in between it was from that unforgettable marching in school to that Friday morning our dad took us jogging (he would whenever he could). We’d go around the neighborhood, making our way around the cow dung that littered the street; our father said they were cakes (lol) and the goat droppings were raisins (shakes head at adults). We almost believed. That fateful day, I backed off from the traditional morning run, my lower back and butt area hurt abnormally. I just sat by the way side and waited for them to return. Who knew that was going to be my last shot at running?

The pain became unbearable that night. They stacked pillows under my legs so they’re propped up on top of them while I lay in the room. They were hurting so bad. I barely slept and just cried quietly. Even then I preferred to fight my battles alone. I collapsed the following morning trying to get to the rest room. My right leg was numb and it hurt to even just stand on it. It felt like my sole was being punctured with needles. I limped around the house on one leg the whole day. My mom was worried but angry. She said I was being too dramatic and should ignore the pain and force myself to walk on both legs or else it would worsen (sometimes she plays doctor). And it did.

On Sunday, three days after, both my legs were paralyzed and my dad took me to my uncle’s house where we met with their family doctor. He took out this hammer from somewhere (I thought he was going to beat me with it –lol) and gently, with minimal effort tapped my knees, I guess my legs were supposed to respond and kick him back (lol – ok, joking) but there was nothing. The doctor swiftly made a diagnosis (which later was contested by other doctors we saw), Polio.

On Monday, March - 1978, I was taken to a government hospital, where all the poor polio victims were getting free treatments (it was all we could afford and it sucked there big time!) and this was to be my home (or hell) for the next weeks to come.

Prequel III (Getting there)

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The first day at the hospital was horrible. We had to stay in a crowded pediatric ward where there were more than ten patients at the time. Some were new too, some, almost ready to be shipped out. It was an unsettling place for an 8 year old who only knew home, school and church, and the people there. The strangers frightened me so, that mom had to be near, within sight at least or I’d start screaming in a fit of tears. I was now an invalid, couldn’t follow her around if she moved away, won’t be able to get up and run if there was going to be any danger. And for some unclear reason I felt I was every second, and her threats that she’d leave me if I don’t stop being a paranoid twit certainly didn’t help.

The first night at the hospital was worst than the first day at the hospital. My temperature soared high and I slipped in and out of delirium. I remember crying to my mom because my vision was doubling due to the fever and it scared me so. My mom cried along, panicky. I realize now how horrible all of it must have been for her too. She was only 27 and this was our first serious confinement. I had always been sickly but not like this, she hasn‘t seen me like this yet. She hasn’t experienced this before either.

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What we thought were just a day or two of hospital stay turned into weeks of hospital stay, to a month. A nightmare we will both share for life. My condition grew worse and I developed a lung complication (Sorry if I can’t give a clearer diagnosis or definition) that needed me to be moved to the ICU room next to our ward.

There, I went downhill. I lost my voice and communication was reduced to questions answerable by ‘yes and ‘no’ only. I replied by winking, a quick eye bat meant ‘no’ and two meant ‘yes’.

The Sequel (Picking up where I left off at the beginning…)

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The complication was Bronchopneumonia (at last my dad remembers!) and the doctors wanted to do a Tracheostomy (a tracheotomy or tracheostomy is a surgical procedure performed on the neck to open a direct airway through an incision in the trachea (the windpipe) but my parents refused. Immediate families already made funeral suggestions and my uncle who was then a minister in the church we used to go to, would bring his Bible when he visits, reads passages to me and even had me memorize John 3:16. Even though I couldn’t talk anymore, he said I could, in my mind, still remember God’s word.

The weeklong vigil on whether I will die or not began at the ICU room, where the dreaded respiratory machines and life-size oxygen tanks line up in a corner, waiting for the next expiration. By this time, I was slipping in and out of consciousness and breathing was laborious.

My mom took one night off from her watch after she had a quarrel with one of the nurses. Mom said that she saw her turn off my oxygen tank and no sooner when she stepped back, my mom turned it back (whatever it was that was turned –lol). She lashed out at the nurse and accused them of trying to speed up my death. Too bad I missed all that action.

So my dad kept watch that night and we had our moment. As I laid there, unmoving but with eyes open and much aware of things, he took out a piece of paper where something was written and then he began to sing acapella…

When you’re weary, feeling small
When tears are in your eyes
I will dry them all, I’m on your side
Oh when times get rough
And friends just can’t be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

When you're down and out, when you're on the street,
When evening falls so hard, I will comfort you.
I'll take your part, oh, when darkness comes,
And pain is all around,
Like a bridge over troubled water,
I will lay me down,
Like a bridge over troubled water,
I will lay me down.

Sail on silver girl, sail on by,
Your time has come to shine,
All your dreams are on their way.
See how they shine, oh, if you need a friend,
I'm sailing right behind,
Like a bridge over troubled water,
I will ease your mind,
Like a bridge over troubled water,
I will ease your mind.

…near the end of the song, his voice cracked and his tears fell and met mine. I felt so guilty, I didn’t want mom and dad to be so sad, so hurt, so burdened (yes, children do blame themselves a lot for everything that happens in the family) . I wanted to comfort him, to say it will be all right but I couldn’t say a word and I was only eight.

Sequel II (Almost done)

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My condition continued to plunge. At times I’d have seizures or convulsions (concluded that base on how she describes them). At last, after dancing around the bed for days now, death was finally closing in and thought he had it sacked. I turned blue and seemed to have stopped breathing, my mom turned away, to the door and prayed. She didn’t want to watch me die and she’s accepted it. Everyone else has. This was the time to let go.

She waited. My dad wasn’t there; there was just her and God, me and the gurgling oxygen tank that was quieting down. But something happened, something so unexpected! She heard the sweetest voice she hadn’t heard in a while; mine – I called out for water!!! I remember waking up so thirsty, like I’d just jumped up and down and ran a marathon. Mom’s heart leaped as hope filled the room. A miracle was sent from heaven! I wasn’t only alive; I was also speaking!

We stayed at the ICU room for a few more days. My condition had improved but not enough to earn a ticket out. Seven children died in that room before I was there. But I wasn’t going to be number eight. One mid day, a day or two before I was transferred back to the ward, an older man, a big one, was wheeled in the room. He just had a Tracheostomy. He didn’t make it to the respiratory machine, he died right there, the eighth victim.

My mom gained a little reputation in the ward after that. What was her secret? What did she do? What was the ritual? What kept me alive? A 2 year-old boy in the same ward who was checking out in a few days suddenly fell terribly ill. That night he was at the ICU, his grandmother asked my mom to watch over him and do whatever it was she did to me to keep him breathing. He died the next morning. It was measles, the ninth victim.

Sequel III
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Three more weeks passed, I missed the cub-scout march, the “Recognition Day”, the school competition where 15 of us were chosen to represent the school. I still got my ribbon despite my weeks of absences but what is that worth to me now? After everything that happened, what’s a piece of ribbon now? Or even the teacher’s stick? All I wanted was to go home and leave that awful place. Mom said I was going to get better, that I’d be walking home.

The day finally came BUT I wasn’t hopping and jumping in the cab. I was worse than when I first came in. This was not how I pictured it! They said I was going to get better! I was angry, I was frustrated, for the first time, I was hopeless. “Such liars!” I thought, “Why don’t they just tell me the truth that I’m never going to walk? Why did they give me such false hope?” Mom had to fasten her arm around me to keep me from falling forward or sideways in the backseat. My left hand was deformed, my shoulders drooped, the left side of my stomach bloated like a balloon when I coughed or exerted any effort, I couldn’t even fold my fingers! I was going home a vegetable!

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The house looked the same but felt different. It wasn’t the same. I wasn’t the same, never again. Now I had to re-learn to do everything all over like a newborn. I couldn’t even digest food. Food had to be juiced or minced. I had to have suppository to be able to move waste (I hated that!).

The road to recovery was going to be long, painful and arduous. But there was some consolation. People started flocking the house, former Sunday school teachers, relatives, even a celebrity. His name was Heber Bartolome of the infamous “Banyuhay” band (an institution now in the local music industry). He just had surgery and part of his intestine was removed (this was a BIG medical thing here then), and he came just to share his testimony to me. Imagine that! But being eight only, the honor of being visited by a famous figure hadn’t struck me yet. So we were busy entertaining guests for a while and didn’t have time to grieve for my misfortune.

Sequel IV (Second to the last, I promise.)

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All the excitement eventually wound down and reality began to sink in. Reality that my life is changed forever and nothing I want will ever come easy for me again. At eight, I’d have to work harder than my contemporaries, emotionally, mentally and physically.

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Physical Torture -The therapies were extremely painful. My body still felt numb and touching leaves a faint burning sensation on the skin. Moving legs and hands felt bones were being twisted. Therapy sessions meant an hour of screaming, pleading and calling out to the neighbors (lol). I was a scandalous little brat. I’d scream and tell the neighbors that I was being tortured and that my family was killing me (silly girl – lol). I laugh at myself now but it wasn’t funny back then. A child in pain is a child in pain (they give something for that now I think).

Because I was a comic fan, mom would buy heaps of them and pile them up next to my face during therapy hour and try to distract me with them but I was like – “NO! You can’t fool me! It hurts too much, why can’t you see it and make it STOP!”. I couldn’t say them but I screamed them through fits of tears and loud bawling. My dad would leave the house because he couldn’t stand it, if he stayed longer he would end the session and send the therapist away but that won’t be good for me. This was just physical pain, the outer mantle of my agony; we haven’t gotten to the core yet.

Mental Torment - My parents had to be tough; they can’t afford to raise me weak. They had to be rough; someone told them if they gave me too much love, I’d be too dependent for life. No mercy. They needed to do this (unfortunately this might work for some but not for all – it only half worked for me) to prepare me for the times ahead when life will be harder and people won’t be kinder.

Mom made a chocolate drink and it wasn’t like we could afford to buy them always. So this was a treat. But if I wanted a drink, I’d have to lift the glass. And I tried but my hands couldn’t even turn a book page. I could feel my fingers gripping the glass but only in my mind, because they weren’t really. The glass started leaning on one side and the chocolate is starting to spill. My mom was getting upset (or so she pretended); I was wasting the chocolate she said. My tears started falling – this was cruel. I could almost taste that Ovaltine (the chocolate brand) but if the glass continues to tilt. All of it will be on the floor and she won’t make another. “Oh God, do something! Freeze the chocolate!” I thought. Before the glass fell she caught it and let me have my Ovaltine. This was how they motivated me. Torture first but in the end, give in (lol).

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Emotional Anguish – I had to stop school for a year but everyday I sat by the window and watch children in school uniforms walking to and from school. I missed school, my girlfriends, the tree house, the pig. I missed walking, running, playing with my little brother. I missed my life. The world was so different now. I cried all the time. It was all too much for a smart 8 year old to take. Too much that I’d break down whenever they talked about it. I didn’t want to remember anymore and I didn’t want people talking about what happened to me so if they ever had to (if a guest was asking for details) they’d wait until I’m away. If someone asked we just say I got ill and I stopped walking, period.

We never really talk about it until now….

Sequel IV (finally!)

It took a long time before I regained a little independence. At last, I could turn a book page, roll over when lying down, sit, eat, write, dress up, put socks on, play my miniature clay pots and stop crying.

One Sunday morning, I remember being really upset because my dad won’t take me to Sunday school. I thought if the doctors couldn’t fix me, I can’t fix me, maybe God could do something. Where we failed, God couldn’t possibly. And in that thought, in clinging to the ONE who holds ALL the answers and the cure, I found my hope once again.

After a year, I went back to school and once more, dominated the honor list. I finished elementary in a regular school and beat my classmates who were walking (muahaha!). What my dad said stuck with me. He said the only way the other kids would respect me and not bully me around is if I can be better than them and show I’m worth more than a rusting chair with wheels and I did (grins).

I home-studied in highschool and took up Interior Design from a private correspondence school called ICS (International Correspondence School). Back then, the local government didn’t have a program for home schooling yet. ICS was an American standard based, post grad correspondence school, based in Scranton Pennsylvania USA. All my books came from there. This is why I read, write and speak fluent English. I had a good training. I wanted to take an Education course but ICS didn’t offer any at that time so I settled for re-decorating houses (lol).

Today, 29 years later, I still can’t walk but can do most things by myself. Many of my questions still haven’t been answered, most of what I wanted and hoped for, I didn’t get and those that I did, came in unconventional packages. I wanted work for money and self-fulfillment but instead became a volunteer for all sorts of free services like tutoring, raising a baby brother etc., and got a monthly pension for being a handicap person that I don’t work a cent for (not bad huh?). I didn’t get to be a teacher in a public school like I dreamed (since I love helping out kids – probably because of my own childhood) but I still ended up a teacher, a special one at that, the Sunday school kind

I wrote this, first, for myself (to deal with it finally) and second, for others (so they’d be nicer to me – haha!). May those who will read it find inspiration and encouragement. The hard times do pass and each one makes a better person out of us if we would choose to not lose hope. I don’t think I’d be the thoughtful, sweet, understanding, deep, blessed person that and the list goes on (did I forget conceited? - lol), I am today if I hadn’t been put to the test early on.

I’m not eight anymore but it’s still painful at times to remember and think of the physical restrictions I have but if there’s one thing that kept me strong and continuous to sustain me – that is GOD and HIS LOVE through CHRIST. Knowing that I am loved and will be loved for who I am and who I’m not, for what I can still do and can’t, unconditionally, even if I don’t deserve it. And with that assurance, I press on.

“For all things work together for good, to those who love God, to those who are called according to the purpose………Romans 8:28”

The end