DISTURBING RARITY REALITY!


http://wereblog.com/12-year-old-boy-with-a-rare-condition-with-his-head-hang-180-degrees

This is one of the reasons why my blog, Special Persons are People, Too! got conceived.

It’s not much really as I have failed to maintain it thinking it was a futile attempt at publicizing what my thoughts were regarding things, other special persons, and my pathetic quest to know more about my congenital defect. I did not have the absolute clarity as to the purpose of my putting up a blog. I felt it was useless; and my thoughts were: ‘Who am kidding? What in the world was I thinking putting up a blog nobody wants to read? To think I’m not an accomplished writer! Who cares about things like this?’

After several years of hiatus, I finally found better motivations not only to keep my blog afloat, but above all, to make something out of it as an instrument in service of humanity. On top of writing and sharing my thoughts and that of others’, I shall try to promote better understanding and awareness about us as God’s special creatures, to disseminate information as to the legitimacy and morality of our rlghts and privileges as also members of the society who ought not to be discriminated, oppressed, persecuted, looked down upon, bullied, and deprived of our basic needs having been borne to a society that should respect and celebrate those who are ‘slightly different’. It’s gonna be one tough journey; but we all have to start somewhere.

I pray for wisdom and resources for whatever purpose The Universe has drafted and designed for me.

Advertisements

partial novel body


As a child, I have always been charming and precocious. I was really cute; being too small for my age and pretty at that, getting people’s attention and sympathy was easy. Everybody loved me; and most of the time, I was given special privileges and I was well-thought of wherever I went. Special considerations and extra showers of affection boosted my morale and uplifted my self-esteem. I always won at pleasing those around me; and in return, I had more than my fair share of the love and care that each growing child needs. To empower, to inspire, to soothe the spirit, and to strengthen self-confidence and self-worth.
People used to say to me, “you’re so cute!” and “you’re so bright!” as I was growing up. I’ve gotten so used to hearing these compliments that sometimes I’d even murmur the words before they can even say it. I had fun each time and I’d secretly laugh to myself. The compliments never failed to flatter me, though.
I had a fascination for information and my curiosity was boundless. I have always been tirelessly finding things out, studying, learning, expanding my horizons and spreading my wings. I loved to explore and plow the field, so to speak. I was a voracious reader, never letting good reading materials pass me up. My passion for learning was burning incessantly. Best of all, my retentive memory has been responsible for my feats. Knowing things and discerning them for ultimate comprehension came easy to me. I was ‘brilliant’, they say.
I had the knack for literature and language was my forte.
“We want you to write the editorial for the year’s first quarter issue of “The Gazette”. I would; and before I know it, I was already editor for that school organ.
What I lacked in height I more than made up for my keen sense of understanding and very daring personality. I was good with people and my public relations skills were excellent.
“Go, go, go Cecilia!”, my friends and classmates would cheer and chant at debates at school or at quiz bees.
As a lawyer, I never lacked the right tools for defense and offense. Whichever party I represented, it’s never a problem going inside, under, above, or beside the workings of the law for either loop holes or cork screws to arm me at the battlefield. I never lost a case ever.
My height didn’t bother me at all. I didn’t have any feelings of insecurity nor did I have ‘inferiority complex’. I was too smart to be infected by that. In spite of the fact that I stood at only a little over four feet, ironically, I was endowed with a very powerful voice. One that never failed to catch attention or demand respect. Almost masculine, clear, strong and concise, my voice had been an asset that impressed the masses, convinced the judges, amused big time politicians, pacified insurgents, assured clients, and consoled hundreds of oppressed individuals who believed in somebody who will stand by them through thick and thin. Likewise, anyone who hears me without seeing the real me tends to have the surprise of a lifetime and it’s always amusing. Thus, I had a powerful personality and I cultivated it well using it to my greatest advantage.
As a student, I was very competitive. I was always among the top students.
“You made it again this year, Cecilia, good job!”, says a teacher.
I tried to be the best in everything I did. It would torment me whenever some classmate or colleague had the edge over me. I felt I didn’t give my best. I would strive even harder to accomplish more and obtain higher grades. It meant so much when I earn respect and appreciation from my fellow classmates, friends, teachers and professors. My sense of accomplishment never waned; as a professional, I still maintained the level of excellence in everything I endeavored to do. I was consistent in terms of proficiency and mastery.
In high school, I could have bested anyone in the classroom if I chose to. In terms of academic and extra-curricular activities, I was never behind because it broke me whenever I failed at something. Losing or being only second best wasn’t acceptable. No one set this criteria for me to follow; that has been my own rule. I set a high standard for myself and did everything to live by it. Being physically challenged myself, I made it a point to be an inspiration for people with physical problems. I wanted to be a living example; no matter what the circumstances are, it’s not impossible to excel scholastically and to succeed in anything you put your mind to. I had all the right gifts; and I vowed to use them to serve humanity.
I was always recognized and given merit for my achievements and successes. But I never let these get into my head. No matter how high I soared, my heart was always below, where it surely belonged- next to my family-for the masses, for civic duty, for justice and truth.
Being an achiever, however, has its setbacks. There are those who are green with envy that they’d try tactics to destroy you, discourage you or drive you away.
“Hey Cecilia, did you know that Anna Marie Lucuesta says you’re a cheat?”, a classmate would ask.
And I would just laugh my solid, throaty laugh saying, “Let her be. She’s just jealous for being such a loser. She failed at American Literature, you know”. And then we laughed together.
But I didn’t mind; it gave me all the more motivation to be even better. As long as I played the game right, I have nothing to fear. I always believed to fight for what is right and to stand for the causes that matter. My gift of gab always made me get through tight spots, holes, nooks and crannies; while my bravado has been misconstrued for conceit most of the time, though. But I didn’t dwell on that; what mattered most was that I stood by my principles and philosophies, and my intentions were never malicious.
My leftist mentality and passion for things social, civic and political were starting to manifest themselves while at secondary school. As early as the fourth year in high school, I became an activist; a naysayer, protestor and oppositionist when I thought something wasn’t right. I also boldly challenged the authorities, questioned rules, guidelines, and ordinances. When something smelled fishy, I was at the forefront demanding transparency. I always read the daily newspapers and I was very updated with current events and I was seething with fury to read about opression, discrimination, deprivations and other forms of injustices, and even impunity; I was ‘inflamed’ to do something to contribute.
“How come I don’t see Miss Cecilia Marquez today”, asked my senior year teacher”. And true enough, my classmates would answer back, “where else, at the plaza or at the city hall, of course”. Pickets and rallies were common then. I used to join them and voiced my apprehensions, opinions, suggestions and protestations. I actively participated that I missed classes at school. I was very passionate to the extent that I traded my honor slots then.
I was good at deductive and inductive reasoning and making logical explanations for, and discussing about events, issues and relevant subjects, modesty aside, was a piece of cake for me somehow. could make generalizations, summaries, conclusions and synopses ahead of everyone else when required of us. And it’s through this that I’m able to infer when there’s some discrepancy or if ever something was out of line.
I was never lazy to learn of new things and it was plain innate in me to be always on my feet doing something exciting and worthy. Instead of lazing around and engaging in things irrelevant and trivial, intellectually challenging undertakings perked me up and motivated me in ways that I become productive. I was always enthusiastic for seminars and fora. I can present ideas and take the floor real well. I got involved and participated and contributed in programs and alliances that were for good causes. I was the proponent for a myriad of groups, associations and organizations. I was also a literary editor, and I was always sought after for what I have to say about a certain issue or concern. My views were valued as relevant and insightful or inspiring or motivating.
It was in college when I started smoking. It’s a bad habit I never really outgrew. In fact, my daughter Nikki reprimands me all the time. My children are concerned because the doctor has advised for me to quit it or else my health will be jeopardized.
“You ought to stop, mom. Or else it’s gonna be the death of you”. “Okay, okay, sure”, I would retort back.
I just couldn’t do it somehow. I can be stubborn and the children complained about it. I go to great lengths to cover my tracks at home regarding my smoking. To keep the peace and stop them from worrying about me and my well-being, I never let them see me smoke the past few years anymore as long as I can help it.
My playing mah jong, on the other hand, doesn’t really get on their nerves. They even encourage me to play sometimes.
“Hey mum! Aunt Arlene wants you to go there to play mah jong! She’s on the phone! Mum! Go and have fun, okay!” and I would shout back from downstairs: “I will later. Gotta finish up some printing. Thanks, Clio…” I feel good when the kids sound that way. It made me feel really special.
When they push me to go out have some fun or go shopping or go to the beauty saloon, the fhaggling takes time but they always win. They just love it when I give myself time. This may be due to the fact that I don’t really have any forms of diversion to get my mind off the volumes of case files at the office and at home, and the never-ending invites for speakerships, guestings, and other social appearances. I’m always requested when it is required for an authority figure’s presence at educational institutions or organizational gatherings. My kids know damn well how much I work hard for them. Plus, they think I truly deserve to enjoy some other things beside the courtroom battles that I love. I am very grateful for having such wonderful children and grandchildren. I am truly blessed in a way.

THE PHYSICALLY CHALLENGED: a race forgotten, misconstrued


We call them freaks. We pay money to see them make fools of themselves.

We make fun of them as if their feelings don’t count. As kids, we harass them the first

chance we get. Because we have no tolerance for the askew, the crooked, the odd and

the physically gross or absurd. We think of them as non-human. Maltreatment and

injustice are only a common form of torment. .. (in this era wherein ‘beautiful’ is

defined by the perfection as to physicality, elegance and sophistication,and largely

depends on the carats of gems on the bejeweled class of the society where the rich and

the famous choke on over dosage of fame and overwhelming wealth).

In an age and time where everything gets fixed or “converted” into

something new and beautiful (at the right price) in the ultimate quest for the

preservation of youth and for aesthetics’ sake, some of us born rather ‘differently’ seems

to have been thrown in the backstage. Amidst the clamor and din of this fast and furious

rat race, these least of our brethren have been, since time immemorial, considered

second class citizens.

 

We tend to forget that amongst us, between the living and the dead, there

thrives a breathing, feeling faction of our race that silently, in the shadows, desperately

struggles to outlive a cruel, indifferent civilization where only the best, the brightest

and the most able have the privilege to rise up and hear the bells.

What does it mean to be congenitally defective today? True, more and more

consideration for the physically disabled and/or “special people” have never been better

with the rise in growing social awareness for the physically challenged members of our

society. Special seats, lanes, marked lavatories, especially designed walkways and

tracks, custom- made prosthetics, gadgets and what-have-yous became commonplace in

our feeble attempt to show them we care and that they count.

 

Truth is, these attempts are just to quench the guilt deep inside us. We

should be convicted and hanged for enjoying so much while they suffer in the shadows,

out of the limelight, unwillingly bathing in shame at the mercy of the bonds of

insecurity, hopelessness, envy and hate-forever stuck, forever needy and forever

irrelevant and useless. We should be fined and punished for the awesome feeling after a

nature trail hike where we got the chance to bask in the glory of seeing the world from a

different light and being able to fully experience all of its wonders. We should be

tortured and made to suffer for the awesome sights and sounds that travel makes

possible.

 

In the end, nothing can ever make up or suffice even, for the feelings of

deprivations and the pain and suffering of the physically unfortunate. These are beyond

reimbursement. Nothing can ever make up for the torment, grief and the sorrow that

inability and disability gift wraps them with at birth.

 

But everything gets to be alright

when we are loved. The world seems better, brighter. To quote anew, LOVE is the KEY.

KYLA


I saw her on teevee today.
I almost thought, “how cruel God must be”.
I almost cried; seeing her was just like your heart was crushed.
Such fragile ‘thing’… It must be very hard for her mum…

Kyla was auditioning for a teevee show.

The show is the local equivalent of America’s Got Talent television program. She was auditioning! Before her turn to show-off, nobody would ever believe she was there for the screening. SCREENING!

Did you say, screening? Screening as in like auditioning? As in: a trial performance to determine suitability for a contest? A try-out? An elimination exercise?

Yes. And for a prestigious national television show, at that.

Because Kyla looked like she’s just a baby, you can never tell otherwise. Her mother carries her around. She doesn’t have the capacity or functionality to walk. Her legs couldn’t support her. All her extremities seemed very fragile, although her hands looked ‘normal’. I couldn’t see her legs and feet, though. She was wearing stockings. But I could clearly discern her legs’ length and how useless they are.

Kyla is 11 years old.

When it was her turn to ‘try-out’, she was on a chair. A microphone was already set up for her. She sang a song that made her get in. She did it! She’s gonna be joining in the contest proper! Bravo! Kudos!

Whatever the turn-out of the contest proper doesn’t matter. For, at this stage, it cannot be determined yet. But one thing is clear: her strength of spirit is amazing. The mere fact that she went through the eye of the needle is an extremely awesome feat.

Good luck, Kyla!

(PERILS OF) MOTHERHOOD TOWARDS THE PHYSICALLY CHALLENGED


As if motherhood is not bad enough. For someone with 4 boys. And unfortunately, one of them has a congenital physical deformity (clubfoot). And no one to rely on but herself. To help out with the bunch of them. AS IF(!) motherhood is not bad enough.

That must feel like the whole world, with its nearly seven billion human inhabitants-and their savvy gadgets, and other worldly possessions, not to mention the gazillion tons of waste they produce every single second-is upon her callous shoulders. What a pity for someone who’s always being there for her kids-never complaining, never grouchy, never blabber-mouthing.

Having to ‘UFC’ 4 boys every single day (for how long, only time can ‘tweet’), is, without doubt, a very strenuous task. It’s amazing how she refuses to take a single day off. For some peace, for some respite from the chaos, for some time for herself perhaps? Nada. That really bothers me!

Worse, she gets to be blamed as the catalyst for one of her kids’ misfortune. As if, again, she intended, meant, or desired in her heart for him to be borne that way. Whew! And worst of all, he tells it to her face. I guess that hurts the most. Where did she go wrong, she can only ask herself in utter helplessness.

For a 12-year old with a congenital physical condition, which happens to be the cause of all his misery, anxiety, insecurity, disenchantment and depression, it is but typical to blame someone- if not something- for his demise. The closest, most logical ‘culprit’ would be his mother, since child-bearing is supposed to be HER job.

For that kind of mentality to go on unchecked could be a disaster. I really think that something has to be done right away. For the child to foster that kind of attitude towards his mother is definitely unhealthy. Furthermore, professional help or a good mom-and-son talk ought to ensue. The son has to be made aware of the consequences of his behavior, and that it doesn’t resolve the problem but consequently aggravates it. After all, it’s something that can never be undone; there’s no point playing the blame game, to think it’s not actually his mom’s fault.

For parents of the handicapped, it is but crucial that emphasis be put on the careful assessment of the emotional health and over-all stability of the child. They are very sensitive. They tend to get hurt easily (which most often makes them aggressive and/or defensive). Much consideration should be taken as to the emotional re-enforcement special persons need. Extra care, love, understanding and attention are their life lines.

Because where we dwell is a cruel world, and since the physically defective is obviously no-match for the harsh, brutal reality called life, the only pedestal for the weak is strength of spirit. Hone and sharpen the heart and mind and the spirit gets strong. Strength of spirit is strength of mind and heart. Being armed with this weapon, the child has a chance to win.

Love is the key.