Wednesday, September 3, 2014

For someone I'll never see again...

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I used to have this Uncle. Won't spell out the exact relationship just so no one can tell the person I am talking about. This Uncle passed away shortly after Him and I were married. It was not anything that we expected. One assumed that his tall figure would always wait at the airport when one landed, paper rolled under the arm, waving lanky arms excitedly. I understand from my mother's stories about my baby days, that he was everything to me for a while. I must not have felt any of that in my teen years, because I had been nothing short of a b**** to the poor man. That is a strong word for me. I live in a household with many males and they all swear routinely. But this is the only word that I cannot stand. There is some manner of violence to it that I can't put my finger on. So to say that is what I was to this much hassled uncle is to say that I really was a miserable human being for a while.

I hated him with a passion for some years. Some years, because from the time that I lived with my grandma, Uncle and Aunt, to the time the said Uncle died, it was just seven short years. I often wonder how much my utter disregard for his feelings must have contributed to his overall disillusion. He was all of 59 when he passed away. I believe he died of a broken heart. My Aunt is a good woman, but I think my Uncle was beaten down by life.

My entire issue started when my parents discussed their particular disagreements with him in front of me. I could never think well of him after. Dad's angst was understandable. To the rational, planned, "never-drop-the ball" type A's, he would have seemed a bumbling buffoon. I spent the years from 13-16 believing it. And the years from 16-18 hating him for it. Hate as in visceral hate. And yet, he never showed me what he thought or felt. Through all of my attempts to ignore him in the home that we all lived in, and through all my attempts to exclude him from the fabric of my life, that in truth, him and my aunt were holding together, he still asked after my well being. Bought goodies that he knew I liked, and never once let on to my parents that he was dissatisfied with my conduct, and that sometimes, as a teenager would, I skimped on helping around the house. Tiny though it was.

That is not to say that he didn't have his failings. I only failed to note in that time in my life, that everyone did, everyone who lived on after him developed even bigger failings, and that he had been someone who existed solely to take care of everyone around him. He didn't have any children. But he took care of his mother, me, a couple of wild cousins, a sister and generally made everyone else's problems his. Which might be why he could never get anywhere. Of course, no one in the family will believe it. But it is my take on why he might have failed where others atleast broke the surface.

Then again, failure, time, success, richness, poverty, money etc are such human constructs. We have become the adjectives that we syllabicated many timelines ago. We structured words to convey expectation and appreciation.We have run since to shape ourselves to be worthy of our own hype. And as in the case of this Uncle, who I now believe was not meant for this world, expect everyone else to fit in as we would. Struggle as we would. And be as fearful of negative labels because that's just what we are afraid will happen to us.

Uncle just continued living as joyously as he could in his cramped life. And one could tell that he could not feel his lack. That he expected to be loved and appreciated and did not feel poor. He didn't behave like there was anything missing from his life although a great deal had been lacking since childhood. For all the siblings in fact. But he was the only one living where the others had left. He tried to keep his wife happy as he could. And tried to ignore Dad's repeated attempts to beat some monetary sense into him. And tried to laugh and joke and be an outstanding human connection to everyone who ever crossed his path. And continued to ignore Dad's pleas for some sense as he sent yet another lump sum of money that Uncle asked for.

Money was the construct that broke them in the end. The arguments, the stress and the lost gaiety came from Uncle and Aunty needing more, and Dad having to provide. And still there was so much to Uncle that we couldn't appreciate then.

I was resentful of Dad having to part with his hard earned money then. And I still don't think that he should have had to fund anyone's lifestyle. But the grey area gets me these days. I what? So bloody what if he needed a handout every year? And so what if he took trips and ate out and laughed and hung out with friends? Was he supposed to stop breathing from the guilt? He didn't live in a forgiving country. And he told me later that he never in all his life asked for a raise because he believed that raises had to be given. Not asked for. And even I. at 18 knew that not much came from this world without that initial push at the very least from us.

He didn't belong here. And he was idealistic and impulsive. Loving and carefree. I grew to understand once I was on my own, and struggled for a bit to be understood myself. It all grew into appreciation pretty quickly. And it seemed to me for a short while after I was married, that he would always be there to reach out to. Which is why I never called him after saying goodbye to him at the airport in Aug 2000, as a new bride going away with her husband. He was gone in November. I do not have guilt that I did not call. I feel immense guilt that I burdened him with childishness when he had been so close to death. And when he could have used some affection and understanding. I now believe those two qualities can change so much in people's lives.

I regret the arrogance that allowed me to think so little of him; regret that it prevented any closeness...

To a man who had once been everything to me. That manner of blindness is the worst in the world. I hope he knows that I regret my lost teen years that could have been better. For all of us. I hope he knows that I am sorry for being a cause of strife in his tragically short life. And I hope he knows that I love him. I never did tell him that.

And of course, I hope he knows that the whole bunch of us who judged and withheld appreciation are actually grateful. Even if his life never quite fit our shortsighted framework, he was quite the champion. Our lives had been better with him in it. And better because of him.

He also loved flowers. And laughter. What a loss! Our loss...

His birthday falls in the second week of September. This is my remembrance.

*image - "Gardenia" by panuruangjan through

Saturday, August 23, 2014

About the ALS Ice Bucket Challenge and why I think it is a great idea

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There has been a lot of controversy regarding the Ice Bucket mania that has gripped the nation. One can understand why the thought of celebs pouring ice cold slush over themselves comes across as ridiculous and attention grabbing. And as outlandish as one may be tempted to think it is, I believe that this is an AWESOME way to raise money for ALS and it's victims.

I run another blog that has so far been devoted solely to ALS research and it's impact upon the victims and their families, and ways to help these people go through an extremely stressful condition.

We have ways to buy time, scope for remission, and cures for other conditions. There is none of this yet for
ALS. Right from the time that Lou Gehrig and this condition became synonymous, there has been research in many parts of the world. Awareness is not as it should be either. We have pink ribbons for breast cancer awareness and research, a Run for MS, and others where victims can more often than not participate and hope for recovery. In the blog that I update, I advertise the ALS Walk where ALS sufferers are part of the participating population. Every year, one can see them get weaker, use more assistive devices and walk less, until they are spectators and one day, they are not part of anything on this earth anymore.

And no one has a concrete idea as to why this happens. There are theories, and there is much research. But no proper idea, and no potential for a cure yet.

It meant as much to me as it does to many of you; a vaguely disturbing, sad condition that one pushes to the corner, much like we attempt to ignore news about poverty, massacres etc. Simply because there isn't a whole lot one can do to change things, and because we would be bogged down with helpless sadness if we thought of these things all the time.

pic credit - prakorn,

Then I met Linda. Linda who was so full of vitality, and bursting with ideas and projects. She had raised two daughters and had traveled the world. She and her husband, Him and I and others were were all on the same project in Panama, and we met during a Christmas party. After a couple of meetings, she told a group of ladies about her twin sister, Laurie, who had passed away from ALS. The profound sadness in her face is something that will take me a long time to forget. Laurie had been as Linda was now. Vital, alive and adventurous. She had been a wife, mother, and do-er of all things. A mild weakness that she noticed in her legs had been no cause for concern. She attributed it to her rather active lifestyle and continued to train and strengthen her body. When the weakness progressed, and subsequent tests revealed the devastating ALS diagnosis, she and her husband attempted researching every possible outlet. Every potential cure, and research study. She even participated in one. Unfortunately her condition progressed rapidly and she passed away in 2006. Her story can be found HERE.

Linda has been tireless in her efforts to talk about ALS, raise funds for those suffering from ALS, called PALS. She has shared ways to help families affected by this on the reachforacure blog. Ways to help, in addition to spreading the word, and controversial or not, joining in the ice-bucket challenge, can be found HERE. While individuals suffering from this have their lives taken over in ways that they could not have imagined, their families suffer enormously. Given that the condition causes people to lose any control and strength in their bodies, the constant caretaking wears caregivers down. The financial impact is also enormous. Whether it is the primary bread winner, or a grown child, there is a constant need of supplies and doctor's visits. I can't imagine the impact of watching a loved one degenerate before your eyes, knowing that there is nothing one can do, but make them comfortable for the days that they have left. And this is right from the beginning, from the time of diagnosis. Not a single hope except that the disease might keep the loved one communicating for as long as possible.

There is much more to this than everyone trying a new trick on themselves. I don't believe that I've seen ALS get as much exposure before and it's great, and it's important, and it is necessary for us to know why this happens so that we can put a stop to it, or change things to make them better. Right now, no one knows for sure. They're just about finding the information in genes. But what causes the progression, why some get it (Linda's ever torturous question to herself and us - why did Laurie get it and not her?), and could it be environmental?

If you're not up to ice bucket challenges, and would like to help, perhaps the many ways outlined by Linda might offer you some insight, HERE. If you're able to provide help monetarily, Linda's Walk Page can be found HERE and the ALS association's donation page can be found HERE.

There is so much more to all this than a macho dunk in ice. I truly hope researchers find answers and stop ALS's ravaging effects on individuals and their families.

Tuesday, August 19, 2014

little delight!

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Little boy shrieked, "follow the bee!"
chubby feet sprung into faster leaps by
green grass bouncing free

"A rainbow splashed on the grass!!"
tiny shriek and dropping jaw
showed what formal verse could never surpass!

Of course it was delight
*Image 1
to see every flower you could think of
doused in every spectrum of bright

Tumble into loveliness to rise again
snapdragons' yellow anointing a forehead just as,
morning glories peek from behind ears hidden behind a mane

That black mane dressed artfully with poppy
wait, before you inhale that clover!
Pick it out while dusting pollen from cheeks glossy

He thought of me too,
this I knew when he plucked from his chest,
a forget-me-not that matched my dress, rich of the bluest hue.

The hours spent with one wish
that we could be each color in that meadow
reality such anguish!

I think now that we were lucky to have just been,
my little boy and me, alive in that abundance
a place, maybe heaven or earth, or somewhere inbetween...

*Image 1 - "Wild Flowers" by dan through

Wednesday, August 13, 2014

I'll never say it to you again

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I'll never say it to you again,
never mean that,
a hundred shards of glass would cause me less pain
than it does when you smile
as you would at a gamboling puppy
and break my most recent heart and add it to the pile.

I'll never say it to you again,
never mean that,
a hundred shards of glass would cause me less pain
than it does when you join the jeering other
more in love with the laughter and good times
so blind to tears that fall silent as a feather.

I'll never say it to you again,
never mean that,
a hundred shards of glass would cause me less pain
than it does when you dismiss with words amorphous
as we do flyers selling services, refrigerators, because we have too many,
any expression deeper than an inch of the surface.

I'll never say it to you again,
that I need you much the same
as you might need me if your love caused you pain,
as you might need me if your tears fell into clapping hands and scornful eyes,
and when you say that the ocean is a measure of the capacity of your heart,
I say that I'd rather not have it, because I am wise.

*Image - "Rose In A Bubble" by njaj through

Say what you want to say...

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Blanket of sound
a hundred cicadas
enliven the air as if to say
your voice is found!

Word and thought
in eternal gestation
stuck as a babe lying sidewise
breathlessly awaited, cry sought

Still the birds call
p'raps nonsense or code for a new granary found
chirp, caw, cluck or such
winter to fall

Not scorn, nor jest, not ire nor glory ought distort
a cicada's soprano, or a crow's grating caw ,
Words of pearls, beads, gems polished or not,
strung in confident gold, soothing as a draught.

*Image - "Flying Seagull" by Naypong through