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

Thursday, August 7, 2014

Start Over

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The concrete reflected light from the midmorning sun. Bright, harsh and just the same as yesterday at 9AM. And the day before, and the one before that. Months before summer's heat set in, it stayed cold and grey until 10AM, after which the reluctant light illuminated the uneven pavements that unprotestingly bore hundreds of walkers. Some new and most who likely stepped on the same uneven seams for years.

Aura wondered if it bothered everyone as much as it did her. "Showing up to work is half the battle won!" Her father's voice echoed through her head. He was right. Because she did not want to show up these days. Not to work, and most certainly not on the pavement that led right to the doorstep of AB Banking. There was something about walking everyday, in her black 2 inch heels no matter what her outfit. It was usually black, with white or an occasional dove grey shirt, tailored just so, buttoned up to her clavicles, showing nothing but a serious, thought burdened countenance.

And here she was, named for all things magical, subtle, suggestive. It had been this way since that redefining afternoon five years ago, she thought, allowing the words to coalesce finally. Suddenly turning around, away from AB's doors that the door man held open for her, his warm smile turning quizzical as he watched her face, she ran away. She ran against the crush now, and her legs took her to the lake that calmly sweltered in the August heat. How did so much time go by? Was it already so long since....?

Shaking legs carried her to a bench off to the side. A different one from her memories. The ducks clucked closer to her shoes, as she sat still as a stone. She had to sit still...her brain was assaulted by images. Groping fingers, unexpectedly foul breath, a vicious hold on a throat that had known nothig but the whisper of jewelry, and the caress of breezes.

Five years since the man's attack on her person made her loathe herself. Made her stick to walking the same pavement to work everyday. Years of unspoken, unshared trauma that screamed through the constancy of her life and choices. Years of being safe from terror, and never rousing a man's interest for fear of history repeating itself.

He had been handsome and worked not far from where she had interned. It was supposed to be an innocent lunch time meeting by the lake, and then a stroll in the bright summer light. She remembered her floral shift dress of the day, bright crimson and pink flowers on a cream chiffon that was innocence and burgeoning sensuality. It hadn't taken long for him to lead her far from the lake and into a grove of trees. It had been beautiful. She also remembered thinking it was a romantic setting. That was until her grabbed her throat from behind, and growled into her ear, words that she couldn't comprehend for fright. She only remembered the fetid smell of his breath as he proceeded. She couldn't wear her gardenia scent anymore without imagining the rotten flesh smell of him.

*image 1
She had stumbled back to work, where her astounded coworkers scrambled to get help. The police found a few leads but nothing ever materialized. His picture was on a news channel a couple of years later under a list of deceased in a drug heist. She had been at her parents' house for Christmas and had promptly passed out. Nothing made her tell them, and just as they sensed that something terrible had changed their vibrant girl's personality forever, they also sensed that pushing for answers would break her.

She couldn't stand the loathing she felt. Of herself, her surroundings, her family, and yet, these were all she knew. And knew enough that running to another place would not piece together her broken sense of self.

The ripples on the lake gently shook free a tumult of emotions that she had suppressed under her stuffy jackets for years. She went home, bundled up her entire wardrobe and dumped it outside. She should give it to Goodwill, she thought. But her feet carried her of their own accord. Somewhere along the way, she had removed her jacket and dumped that in a   restaurant's trash bin.

He had changed how she thought of herself. She taught herself to be inconspicuous, and safe. She had snuffed her love of colors and scent...anything that would draw attention. More than anything else, she had refused to look up as she walked, look to a future, or possibilities.

It would change.

First, a trip to a counselor, then home, then to a clothing store, to buy another shift dress in cream chiffon, with no flowers. She would start afresh, on a clean slate. She would learn to live again; and learn who she could be from what she had had to become.

*image 1 - "Orange Flowers" by phanlop88 through