In Gratitude

Insomnia. For no explicable reason. Random musings, flitting in and out through buried memories, revisiting old emotions, listening to the echoes of powerful words engraved into my fibres. And there is only one way I know of venting, of spilling out the torrents of thoughts and mangled feelings. So I write.

I write to thank...
For those honest emotions shed.
For showering confidence, and then sadly pulling chunks of it away.
For being blind to superficiality.
For acknowledging the person within.
For even daring to admire.
For being foolhardy to nurture a dream.
For staying true and sincere through vacuums of time and space.
For relaying comfort and laughter through waves from the skies. Especially the laughter.
For the restlessness to fix things.
For the impulse to reach out and help.
For staying steadfast on the road less traveled.
For neglecting the hurt.
For lingering to care.
For entrenching my growth.
For enriching my story.

And for many more rich experiences, none of which can be given shape through words.

Survivor

In the heat of the afternoon sun, I squint around to spot you. In the waves of the crowd, I’m frantic to catch a glimpse of your shiny red silk, your little braids flapping as you run. And I see you sprawled on the grass , holding another girl’s hand and lovingly sharing your precious cheese-curls like she was your long lost good friend. Within a span of ten minutes after you disappeared into the milling crowd, how did you forge a friendship so adorable, so simple? Games are played spontaneously, there is laughter and fun, care and concern, and genuine affection as you two call each others name and hold on strong as you flit around the trees, playing hide and seek. How do you do it little one? When did you learn the art of forming friendships? How did you learn such spontaneity of expression, free-flowing emotions that neither constrict nor hold you back? When it’s time to say goodbye, you flash a bright smile, wave your hands and prattle goodbyes, knowing well you may never see this girl again. How do you live in the moment, take in all the wonderful emotions, experience them all to the fullest, and let all of them go like a flutter of pigeons released into the skies? The streams flow in and out of you, pristine and unbridled.

The very same evening, you spot another little girl hiding behind her mom. As I march forward like a wise-old sister trying to connect the two of you, you sprint right ahead of me and grab the little girl’s hand and say, “Do you want to play with my bubbles?” But she wriggles from your grasp, frowns at you, pouts and whines, “No! I don’t want to play!” I alarmingly look at you to erase any lines of hurt, but you persist like you never heard her. You hand over your bubble-blower, rush in and fetch your shiny toys, lay them all on her lap, thrust a few into her hands, show her the swing and the slide, while yanking her towards you and repeating, “Come lets' play!” She cringes and shakes her head, dusting herself off your toys, she shoos you away and bleats, “No!! I don’t want to play with you!” It’s too much for me to witness and I retreat inside.


I remember a time long ago, when I heard those very words and recoiled behind my mom, tears welling in my naive eyes, hurt unhealed to this day. Years of slapping my extended hands have driven me deeper and deeper into my own shell, layers of armor raised to protect myself from anything and everything outside. And today, I am a dull, socially-challenged, verbally-challenged, awkward dunderhead. A snail who pops her head inside on sensing a little poke. As frustrated hands rattle my shell to get me out, I hang on stubbornly to the corners of my existence, hurt doubling. When I finally venture out, I am all alone. I realize that I’m but a speck in the vast Universe of those who are bright and important stars in my Universe. I struggle to let go, to placate myself of all the unrequited love and affection.


I peek outside the window after a few minutes, dreading to see you pursuing a play mate who rejected you, or worse, seeing you run around all by yourself. But there I see both of you, hand in hand, squealing through the garden, tossing the toys in the air, rolling on the grass and laughing as if you were two kindred souls reconnected. The little girl, who moments before wore a frown, now bursts with cheer as she scampers around you, eager to play and listen to your suggestions to chase birds and butterflies. How did you transform her, little one? What magic do you wield to charm and befriend?


Both of us heard the very same words, at the very same age, but you barged ahead to assert yourself and accomplish what you wanted. While I couldn’t, and still cannot. How silly do I look in front of you, mopping about rejection. What am I to do, little one, if both of us are wired differently, if our sensitivity thresholds have been programmed differently? How do I imbibe your frivolous attitude toward such silly rejections? You, my dear, are a survivor. Nobody taught you these subtleties of forming friendships; your instincts are those of the fittest survivors. I watch and try to learn.


The need for recognition and acceptance rankles my peace endlessly, as I neither plod forward nor retreat from rejection. I stand rooted with my pleas, awkwardly wondering if my actions haven’t spoken louder than demonstrative overtures, or spirited words. The harder I try, the faster you slip away. I see you walking away and I wonder yet again, where I went wrong. I teach myself yet again, to let go, to accept and to change for the better. And I’m blessed for the handful of those who choose to be around me, no matter how many times I slip into my hard shell.

Reflections: I Raise My Eyes To Say Yes

Ruth Sienkiewicz-Mercer was diagnosed with Cerebral Palsy when she was a toddler. Since that tender age, all she could muster with her body consisted of three things - she could raise her eyes to say "yes", frown and crumple her lips to say "no", and do both the actions in quick succession to indicate "maybe". As Ruth's family grew and finances became tight, her parents were confronted with the tough choice of sending her away to a residential school. However, when her parents entered her into a State Infirmary for the physically and mentally challenged, little did they know how much their ignorance and stoicism resulted in the sacrifice of Ruth's emotional growth and physical development. Ruth was unfairly categorized as being mentally retarded because of her extremely limited expression of intelligence and comprehension. It is ridiculous and highly atrocious that she was made to go through IQ tests, when she was given no tool or support to communicate her answers. She was shuttled between wards housing mentally unstable patients, where she was made to lie on her back all day long, was stuffed with unpalatable food through a watering can, and was left to stare at nothingness all day long, every day, for years together. In short, she was treated like a vegetable which was kept alive and breathing. If there is any other form of cruel punishment to surpass solitary confinement, this would be it. A young girl with an intelligent and curious mind, shackled in a useless body, torn away from friends and family, made to stare at the same things and hear the same disturbing noises, would have lost her sanity. But not Ruth. She braved the ordeal for thirteen years, with her sanity intact, her thoughts lucid, her ambitions high. With the help of many empathetic friends, she eventually moved out of the Infirmary and started a new life in her own apartment. She also undertook the project of putting her story and her thoughts into words. Through communication devices and sophisticated alphabet boards, her thoughts were painstakingly conveyed, and her story has been meticulously written as a book, by Steven Kaplan.

Ruth's story is not just the run of the mill heart-breaking, inspirational memoir. It is a person's plea for recognition as a human being. The book steers away from self-pity, and it doesn't weigh down with emotional intensity. It is a realistic, honest narration of a severely disabled woman with an incredibly robust mind, and an even greater will power. I can't even begin to imagine how anyone could preserve their sanity when subjected to the circumstances that Ruth went through. Not only did this woman, who was branded as useless and mentally retarded, brave the tragic circumstances with a healthy spirit, she also developed a wonderful personality through the whole experience! She never ever gave up trying to assert herself as a person who deserved basic respect. She was astute and intelligent to adapt what little gestures and vocal abilities she had to communicate and let her thoughts be known. When she was introduced to technology which could expand her vocabulary, she worked herself to the bone to somehow use words other than "yes", "no" and "maybe" to express her self. This whole book yet again painfully explicates how priceless words are to establish ourselves as normal, competent individuals. Communication and expression are fundamental to human beings, for we are social animals.

Ruth was "helped" to survive, if survival means just staying alive. But she rebelled for something even more basic - dignity and acceptance. Her life serves as a lesson for bettering the treatment of the physically challenged.

It is a sad realization that even those who aren't limited by any physical challenges face a jungle everyday, that it seems almost unrealistic to expect constant empathy and perfect consideration towards those who unfortunately can't contribute much to society. Ruth's hurt and frustration can be put off as denial to face reality. But with the advent of technology, physical limitations can be erased, skills can be virtually augmented, and the horizon of opportunities through which people like Ruth can contribute to society can be widened. Yet, it still requires empathy, patience and a consideration of these people as fellow human beings to be able to execute these ideals. Ruth's story will demand all of these.

Reflections: Meaning Of A Disability

Until now, I've never felt any urge to write about books that I read  for my academic interests. With ample discussions, term papers and academic book reviews mandated of such books, there's been scarcely any energy or motivation to write about them here. But yesterday, I finished reading two exceptional books that I'm quite eager to share and write about; a rare emotion that accompanies academic prescription.

The first book is by Dr. Robillard, a sociology professor from University of Hawaii. In the mid 1980s, Dr. Robillard was diagnosed with ALS, a motor neuron disease that leads to slow degeneration of motor neurons, muscle atrophy and paralysis of the whole body. Dr. Stephen Hawking is another well-acclaimed professor and scientist afflicted with ALS. The prognosis is usually death within a few years of the onset of the disease. However, Dr. Robillard lives after more than 20 years of being diagnosed with ALS, and continues to teach at the University of Hawaii. He strives to lead a normal life, and his strong-willed spirit keeps him extremely productive and creative. This book is an autobiographical account of his life with ALS, and what it truly means to be physically disabled.

More than the debilitating effects of paralysis, those with ALS acutely miss their ability to speak and communicate. This would be especially true for someone as accomplished, intelligent and articulate as Dr. Robillard. The focus of this book has been to bring to light the significance of simple talk and face-face communication in our social structure, and its intricacy in defining us as individuals who are socially competent and intelligent. Using his own experiences, Dr. Robillard critically analyzes the shift in social structure when a person is struck with a disability to talk and be heard. The method of analysis he has employed is called ethnomethodology.

Our ability to carry on a conversation is often taken for granted. It is a mundane routine. But it's fascinating to learn about the the extent of skill and subtlety involved in simple social interaction. Conversations are highly bound by temporal parameters. A slight miss in the rhythm, an averted gaze, a shift in body posture, an incorrect intonation, a careless gesture, and meaning is lost. Thoughts remain stagnant, and are never transmitted. The person is never understood for what they are and what they want to share. It goes to show how much our identity is tied with these social building blocks. Shatter the blocks, and our individuality as a person in society drastically gets altered. Our personality is shaped through our expressions. Without the ability to express, especially spontaneous expression of thoughts through words, our personality is trapped within our body. This was a very interesting take-away from the book, although it might sound very intuitive. Dr. Robillard's experiences go beyond just common-sense perception.

In addition, the book emphasizes something very fundamental - that the body by itself is a very crucial component of the social comprehension of how competent a person is. It is sad that most of us fall into the notion that a dysfunctional body and dependence due to it, is a sign of incompetence. An active, alert mind, imprisoned inside that body is often ignored. Respect to an individual diminishes with the regression of the body's functionality. Basic dignity is overlooked, and empathy is misdirected through patronizing talk, actions and behavior. Dr. Robillard's accounts have given me a very realistic understanding of the attitudes, angst and expectations of a person with a physical disability. And for primarily this reason, I would recommend this book to those who want to learn how to understand and treat people with physical challenges.

The book is well-written, precise, analytical and grounded in empiricism. Some of his words carry the inevitable marks of hurt and frustration. Dr. Robillard composed the entire book by lip-signing (a method of communication he devised with the help of his wife and students), every word to his students, who typed the manuscript, while his daughter helped with editing. I want to say that I'm inspired by his perseverance, his ambition, motivation and his strength of will, but he resents such statements. To say so is putting him outside the circle of normalcy. He is a normal man, a thoughtful and analytical professor, who is a prolific writer of  remarkable books and papers, teaches courses, and conducts research, befitting his intelligence and personality. And that inspires me.

Equanimity

Life gurgles out with loud cries, googoos and gaagaas, prattles and giggles, bubbles bursting through gibberish, squeals puffed with innocence, endless chatters, parakeet-like babbles, and formless words wrapped in meaningful noise.

Meaning makes its entry as noise shapes into words, words into sentences, sentences into thoughts, thoughts into emotions. With words to carve understanding, emotions still splurge. Unbridled are the giggles, the open-mouthed laughs, the drool dripping screams and hair-raising excitement. And as sharply distinct is the pain, pierced with loud wails, unabashed tears and curses, laments carrying emotions - rich, sincere and simple.

At the peak of the Bell Curve, happiness and pain are picked out with stark demarcation. There are gleeful smiles, the racing of the heart, the little jumps, the clapping of excited hands, and the dreams of a perfect future, as the world celebrates your happiness. When pain grips you, when life refuses to budge to your pleas on the many unpleasant turns, the world looks on you as if you were a centipede crawling on its nerves. The emotions are intensely raw; the difference between dark and light.

Lessons are learned... nay they sometimes get stuffed into you. And the descent from the curve's peak is initiated. You roll with the punches, aware that gravity, or a force of nature beyond your control will eventually get you to the bottom of something. Faced with an inevitability, you prepare yourself through the arduous roll to either limp with your bruises, or remain crawled under your broken limbs. No matter what, emotions nullify each other. When you finally crash, your body disappears, and you stare at emptiness. There is no happiness that you escaped with just bruises, nor is there pain that you are shattered beyond repair. The differences melt away, leaving you acutely aware that you're void of emotions.

Finally. Equanimity is attained at the bottom of the cliff. The serene smile of acceptance dawns.

Nonplussed perhaps, to whisper a thank you to the Universe and its causal scheme, which did prevail over a muddled battle of wills. That faith can indeed get you to the bottom of a rocky tumble with only broken bones and scrapes which can heal over time, is a semblance of understanding glinting through the shades of equanimity.