Birth of a poem

This was written in '97. I was doing a creative writing course (postal) from UK and they used to send a monthly newsletter about opening for freelance contributors in magazines and journals in the UK. In one issue I found a small column about a poetry competition with the title 'LOST' to be judged by an eminent poet (I don't remember who). This info was lingering in my head but I wasn't expecting anything to come out of it. Then bingo! I was going through the India Today in candlelight (those were the days of 30 mins load shedding & funnily those 30 mins turned out to be the most intense or focused in a 24 hrs day). There was a write-up about Soumitra Chatterjee, I don't remember the headline but the introduction had something like “he may have retired but his popularity refuses to go into oblivion”. The last word somehow rang a bell in my head and the last line was formed and very soon the whole poem was ready. So, I pulled a writing pad closer and jotted it down (yes! I used to write everything on paper with a pen in those days). Next day, I requested Dad to get it typed in his office PC and bring a couple of prints in the format specified in the newsletter. I did get the print out and a floppy disk in the evening with the comment "the lady who typed this told that you had spelt ‘existence’ wrongly and she has corrected it." No idea if he had read the whole thing. But, he did get me the Demand Draft for the submission and then I typed the covering letter attaching the poem and the DD with an unstamped self-addressed envelope requesting them that I’d like to have the opinion of the judge about my poem. I’d get it after a month or so on a piece of paper not bigger than a visiting card “We did not mean to use the title to be used in that context. And, only a person with severe physical disability can come up with the last line."

For me writing this at that time was an experiment with words rather than an emotional outpouring. But, I feel today it somehow resonates my mental state and I doubt that my mind will conjure up such a thing no matter however hard I try.

Lost

Dreams are lost with the sweet slumber.

Wishes are buried deep inside the heart.

The vulnerability to love,

The courage to hate,

Is lost.

Hopes for the future,

Memories of the past,

Are lost as I pass through the present.

Futility of existence pierces the soul.

Now I wish my life to be lost in the oblivion of eternity.

Stray Dogs

In hindsight every life threatening situation has something funny about it or it just leaves you with a smirk on your face because you survived it and it gives massage to your ego.

Well, I’d such an experience a few weeks back. People familiar with me maybe dying of boredom reading about or listening to my adventures on the battery operated wheelchair. So, this is basically for the uninitiated or the people who may have missed this story altogether.

It was a Sunday afternoon and on the whim I felt like catching up the latest release in the theatre nearby. Oddly, I was feeling super confident that today being a holiday I’ll reach the theatre without any hassle as the traffic on the road would be minimal and I’d cross the roads without any assistance.

My intuition was proven right as there wasn’t a soul on the road. So, I continued my jaunt till reaching the main junction - no traffic. Still, I looked left, then right, then left again (as they used to teach in school from a chapter about Road Safety) before crossing the road.

Having crossed the road, I was jubilant in my head and even imagined punching the air. The going was smooth till now. I was aware of the big auto rickshaw parked ahead and cautious that I should not bang it. Suddenly I heard a humming sound, it took me a few seconds to realise that it was actually a growl. My eyes started searching for the source of that, and there he was, under the auto, looking at me. My wheelchair automatically became dead slow, undecided whether to go ahead or to stop. In fact, there was a bunch of them taking their afternoon nap. Meanwhile, the growling had become barking and it was waking up others. The barking one had come out by now and taken his position on my left and others were following him and taking their positions as if they were going to have a pre-match huddle like cricketers around me.

I nearly started crying looking at the jaw of the leader of the pack barking ferociously, I’d see the sharpness of his teeth and wondered where he’d reach if he decided to pounce on me, shoulder, neck, face and even my head. Suddenly, the dialogue from Life of Pi “Animals don't think like we do! People who forget that get themselves killed. When you look into an animal's eyes, you are seeing your own emotions reflected back at you, and nothing else.” flashed through and I realised that crying won’t help, turned my chair to the right and ran for my life.

Yet I’d feel that a few of them were chasing me, barking at the top of their lungs and an old drunkard (who couldn’t even keep his Lungi in place) standing on the sidelines and telling me pedikalle mone, unnum chayilla (don’t be scared son, they won’t harm you).

Thankfully, a couple of bikes appeared (as if they were assigned to save my life) from nowhere honking and making noise, which made my chasers disperse in various directions and forget everything about me.

I stopped when I was safe distance away from the dogs. My thighs were shivering due to spasm and anxiety, which is risky as my balance on the chair is maintained by the stability of my legs on the footrest. If I lose that I may slip out of the seat very soon and then manoeuvring the chair would be impossible. So, my first thought was to take U turn and return home. But, facing those dogs again within minutes didn’t feel good and I’d already covered three-fourth of way to the theatre and it’d be such a waste of effort to return home without watching the movie.

***

I’d narrated this incident orally to my friend Velu, who was very encouraging in saying that my narration was so good that it kept haunting him for a couple of nights. So, I’ve burnt the proverbial midnight oil for a few nights to write it down for the wider world.

No Looking Back by Shivani Gupta

My review of this book has appeared in the Jul - Sep 2014 issue of Success & Ability.

I have always felt lucky to be born disabled. No, it is not because of the privilege that I have been looked after by people from the time I was a baby till well into my forties as if I haven’t grown up, as some friends like to joke. But, it is because I have seen a few people (who are my friends now) becoming wheelchair-users in their prime, they all have been brave and somehow surmounted the ordeal. The latest addition in this list of friends is Shivani Gupta. I had heard a lot about her as an award-winning crusader for the disabled.

But, when I heard about a book on her life on the social media, I felt a little sceptical as we Indians are not good at saying it as it is in writing at least in writing. Yet, I got the book without being sure that I will ever finish reading it. And, to my surprise I was visualising the author’s life without knowing that I had started turning pages (though I was reading an ebook).

What happens when the dreams of a twenty-two year old girl’s dreams are crashed in a car accident. Obviously, the fact would take time to sink in, and, it would be a painfully slow. The realisation that your life has gone topsy turvy and things will not be back to normal ever again is hard hitting. You may find Shivani’s life story familiar to some extent, as it covers medical negligence and the lack of knowledge in the medical staff to deal with her case.

For me, the book really begins when Shivani starts describing things after the rehabilitation (meaning that she had accepted being a wheelchair user). She dwells on matters that we in India tend to brush under the carpet or gloss over. The family is believed to be sacrosanct here, especially if you are disabled they become your support system. Shivani tells us about the issues between her father and her helper about how to take best care of her that made her wish to get out of the protective umbrella of the family. She achieved this when she gets a job as a peer counsellor at the Indian Spinal Injuries Centre (where she herself was treated) and she started living on the premises to avoid travelling from home to the centre on a daily basis. The space provided to her was far from comfortable, but, with dogged determination she survived there until she got apartment of her own in the vicinity.

There are more nuggets from her day to day life that endorse her determined outlook and her wish to make everything she went through worth its while.

The other thing that strikes you about Shivani is the audacity with which she talks about her relationship with Vikas, an occupational therapist whom she had met at her place of work. He was a much younger man full of life and passion for his work. He saw a hero in her and their relationship developed into something that would be a taboo even in this day and age. They got romantically involved and their courtship continued for many years before his parents agreed to their marriage. In between they did many interesting things like learning about inclusion and accessibility in foreign lands. Most importantly, they launched an accessibility consultancy and audit firm (not a NGO) AccessAbility, a pioneering thing in India.

But, as luck would have it Vikas lost his life just a few months after the marriage in a car accident. And, this book is Shivani’s tribute to him. In a way, writing this book helped in coming to terms with her loss. A word of caution to the people who read books to experience the flourish of language, this book is not for you as it is plain, simple and to the point.

As the final words, we can say that the book No Looking Back is more about the Art of Bouncing Back.

The Curse of being perceived as Gifted

There is a general myth that a disabled person may have a gift that would make him/her an extraordinary being. Yes there will always be a few gifted types among the disabled as you would find in any other sphere of life; racial, economic, social etc. Sometimes, you may find a genius who is a mixture of different spheres, so, it'll be difficult to pinpoint where the spark comes from. But, when disability is one of the sphere, it is normally considered a blessing for the gifted person and even a normal person carrying a disability is easily termed Gifted.

I write ordinarily, it is an acquired skill, that too very late in life as I thought it would be the easiest thing to do with my limited mobility (and very soon realised how wrong I was). I have no romantic notions about it as such. I will trade this skill if I am given physical independence in exchange.

These thoughts came to me after watching Bereft of Colours, a short film about a blind artist who loses her vision to paint after her eyesight is restored and in the end she dramatically destroys her eyes to regain her vision.

I felt very disturbed as I mentioned earlier that I can trade anything for physical independence even though I am not really unhappy in current situation.

For his part the director can put up a defence mentioning the constraints in exploring the subject in depth for a Diploma Film. But still...

Bereft Of Colours from Akram Hassan on Vimeo.

I came to know about this film from here. And, yes I have seen Ship of Theseus and feel like giving the benefit of doubt to the SOT team in the 'inspiration/copy' case.

Fruit Stalls in the Gujarati Street

Last evening my sis Smita took me for a round on my wheelchair to the vegetable/fruit market reviving the memories of our younger days when it was a  routine. Initially, I was very shy and conscious of people watching or staring at me, and, her only argument would be "if I'm not bothered why should you be?" Slowly I started enjoying such outings.

As I look back I feel that I've changed a lot since those days, now I'm least bothered about the stares and would even smile at someone who persistently looks at me. Yesterday was fun as hardly anybody realised that I'd a camera with me and that I was taking pictures or video (the video has a steadicam feel to it).

I've got a video recording of around four minutes, will try to upload it after some editing adding background score.

Useless Feet :P

Indelible - The Film

I'd thought that my association (or obsession if you like to call it that) with Down's Syndrome had come to end with the publication of this short story. But, the link got revived a couple of nights back when I chanced upon a short film titled Indelible directed by Pavitra Chalam through twitter.

The film shows glimpses of life of seven persons of different age groups having this syndrome:

PS: Another coincidence connected with this film being that I knew Akshay Shankar, the production manager of this film as a toddler (pre kindergarten age) as he happens to be the son of one of my teachers in the special school. In fact, we both learnt being on all fours together, while I was made to do it on the physio mat with my crooked hands tied with gaiters, it came naturally to him.

On Life Without Limits by Nick Vujicic

I have done this write-up for the next issue of Success & Ability.

Your smile becomes the most important weapon in your armoury to survive in this world when you possess a deformed body (let the political correctness be set aside for a while). Anyone born with severe physical disabilities maybe aware of this fact subconsciously as I was, but it struck me or came to the fore into my consciousness when I saw Nick Vujicic's picture on the cover of his book 'Life Without Limits: Inspiration for a ridiculously good life'. I have been staring at his face for nearly a month now, sometimes straight and sometimes guiltily from the corner of my eyes as he was lying on my table and I was doing something else instead of reading his book. Coming back to the smile; it dawned on me that the smile on his face conveyed that he was normal, accessible and happy despite having no limbs.

Nick was born with Phocomelia (born without limbs), and who went on to become world renowned public speaker spreading the message of hope and faith among the down trodden and less fortunate in the slums Mumbai and Cairo, and to the far flung regions in South Africa and Indonesia. 

I have not read many biographical books about disabled people as I feel I would have to relive my own life through that person's story as there are always some universal similarities in such stories. So, you have to brace yourself first and even take a break when things become overbearing.

The other thing, Nick being a motivational speaker, takes the tone of one while writing this book, believing that every reader who has taken up his may be feeling low or depressed and seeking to change his/her life for the better as he writes in the beginning; To wish for change will change nothing. To make the decision to take action right now will change everything! Initially, we (those of us who have casually picked up the book to read an interesting life story) may find it difficult to plunge into this book so to speak. It becomes easier once we get used to the tone.

Nick begins his story right at his birth, about how his mother refused to see or touch him out of shock. Nick's mother who was a nurse and a midwife at that was worried through the pregnancy period of her first born but the doctors had allayed her fears and even the Ultra Sound Scan reports hadn't shown any complications. His parents had started talking about this when Nick was a teenager and had started prodding them about his birth.

Nick's childhood was normal as it could be with two younger siblings and number of cousins. He was an adventure loving kid and had even learnt to be in an upright position by thrusting his forehead to the wall. He goes on to say that however confident and determined he was externally, doubts and dark thoughts always haunted him in private. He used to pray to God every night for a miracle and hoped he would have at least one limb when he woke up. But obviously that never happened and the depression led him to attempt suicide by drowning in the bathtub. This phase was but temporary as people around him (mainly his parents) made him realise that his birth was according to the plan of God and that it had its purpose that would be revealed to him one day.

Nick, an Australian of Siberian descent had migrated to California, USA with his family for the better medical facilities there, realised that he was good at public speaking as a teenager when he started seeing what positive impact he has on the members in the audience.

'Life Without Limits' is structured very thoughtfully with the foundation of optimism, hopes and dreams leading to attitude of gratitude and in the end realising one's life's purpose.

A book's purpose is supposed to open a new world to the reader and Nick Vijucic opens up a 'ridiculously good world' with his book, whatever your faith or beliefs are and fills you with positivity.

The Diary – A Short Story

As I'd said here, I'm posting the short story The Diary below:

The Diary

Today is our thirteenth wedding anniversary. The thought left me numb the whole day, making me physically and mentally inert. I kept wondering whether she remembered or had forgotten, leading a blissful life with her new husband. Though it didn’t hurt as it did a couple of years ago; I had never imagined that we’d end up like this.

The unscheduled call from Priya was reassuring, as usual she just asked: “How are you Appa?” Her speech was so clear that I couldn’t imagine her face while listening to her. Maybe, I felt like that because her mother had remembered that it was an important day in our lives, which made me very happy. Even otherwise, I always look for improvements in Priya, however small they are.

The memory of Nirmala Auntie’s sullen face is still vivid in my mind. She had insisted that we both go to her clinic to discuss the ultra-sound scan report. She began with the history, saying that she was only a glorified midwife at the time of my birth some thirty years ago; just prescribing iron and calcium supplements for pregnant women. “The times have changed, now we depend on these things to decide the fate of a life even before it begins to exist as such,” she was saying looking into the report. I felt that she wished to change its content by the intensity of her gaze; “I think we should terminate this pregnancy -,” she was saying this while looking at the blank wall behind us. I couldn't gauge the seriousness of the statement at that moment but the shrillness in the response to her utterance from my wife surprised me. A simple “What is wrong...?” had a shattering effect. I always thought that she was the most pragmatic woman one could find on the face of earth. Nothing could move or shake her. For her everything had to have a logic and rationale. You'd learn to see the things happening around you with a clear perspective that is not effected by your emotions was her constant refrain.

Afterwards, whatever went on in Nirmala Auntie's cabin had a dreamlike quality for me. I couldn't register their conversation though I'd see their lips moving and their faces taking odd shapes as they spoke. Though, some words like chromosomal defect, Down's syndrome, mentally retarded and abnormal stuck in my head. “I wish to have this   baby.” “You see, it is not the nine months of pregnancy but the time after the baby is born; the struggle will begin then and it won't end soon. It will be lifelong. Anyway, both of you discuss this – we've got some time. It is up to both of you to decide.” Those were Nirmala Auntie's final words before we left her that day. We had not known that there was something called pre-natal detection of deformity in the foetus. Our impression was just that this fancy gadget was to know the gender of the baby before it is born (which is legally banned as leads to female foeticide). But, the modern day gynaecologists insisted on using this fancy gadget at least three or four times during the pregnancy saying that it was just to insure that everything was normal with the baby. And, above all it is an expensive affair.

I waited for a couple of days for her to initiate discussion on the topic. But, she’d become unduly silent after coming back from the clinic and even had extended her leave from work, which happened very rarely. Sometimes I felt like giving her a jolt just to bring her back into this world. At last I broached the topic asking her when we will go in for abortion. I just got a look in response that ordered me to stop. But I persisted; making a case out of whatever scratchy memory I had of Nirmala Auntie’s talk. I was prepared for a full blown argument and had the conviction that by the end she would see the practical side of it and turn around. But, I think I'd misjudged the maternal instinct in her as the only response I got was a grunt or a 'hmm'. “Everything will work out, we've to make it work”, was the lengthiest reply from her. My patience had started to wear off. I was feeling agitated in spite of myself and blurted out; “these kids look cute on TV and their stories make Reader's Digest worth reading”. But, what proved to be the final nail in the coffin of our relationship was my question; “How can we love an abnormal baby?” I never thought it was a harsh or inhuman question as it was made out to be. I had just voiced a practical concern. Still, it drew us apart.

It was utter disbelief and shock for me; I'd expected same kind of approach from her. Anyone knowing her well would have thought that she will go for abortion. She always claimed that she cannot be an irrational sentimental fool that guys like me expected her to be while I was chasing her while doing my MBA. She was my senior by a few semesters. As a single child bought up with lot of aspirations – parental as well as her own. She hardly had any friends out of the campus, knowing her life outside. Initially, I was interested only in casual flirting. But, her repulsive attitude intensified my desire to know her. Again, it took me lot of effort to take the relationship to the next level; there were always conditions; I shouldn't be childish, there was nothing called love whatever I was feeling was just a brief fascination and it shouldn't hamper our studies as our parents had invested their hard earned money for our future. And, unlike me she could stay aloof or distant she desired as if she had nothing for me. It used to make me insecure that she may not have anything for me. But, it didn't matter to her a bit; 'take it or leave it' was her only consolation. So, the onus was on me.

A few months before her final exams I gathered the courage to propose to her and made her read the last paragraph of Vikram Chandra's Commonwealth Award winning book Love and Longing in Bombay:    I might ask her to marry me. If we search together, I think, we may find in Andheri, in Colaba, in Bhuleshwar, perhaps not heaven, or its opposite, but only life itself. She just ruffled my hair in what I believed was a show of affection and told that we'd wait and see what life has got for us outside the campus.

    And, to put it simply as they say in the most abused cliché that 'the rest is history'.

People advise me to move on, to search for a new life-partner as if my heart is a moss infected water tank that can be cleaned with bleaching powder and filled with fresh water. Maybe, I'll be able to do it in future (as I've started writing this nearly after nine years. Had stopped it on the day we went to meet Nirmala Auntie to discuss the first scan report). But, as of now I don't feel fully detached from Priya and her. Though, I can smile without a reason when I wake up in the morning as I used to do before. The guilt has virtually subsided and I've got semblance of a balance and as of now that is the best I can do as far as moving on is concerned.

*********

This story was attempted as an exercise for Kochi Writers' Club, an informal gathering of friends with aspirations to write in English, in this exercise we had to use a passage of literature and I opted for the last lines of Love and Longing in Bombay by Vikram Chandra.

PS. A few posts I'd written about pre-natal detection of disability and other such things here, here and here.

Magic Realism

Read about it here.

Employibility

Read it here.