From darkness to light-Life has come a full circle!

By September 18, 2017 No Comments

Payal Kapoor

Darkness to Light.

From darkness to light-life has come a full circle!

This story has been 24 years in its telling. Today, I feel validated enough to actually do the telling.

Dramatic it sounds, I know, but today as I held the first edition of Insight, a magazine in Braille edited and compiled by me, released on the birth anniversary of Helen Keller, a strange feeling of pride and elation took over. Quite like the joy one derives from holding their baby for the first time;  or watching the first flower bloom on a precious plant you had potted and tended to so lovingly.

This is where the telling of the story seems relevant so the whole dramatic nature of the title can be explained!

It isn’t often that life decides to roll over and play dead on you… or should I say turns on you so you wish you could be any place but stuck in the state you were. Yes, things happen, happen to everyone at some point of time in their lives. Bad things, life changing things that make it hard for you to even recognize who you once were.

Such an event occurred in my life almost 24 years back. Something that transformed me to a new person all together. At a point in life when everything was at its prime, when life was better than good, I was knocked down by an irreversible illness. When the mind strays even today, I wonder what could have perpetrated such a tsunami of events that in their power to destroy, wreaked havoc of the kind I’d never imagined possible. From being a healthy, active and happy girl of 21, I was reduced to a veritable vegetable. I deliberately use the word reduce because that is exactly what happened. In a series of catastrophic medical incidents that I term freaky, I lost my ability to see, hear, touch, taste and smell all in one go!

To say it changed the course of my life is like saying… “oops! Sorry, I lost my way home. Took the wrong turn there. Should have turned right instead of left!” there was none of the real me left. I now understand what the snake must feel like when it sheds skin and looks fresh, shiny and new. Only, I didn’t feel quite that way. What happened to me changed my physical and psychological state completely. It was years before I could find shades of the real me in there somewhere.

Through this state of near metamorphosis, many related events were responsible for how good, bad or terrible I felt. Through the hits and misses during treatments(more misses than hits judging by the end result), people came and people went. Friends, family stuck like glue. I had no idea so many people felt the pain of another’s sorrow until I saw unimaginable numbers coming to my hospital bed, holding my hand, sparing a hug or two, laughing and crying with me. I had chefs for friends… they saw I was fed what I wanted to eat. Teachers from the school I had left over seven years back came, the ayammas came with duas, doctors in the midst of friends and friends of friends ends peeped into the confidential files at the hospital to understand what was being done! Did I say I felt overwhelmed? Blessed beyond imagination? Well, I did! Never had I thought these sort of things happen. Yes, people fell sick, terminally too… sadly; but to be in a state that wouldn’t kill you, but render you disabled for the rest of your living, breathing years was a thought I’d never ever dreamed of in my worst moments. But, it was here! Real as a heart attack(pardon that one.. confuses the illnesses a bit!), but it was just that real!

So, now the deed was done. I was deaf-blind(for a brief period in that state), couldn’t smell or taste anything and had a patchy sense of touch. The hospital said, “this is what we could do, she is young and could recover!” Ah! The glimmer of hope; however false shines so bright! I was just like everyone else. Clung to it until I squashed even that out of any recognizable form and slowly watched that bright light snuff itself out. Now, left with a life in front of me; one I had no idea what to do with; the true devastation set in! I was a basket case, a horror to be around and badly behaved too I think. Years later, I am not proud of being who I was then, but when there’s little else you can do with yourself, you allow all the emotions to rule.

Slowly, as the truth and magnitude of starting afresh in a totally new state set in, the resistance and denial took hold. There was no way I wanted to live a life like that. Fortunately for me, I did begin hearing partially after a point in time. I begged, cajoled, bargained with whichever God, human or energy I could think of. Nope! They all believed the new me had to live just like that. It had a new life and destiny of its own and that was that!

After this proclamation life threw at me, began the second act that was my life

! truly, looking back now, it seems like my life is divided in two clear parts. One before I went blind and after…

Beginning the next phase of my life was more of a struggle than I anticipated. A lot of it was self-imposed I now see from my perch of knowledge and experience. How that could have been different at the time is something we’ll never know. When the mention of rehab came up, it was like someone was pushing me towards the gallows and I’d been relegated to a life of permanent imprisonment in my blindness. This was not something I was going to give into easily. Much blood and tears, attempts from well meaning friends and family alike only brought them up against a wall of denial; so high; seemed I’d never get over to the other side!

Oh! The drama continues I realize as I write this. I just have to make this one more dramatic analogy before I embark on the road ahead! I always feel like I must be the mythical phoenix… that, after being reduced to ashes, rose once again to great heights and freedom! Yes! That is how it all went ahead.

The most dreaded word that kept popping up and around me from time to time was: Braille! Some in hushed voices around me; others not so subtly. But then, I had to learn to read and write again. This was a dreadful first step towards accepting my blindness. More than one person had been suggested, which was vehemently tossed aside by me. Finally a brave friend, braver than most decided it was time! Yes, I guess it was time since I complied to meet with the person who finally turned my life around in more than one way. I remember distinctly my first meeting with him. A blind man himself, he was full of confidence and had a clear sense of direction for me.

Now his idea of directing my life was nothing like what I would have wanted for myself. But then, that time for denials was past; I was bored and fed up of being unhappy all the time. Having someone read the news out to me was alright for a certain time, but then it got old real fast. A voracious reader, the inability to read and write was more debilitating than anything else. After some more discussions the moment finally arrived when I touched my first set of Braille dots. Was it earth-shattering? You bet it was! I remember distinctly tears rolling down my face when those first cluster of dots made me realize the way forward was here! But, how on earth was I to make any sense of just a cluster of raised dots? In my inimitable resistant to change way, I grumbled and complained all the way. Did anyone listen or pay heed? Nope! They all looked the other way and I had no other choice but to continue grumbling and reading.

This was a time when computers were still not what they are today. not everyone had one and neither was the screen reader as developed as it is now. I remember one computer in the organization I went to which was used primarily for office work. There was some specialized software which was going to help translate text to Braille which was later to be printed on the machine there. Now, did I care about all of it at the time? You guessed right! Not one bit… I was too busy feeling sorry for my tortured state and the compulsion of having to learn Braille! Since I still had residual damage due to my patchy sense of touch, I could not use my right forefinger to read. This meant schooling my left one to do the job. Now do you get the picture? An uphill task for someone who was sufficiently ambidextrous.

Anyway, I did eventually get on with it. Reading Braille after learning the contractions and memorizing the patterns of dots forming different letters and words, my confidence grew. Not that I would have won any speed reading contests, but I was well on the road to literacy once again. Writing was another challenge. Holding the stylus in the correct manner, fitting the paper onto the slate and ensure it didn’t move and make patterns of its own free will was a nerve wracking task. Added to which when your teacher is a task master who laughs every time you crib, poke fun at you when you said your hand and finger hurt. He was relentless… pushed all my right and wrong buttons. Became my friend, mentor and guide. He will be most proud I am writing this today. it is to him I dedicate this sense of freedom and pride I feel in myself.

Eventually I did learn all there was to learn and what did I do with it? You’ll never believe it… I became a tutor myself! Doing what? Teaching Braille! I am smiling wide as I write. The man who taught me has never missed one opportunity to tell me and anyone who’ll listen, “this is the girl who cried the first time she started learning to read and write Braille. Look at her today, she is teaching others with such perfection.”

My road to freedom finally opened up when I started reading the Reader’s Digest in Braille. The thrill of reading something I did all the time cannot be expressed. There was more, much more to read. Since I was working with the organization that had rehabilitated me, I had access to a whole lot of material to read from the National library for the blind, London. I was thrilled. Alive once again for the first time in years.

There were many other skills learned along the way. Each making me more confident, sure of my world and prepare me to live independently once again. What had I gained here that was more precious than anything else? My sense of self and dignity! I was no longer a vegetable. I used my mind, hands and body to do things I wanted to do. Sure, there was always a degree of dependence; but, this was inter-dependence and symbiotic in its nature. There will always be times and instances when I return to the frustration of not being able to do things, simple things on my very own. But those come and go just as quickly. The new me had finally emerged! I was the new me, just as life and destiny had decreed.

While Braille is being used lesser with the advancement in screen reading technology, it has never lost its place as the script used by the blind person. Just as any amount of electronic texts can never replace print on paper; so can’t Braille be replaced. My fingers are slower than before on the paper, but it is just as sure as it was eighteen years ago when I first learned it.

This is why, when an organization working with the blind asked me to edit and compile a magazine in Braille, I was both thrilled and touched. There are many proficient Braille readers around me, ones who could fit the bill. But upon the suggestion of friends and the confidence in my being able to deliver, the responsibility came to me. To say I was excited and happy, was putting it mildly. This was serious business. There are many Braille readers who look forward to reading good articles. Being a reader myself who missed reading magazines all the time, I wanted to ensure there was something for everyone in it. Insight was thus born. After a lot of work and contributions from fellow writers, the magazine was finally complete. What the readers think of it still remains to be seen. The process of learning has only just begun and I am certain the road ahead will be an interesting one.

This afternoon my copy of Insight in Braille was delivered to my doorstep. Receiving it from the postman felt like receiving a citation for the work I’d done in my life as a blind person!(yes, drama once again! But bear with me… it was momentous!) I ripped through the packing and got down to the business of reading through right away! Would I have done it all those years ago? Would it have had the meaning it did today, then? No, to both the questions. Today, I see the script as an achievement, one that is unparalleled. It has brought me to a place of understanding and identity I’d never have known otherwise.

My life has come a full circle! I am finally where I’d have wanted to be all those years back when I’d only just begun!

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