There’s hope ...always

With everything that is going on in this country, I’ve been disturbed and sad and mostly ashamed of humanity. We’ve lost sight of our humanness and fighting/killing other human’s over what - 

So when I visited Jyoti Seva Home for the Blind today I went in hoping that my gloomy outlook to life changed and my god did it change. 

There were about 15 children, and the first exercise each of the children were given was to build a chair in groups of 4 each. They were given newspaper, chart paper, ice cream sticks, toothpicks, gum and cello tape. 

While I watched the children, I’m thinking in my head of all the challenges ahead:

1. They haven’t seen a chair ofcourse but they’ve sat and touched aplenty 
2. They would all have to agree as a team on the same version
3. The versions of the chairs in our heads could be different 
4. You are making everything by feel only 

But what a pleasure it was to watch them, they discussed, they giggled, they laughed, the chairs wouldn’t fix, the tape couldn’t stick because one person holds the object and another tries to tape it - but they DID build chairs. One team made two dimension chairs on the chart paper, one built a stool, one built a 3 legged chair(almost...one leg toothpick kept coming off). But they were able to put their vision(pun intended) of the chair together. 

I spoke to the kids about obstacles of my life, and I kept thinking they had bigger challenges, while they felt the same way about me. I was asked interesting questions “What do you miss doing the most now” “Did you ever want to give up” “How long did it take for you to become ok with your disability” . 

This was one of those days that I was extremely emotional (yes thank you pms) and I think I teared up through most of my answers. I think I was actually glad they couldn’t see me  because I was meant to be strong not an emotional wreck. 

What I loved the most was a little girl who stood up and said “I think today I feel I can do anything I want with my life and achieve all my dreams. My disability is by birth and I’ve been blessed enough to deal with it, it’s only sight that’s missing, your challenge is bigger because you weren’t born with a disability. So if you can do it, it’s easier for me”. 

The question really is - is it better to be born with a disability as you adjust early on or is it better to be disabled half way through your way because you see the other life atleast once? I’m not sure what the answer to that is. But it’s important to acknowledge that me having a typical childhood of school, college, corporate life has given privileges of skills, life lessons, awareness, friendships, human connectivity that probably makes me confident person inherently and therefore my disability does not dent it. And if I were born with a disability I might have the school, college and job - albeit a very different version of it. 

I’m struggling with the answer to it, but I guess the answer really lies in both cases in how we want to deal with the disability - our life depends on how we want to deal with the adversity, our choice to endure it with courage or unhappiness. 

I came away today full of hope, courage, love and gratefulness - and I so needed it!!

If visually impaired children can build a chair out of paper and ice creams sticks - I would like to hope there is scope and space to hold dialogues in this country...we just need to find the will and the humanness within us. 

Family...of blood and otherwise

A few weeks ago I met a friend over coffee, while we discussed a lot, one of the things he is struggling with is his relationship with his family. A line struck me... "Your family gives you a sense of security. It’s the place you are safest - I don’t feel that". He is trying to help himself and finding his way through a myriad of emotions/feelings /anger/resentment and he will find his peace eventually…hopefully sooner than later.

But the conversation stayed with me a few days.

I’ve survived what I did because of my family. My mom was/is the pillar of strength and resilience. She has been the place where I’ve felt the safest. Knowing that she is just there makes this easier. My family buried their emotions and stood strong for me. They made me feel worthy inspite of the lack of limbs and a bleak future.

Would I have been different if weren’t for them? What happens when your own flesh and blood does not give you the freedom to be you no matter how flawed or perfect?

The same weekend, I was part of Helping Hand's music benefit. I had two young looking gentlemen who came to pick me up.

Anyone who knows me know that I enjoy conversations with random strangers, and this evening seemed perfect to indulge my curiosity.

So my driver's name was Balu and the other boy Jason was his friend's son. As with any conversation in Bangalore, we started off with Bangalore traffic and if we were going to make it on time. As we sped along a relatively easy Sunday evening traffic, Balu mentioned him growing up at Helping hand's orphanage in Hyderabad.

And the nosy me needed to know more...

Balu's father left him at the orphanage when he was very young; he was told he had lost his mother. I asked him if the orphanage was a nice place, and he smiled (a big smile) and said he had the best time. “We were looked after well, I made some great friends and we really enjoyed our hostel life”

He worked at Coco Cola company in Hyderabad for a while, but moved to Bangalore as Jason’s father lived here.

He met his wife in the orphanage too, and they’ve been married for 10 years and have two children. Both the friends live close by and he said “We are each other’s family”.

He then spoke of how most of his friends found partners within the orphanage and how much they stayed in touch. He spoke with a lot of warmth about them. Infact they even took their vacations together.

Then he dropped a bombshell “I only got to know a few years ago that my mother is still alive and I do have an older brother”.

His parents separated when they were very young. They gave up the older brother for adoption since they were poor, and then he was given away to an orphanage. The parents could’nt afford to look after them.

He went back to his village and traced his mother. His mother recognized him, "I probably do look like my father, she recognized me” he smiled. “She doesn’t want to move out of the village. We do talk every other day, but she does'nt live in great conditions, and it hurts me"

What about the brother?

“He lives in Bangalore and is well off. He was adopted by a good family. He does'nt want to stay in touch with me. He's angry that he was given up”

After a while he said "I dont trouble him, because I make him unhappy" and then gleefully added "But my anni(brother's wife) is in touch with me".

Through the whole conversation, there wasn’t anger or a sense of being given the raw deal. He seemed happy with the family and relationships that were’nt driven by dna, but rather by choice.  

At no point did he ever say why me or spoke about how twisted destiny was.

The most important lesson that Balu taught me was that no relationship can give you security or peace, unless you have made peace with yourself and where you are..

Maybe our definition of family need not always be by blood, and maybe relations not of blood give you unconditional love and security too.

Maybe some relationship do not make us feel the way they are supposed to and maybe that is okay... 

Maybe our expectation of certain relationships are flawed…or maybe these flawed relationship which don’t meet the expected outcomes are required too….because these struggles help us see ourselves better…see our own faults and maybe hopefully we only emerge a better version of us.

Like they say, sometimes the darkness helps us appreciate the light better.

The Truth about Scars

The most beautiful thing about children is that there are no filters. They say it as is, and it’s refreshing. 

With kids, my hands or rather the lack of it, is a huge area of discussion - from discussing how they actually cut my hand, if I was/am in pain, to detailed discussion on the remnant palm, why is the left softer than right, why does the right hand have so many colours - there are no dearth of questions.

One of the questions that struck me was why did I did not make it look prettier - in their words ‘colour it the same’.

While I had just amputated, I hated looking at the mirror. I was ashamed, disgusted with the way I looked. I remember walking around with shawls to cover the scars and in my mind I just felt there was just too much of ugliness on display. I remember going shopping with a friend who pointed out a lovely top, and I telling her 'its sleeveless, too much for other people to handle it'.

At around the same time, I had to get a picture taken for a Government Disability Card, which required all my disabilities to be visible. This is a picture of me in shorts ensuring all limbs were visible. I remember being so hurt that day. I was angry, ashamed of that picture and I felt like my very dignity was destroyed. For the longest times when I passed through airport security I would put that card face down – I did not have it in me to look at it.

I'm not sure when I made that transition – was it was a moment or a phase? I today do not care what someone else thinks. I've figured it is someone else's problem if they cannot look at my scars.

I wear what I want, go where I am and no longer bother with the stares – I tell myself I’m a movie star(except I don’t have the money!)

Today I flash that Disability card with a lot more of confidence and aplomb...it’s no longer face down.

And to finally answer question on why I did not make my scars look prettier is just this – I am actually proud of them!

I've just read the english translation of "Ponniyin Selvan", which is a story based during the Chola rule. The extremely descriptive book, speaks a lot of the strength and valour of the men during that era. Vijayalaya Chola was matchless in his fame. He had received 96 battle scars. The later poets sang 'the king who got twice three number above ninety scars and he who wore ninety six injuries like ornaments on his body"

It got me thinking...

I'm wearing my scars as proudly as Vijayalaya Chola did, as they are a testimony of my battles both physical and mental. They are a reminder of my journey and what it took out of me to accept this and finally be proud of the person I became - the lack of limbs a minor impediment. 

And even more interesting is that all of us have scars - some physical that you can see and most metaphorical. I do not think there is a single person on this earth that doesn’t have one. Some of these scars take us to our childhood where these scars stood for being fearless and taking risks or just plain happiness or stupidity. And some scars take us to darker places.

But if all of us could just accept and be proud of our scars because they stand for our journeys and triumphs mostly – the world would be a less darker place.

They teach us that the wounds always heal, though the scars stay.

And with time these scars just get lighter and sometimes accidentally when we run our eyes or hands over them they remind you of all the emotions that caused them, but most importantly I hope you can remember that you triumphed over them. 

Best of both worlds!

Having lost a baby earlier, I kept the news of my pregnancy under wraps until I finished the first trimester. I was obviously elated that I would be a mother, but there was also a sense of unease - would I totally suck at the role? Would I even meet half the benchmark set by my mother who ticks all the boxes of exemplary behaviors to be exhibited as a mother? The Universe intervened and I lost my baby in the bargain to stay alive. 

We further made the decision that we weren't going to have children.  

Was it an easy decision? Absolutely no. 

Was it a practical decision? Absolutely yes.

Do I miss motherhood? In teeny bits and parts.

I usually definitely want to ‘look’ pregnant (please note only pregnant) when I see women with large baby bumps. My aspiration…Beyonce at the Grammy’s. Did you see her? She practically looked like a goddess, she had this glow, she looked absolutely ravishing displaying her baby bump – and in that moment I wanted to look like her.

I miss it in parts when my friends have an “awww” moment with their child, and you wonder if you are missing something in your life.

I miss it in parts when kids say the cutest things in the world.

Do not fret –I’ve had my fair share of cute kid moments.

My most vivid recollection, has been a 5 year old boy, who stopped me at the stadium and asked me with both his hands on his hips “What happened to your hand?”. He had a few of his friends in the background. Now I wasn’t sure how to respond to that. Should I tell him it started with a fever and have him fear fevers for the rest of his life or should I tell him about the bacteria. I looked around for a responsible adult – then of course I remembered I am the bonafide adult here. So I smiled and said “It was caused by an accident”. He said “What kind of accident”? I said “A car accident, I was hurt very badly and the doctor had to take my hands off”. He mulled over my response and asked “Did it pain?” I said “Yes, for some time”. I then asked him “Do you want to touch my hand?” He immediately touched it, smiled and looked back at his waiting friends “It’s so soft, come touch and see”. It was as simple as that.

Nila, my friend’s 5 year old at her birthday party dragged her friend towards me. I was sitting at a table, with my hands on my lap. She forces the friend to look under the table and says “See, no hands”. The girl obviously was in shock and said she was scared to look, to which Nila pats her and said as a matter of fact “Why are you scared? She is not scared. And she has no pain, and she is my friend”.

Veda, my friend’s 4 year old was watching a procession of goddesses from the car. Pointing at one of them, she said “She has four hands, why can’t she give two to Shalu?”

A little girl walked up to me at the stadium and asked me my name. She then smiled and asked me if I was coming to the stadium the next day. The next day she arrived all smiling. She stood around me for a bit, and then finally asked “Don’t these (blades) hurt?”

While I was running at Cubbon park recently, I passed by two little boys. I heard one say to the other “See ra…see her shoes”, to which the other said “Super cool da”. And ofcourse they were referring to my blades.

All these moments take you by surprise. Each of them reacted to disability in whatever way they had deemed fit, and the most beautiful part is that they did not come with judgments – it is what it is!

I’ve learnt you don’t need to be a mother, to have your ‘aww’moments.

When the Universe takes something from you, it always gives you something in return, in its own way balancing it out. In my case I became “the cool aunt”. This gives you an opportunity to spoil the kids rotten, have all the fun, you can teach them the worst things and learn a million things from then – AND then you don’t need to worry about their bed time or if they ate or pooped or if they slept or fret about all the thousand other things...they have their mommies for that!! 

The best of both worlds.

Seeing....a function of more than your eyes!

My disability journey has not just opened my world to different and diverse perspectives, but also to a set of very very interesting people.

My first interaction with Divyanashu was post the marathon run. I got a message on Facebook and his profile picture had him with Senior AB...I was'nt sure how to react to that!

The message contained the usual congratulatory messages and telling me how amazing I was (I absolutely know that!!). He runs a nonprofit organization which promotes adventures sports for People with Disabilities, was blind and was into adventure and outdoor sports ...all in the same sentence, and wanting to get in touch.

Our conversation started as extremely polite, which lasted for about five minutes. We broke ice when I asked him if he grew drugs to fund his NGO(he’s confirmed he does’nt). We eventually discovered we were both mad people and had the same crazy sense of humor...pretty much cut out of the same cloth!

Recently he travelled to Bangalore and we decided to meet. He was to travel straight from the airport and I was to meet him for lunch. 

Of course much after confirming the plans, realization strikes!!

He's going to uber, and I’d probably need to give directions ...how do I pick the call? Well let's say if we manage that, how do I direct him through the stairs.... What if I fall and he falls too... And then of course how do I eat? Well I can't feed him... Way too many minor details to consider!! So of course Bindu was invited for lunch.

While I got ready to meet him, I thought does it matter if I did make the effort, how's he even going to appreciate it? (Vain women I know!). I could be in my PJs and he wouldn’t know.

The first impression of meeting him was just sheer warmth! You know when you meet someone, and it just clicks and seems like it’s not the first time you are meeting them. 

While we steered our way through the restaurant, my thought runs through how this would be first interaction with someone who is blind, there are no reference points. In hindsight, it’s what someone goes through when they meet me for the first time - no reference point!

We sat down, and ordered our drinks and food. It was interesting to watch, because he just got on fine, as far as he was nudged in the right direction. The conversations flowed, and I realized I had so many questions. 

Do you see with more than your eyes? Do you meet someone and feel their aura? Do you visualize things? Is it difficult? And the one question I did not ask, but wish I did, how does he decide what to wear (he lives alone)?

Divyanshu turned blind overnight when he was nineteen due to glaucoma . I'm thinking that it could be as disturbing as to lose a limb. I'm not sure what it feels like, but like any devastation in our lives, we eventually still cope. The beauty of his story is that he chose to still lead his life on his terms. He is India's first blind solo glider and like that wasn't enough he recently tandem cycled 500 plus kms across Leh-Ladakh... Gobsmacked aren't you!?

While I was processing this entire new world, I felt maybe it was a great world, where you meet someone and you’re not judging them for their looks or for what they wear... You truly just listened and liked someone or not for what they said or what you felt... You cut out the noise and preconditioned notions. 

It's a world of listening, touching and feeling... In a sense the perfect world - a true human world.

Divyanshu spoke about being a very visual person; he creates pictures of everything in his head. I loved what he is said "everybody in my world is beautiful.. I imagine everything to be very beautiful"

What a beautiful thought!

Our eyes functionally let us see, but I guess to really see and feel you need more than your eyes, you need a beautiful soul and a big canvass to paint whatever picture you want.

You can choose to make it as beautiful or as ugly as you want...

Urban Legend...Nah Just Super Specially Abled

Blade Runner...Survivor...Wonder Woman...Urban Legend...

A few descriptions of me over the last few weeks...well how do I feel about them?

Very overwhelming…Larger than life!!

Did I plan on any of this? The answer is a plain 'No'. If you had asked me 4 years ago or in fact even before that if I’d ever run a marathon…the answer would have been ‘No’.

The whole thing started off with just a way to be healthy and being able to achieve the very mundane tasks of walking, climbing up stairs, sitting and getting up from a chair. Over a period, it just became something I began to enjoy. My legs began to feel like an extension of my own body and not an add on. Just the pure freedom to run, feeling free...and in some twisted way a control over my own body!

What the hell I can't brush my teeth on my own, but I can run without anyone's help!

These are my moments of looking up in the sky, and saying a silent "damn you, there's no stopping me"

And I don’t think I chose running…Running chose ME!

Was it easy?

It was hell! A good hell...

Well the original plan was to run with my legs (for you guys prosthetics legs). We’ve (Coach Aiyappa and I) been training for about two years. I wake up at 5 am and work out at Kanteerava Stadium. I go for Pilates with Anisha Naidu 2-3 times a week. Both their primary goals has been to make my life as miserable and tough as possible (You need to read this as "build strength and endurance). It's been a journey - one that has required me to push myself every single day. Not just my body, but realising that it's my mind that makes me go the last 100 metres.

There were days at 5am in the morning when my alarm rang that I questioned my own sanity "What the hell is wrong with me?" "Do I really need to do this?".... But something did push me! I came everyday from the work out pooped....but also rejuvenated by the sheer sense of accomplishment and feeling that I grew my wings...added a few bones and feathers each day....my wings of freedom!

Then the blades arrived. We went for fitment for about a month, I got the blades about 2 weeks and 2 days before the run.

What do the blades feel like?

Imagine yourself on really pointy high heels and then imagine being on a trampoline...if you are a man who has never worn heels...I cannot explain it to you!

I look and feel totally bad ass in them!

They gave me a natural bounce and push. It gave me more wings.

How did I feel on D-day?

Obviously pressure! I feel exactly like I was going to write my board exams. There were 20k people, the whole place was buzzing with energy.

How I felt through the run?

It was a mixture of emotions – like a Bollywood movie, the day had every bit of excitement, song, dance, music, high emotions, action, love, drama!

Started slow, as it was a mad rush of people and I did not want to fall. The first 6 kms were great, and then I felt dizzy. We were targeting the 90 min finish, the break put me back. At a point I was totally disappointed with myself (still am). We then decided to finish. We had to stop twice again to adjust the legs. It was an extremely humid day, and the prosthetics get extremely sweaty. So once your sweat builds up, the legs get extremely uncomfortable, so we need to remove them and put them back on. Ofcourse our Bangalore roads - just adds to the much needed drama!

The one thing that helped me through this besides having people that I love with me, was the number of people through the run who cheered for me or just passed by with a thumbs up – my running this marathon was a re-affirmation to our own selves that we survive – no matter what!

We finished! Phew! I was done and I just wanted to find a corner to sleep.

By the time I recuperated I felt - Exhilarated. Relieved. Happy. Could I have done better? An emphatic "Yes"!

Post the run I've been repeatedly asked "Why running" "Who is my inspiration" "What motivated me" "What is my future goal"...

When I sit back and think...the answer is "I really don't know"

The script to my life changed in 2012 and after that I have left the universe to take me where it chose. I just do what I do. I do not know where I get my strength from or how I endured it - I just do!

Did I ever plan to run, take part in a marathon or be on the first page of a newspaper? Never ever part of my script... it all just happened! I did not plan on losing my limbs in the first place remember.

Why running... just because i can! I have my wings fitted on and I don't plan to ever take them off.

Motivation... because it is the person I am! I refuse to give up without a fight. It is in my Malayali DNA or I'm just too stubborn probably.

Goal...only one "be happy" “live in the moment” - NOTHING else in the world matters

One thing that's niggled me through this entire process has been a few reactions from people around me "She still has a big smile" "You still look happy" "Did people treat you differently" "Do you feel bad when you go out with your friends"

Why do we expect someone who is disabled to look unhappy? Why do we expect someone who is disabled to lead sad and miserable lives? Why do we not expect someone who is disabled to party? Why do you think a marriage will fall apart after a disability? Why don't we think that it is possible to just accept your disability and lead super normal lives?

Clichés isn't it?

Your disabilities I've realized are only in your mind.

Living in the moment

How do you deal with a life change…from being fully charge of your life physically and mentally to seeking help to brush your own teeth?

Honestly…you just do!

People who know me from work or from anywhere before in life, have a recurring conversation “You haven’t changed a bit” “You are still crazy” “You still have a big smile” – well I haven’t changed internally, externally yes! I believe I am the new improved Shalini V 2.0.

I went through various phases to get to where I am today. To look at the mirror and not find anything amiss, other than the question most women ask “Does this dress make me look fat?”

Having said that, it's not all blue sky and yellow tulips - I do have bad days, but they are fewer and far between.

The first three months were easy, because I believed I would be back on my feet and life would go back how it was.....until the gangrene set.

Before my brain and heart accepted it, my nose smelt the rot!

It was probably the worst thing to wake up and  go to sleep to – the smell of rotting flesh and disturbing signs of what is to come. We were at that point working with a doctor on an alternative treatment to see if we could regress the condition.

I hated everyone, and I just shut the entire world to my life. I asked for no visitors, no friends, no family – I did not want to believe in my fate, neither did I want people to see me in this state!

I had numerous conversations with myself, went through my entire life with a fine comb looking for something that would explain this. Obviously it's bad karma – I must have done something bad to deserve this. The only thing I could come up with a few nasty conversation(I am known for my acidic tongue at times), a few lies, nothing that would explain the quantum of my suffering both physical and mental.

I for a period in time used to go to the hospital to have parts of my flesh removed by doctor. It was painful, I bawled like a child, the nurses and people around me shed a tear probably for my fate! It was agony to say the least...on the bright side I got to eat the best bhel puri ever outside the very same hospital!

Then of course Ayurveda happened, a leash of new hope and injecting a whole lot of optimism. The gangrene went and things were looking good. The crazy concoctions though left a bitter taste, filled my soul with hope.

In between this, a setback. I managed to break a bone in my left hand(amazing right!). We found a brave doctor who said he would try fixing it. Being rolled into the OT, while I was prepared for the worst, I still believed I would be fine. Post surgery all I could see was a massive dressing on my left arm, I kept trying to see if it was the full hand or half of it. I beckoned a nurse and asked her, she looked extremely uncomfortable. She faltered, cleared her throat, looked around and in a quiet voice said “It's amputated” and walked away.

Everyone visited at the hospital, my room were filled with people ‘trying’ to accept what happened, unshed tears, nervous laughter, everyone being brave for me and themselves and more than anything else not sure how to deal with me or the uncertainty of life itself. I think all of us lead our lives reading the paper, watching news, on the internet read stories like this, but we believe ‘it would never happen to one of us’ – well reality arrived in our lives.

Six months later my right hand auto amputated. For those of you who have not heard of this before, it literally is the body shedding a part it no longer needs. In my case it fell into my brother in law's hand. A look of disbelief passed through the room, my mom the only witness. While we did not know what do with situation, I knew this was a sign – a sign to move on.

We took the decision to go ahead with amputating the legs the next month. I was relieved - I knew I could only move forward now and there is no stopping me.

I arrived at the hospital with the brightest purple nail polish on my feet. If my legs were going out, they were going to go out in style!

How did I go through all this – I honestly don’t know.

I lived each day at a time, made small achievable goals for myself, read every book I could lay my hands on and like my life depended on it, learnt classical music, looked forward to friends visiting – more than anything else hoped and believed that tomorrow will better…I knew tomorrow will beautiful because when you hit rock bottom, the only way for you is upwards!

So walk in the rain, stick your tongue out and catch the raindrops, hold hands, feel the grass under your feet, smile at strangers, admire good looking men/women, fall in love, call someone you have been meaning to, give big tight hugs, kiss a boy or girl(if that's your thing), flirt, dance till you drop, wear your red lipstick, join that class you have always wanted to, buy the shoes you want, write a book, sing aloud, learn to play an instrument, bungee jump, sky dive, travel to Antarctica for all I care – LIVE TODAY AND LIVE IN THE MOMENT - you don't know what is going to happen tomorrow!