Wednesday, May 22, 2019

Yours

I track the clock that ticks where you are,
I track the dusk and dawn of the place where you are,
I track the seasons of the place where you are,
This is how I remember you and connect with you,
from my place to the place where you are.

"Its morning there, you've woken up",
"Its night now, you must be preparing for sleep",
I think of this and try to imagine your wakefulness and sleep,
these are the ways in which I connect with you.

The world seems huge and small at the same time,
the distance and seas between never seemed huge.
Perhaps, whats the measure of an abyss,
or the measure of extreme closeness?

We talk, I know, the evidence of this conversation,
lies not in paper or voice,
its silence, our language,
I speak to you, I hope you hear its drum.

Its something I am conscious about,
something unprecedented,
either it is insanity or it is bliss,
either it is madness or it is godly,
but all I know is :
its something that I observe,
never act on. 
Perhaps, this is the way, a way, 
the only way,
To be Yours.

Saturday, May 4, 2019

Silent Profound

It was Saturday night, around 8pm. I had finished my dinner and was watching a documentary on history of London. I heard a knock at our home's door. Anticipating that it must be someone related to my flat mate, I did not bother assuming that Rini would open the door expecting some food delivery. Quite unexpectedly, some 3 minutes after Rini must have answered the door, I heard a knock on my room's door. In my casual tone at home, wondering why Rini was knocking at my door, I uttered, "its open Rini".  The door knob turned and the door got opened. I looked up and a shiver ran down my spine, my body froze, my eyes took sometime to process what they were seeing. I immediately got up from my bed and just stood looking at the person opposite to me.  It had been close to 4 years since we had last seen each other and 3 year since we had last talked or had communicated in anyway. 

I went closer and invited her further inside my room, offered a seat and quietly closed the door.  None of us spoke anything; it was absolutely unreal for me, a mini-shock to me. I just sat at a comfortable distance from her but did not say anything, she also didn't say anything. For a long time I just kept  looking into her eyes trying to find out the reason which must have brought her here and then to identify the courage it must have taken her, especially, flying from Queensland to Buenos Aires (the place where I currently live). I did not speak anything and was waiting for her to speak; although this decision not to initiate the conversation was a conscious one it was rather unlike me. I am the one who initiates candid conversations even in awkward moments; but I thought that at that time it was important to hear Aisha speak.  She was twisting her fingers, may be guilty that she had come, thinking may be that it was a stupid move or may be thinking how to initiate the talk and explain the reason or wish to visit me out of blue. Finally I realized I'd have to initiate the conversation. So, I asked her in quiet joyful tone how her life was and what she was doing these days. She replied that she was working with an Australian firm as a Technical Lead in Machine Learning Division and was in Buenos Aires for a 2 day official trip which got over 2 days back. Its funny that she still found me at the same place where I was living when she had left to Queensland unannounced. Must have been a wild move of hers to check if I was still living here and I am guessing that seeing me must have shocked her. She told me that she was hungry; I got up and went to kitchen. That night I had prepared brown rice and boiled beans, peas; served her hot with some salad. I was glad that she was eating at home; sharing food and meal times was one thing which had bought us closer in our time; some 6 years back. 

After eating she said that she was getting married. I said, "Ok, I am very happy for you and your partner. I wish you all the best". She showed me the wedding card; a plain white glossy material sheet in which names of the couple were mentioned. I read, "Arianne"; tried not to react after reading the name and my smile only widened. In that moment, I understood why she had come to visit me. I hugged her and this was a closure waiting to happen. 


(A work of fiction)

Wednesday, April 24, 2019

One Yes

We wait for that "One Yes" in life, 
The "Yes" that will change everything, 
The "Yes" that steers us closer to our dreams, 
The "Yes" that'll remind us of all,
the struggles, discomfort and perseverance, 
we've been through and 
then catapult us into a responsible role, 
wherein we remind ourselves everyday,
'I fought for it, the battle was long, 
And now I need to further sharpen my sword". 
The responsibility is astronomical after, 
you get that,
"One Yes You Aspire For, Dream about and Work towards";
You understand everyday stake of life all the more, 
after that "One Yes" and
show everyone what the years of preparation and experience,
have done to you. 

You sprinkle the lessons onto everyone you meet, 
You make them believe in the glory of long battles, 
That "One Yes" will change everything, and
you'd never remember those thousands of rejections...
That "One Yes" for which you have been dreaming forever, 
The world won't understand, 
Your family will be puzzled, 
by your "ineffective" stubbornness to carve your life. 
Your friends will diminish somewhere, 
you alone would become your family and friend, 
But that's what life journey is like, 
picking yourself up,
piece by piece,
"NO" by "NO", 
not bothered but only stronger
for the "NO" instills resilience, courage and focus.
Dream, dream of a better, more fruitful life, 
a more meaningful life,
And fight for it, 
even if you have to fight your whole life;
there is peace in fighting for something you
feel for and believe in...

That "One Yes" is coming your way, 
Things might fall apart during your quest, 
People gone, family silent, 
Hold on...for you know nothing else than
Your Dream...Preserve it, save it, 
for it will Save you and your life, and 
then you'll save the Logical Mankind. 

This is your journey, fight it, 
but never forget to plant Love and Kindness along, 
Only a hungry person knows the pain of starving, 
Like you, your brothers and sisters are waiting for their "One Yes", 
support them, lift them, encourage them. 

We are all on same path, 
our ability to dream unites us, 
our quests make us one, 
our scars glorify us, 
and our perseverance binds us and brings
us together so that those too poor to dream,
can dream and aspire, 
and witness that sunrise that they desire. 

That "One Yes" is coming your way, 
believe me. 
These "NO"s are preparing you to handle that "One Yes", and
to respect it and realise the responsibility,
that'd come along...

That "One Yes" you deserve, 
is coming your way, 
It'll change everything, 
That "One Yes" you have been waiting for, 
will usher a life that you dream of, 
your aspired life, with much more meaning and devotion...
its coming your way. 

Trust the process, 
Its a preparation, 
This resistance is making you, 
stronger, focused, resilient, 
Your Dream is your identity, 
Trust Lord and keep working. 

It may take 3years, 5 years or more, 
but thats not how measure growth, 
the person you become in the process
is your reward, as you gear up, 
to fight series of battles after that,
"One Yes". 

That "One Yes" is coming, 
gather your tears, 
gather your "Thank You"s. 


Wednesday, April 10, 2019

"Do you like me?"

This post relates to something that happened with me last Saturday. 

I was going to play frisbee with my team in HSR layout, Bangalore. We are preparing for an upcoming mixed frisbee tournament and I must admit that I am in love with this game! So, there I was walking from the Agara lake bus stand inside the road in HSR layout. I had walked, I think, some 400m when I saw a guy coming from the opposite direction, muttering to himself or should I say just muttering to everyone he was passing by. He was muttering, "Do you like me?". When he came close to me, he stopped. I could sense from his body language that he was restless and unaware of what he was doing. He stopped and asked the same question to me, "Do you like me?" . My first impression of the guy was not threat, he did not seem like an eve-teaser nor a goon; he was well-dressed, seemed like my age only, may be younger, I really don't know but from his body language I understood that he was not in the right state of mind. He seemed extremely restless and deeply hurt, as if he had momentarily lost his sense of self-esteem. When I had first seen him coming from opposite direction muttering to himself, my first instinct was to keep walking by and avoid him. I mean, all of us would try to maintain some distance from a person who does not seem to be in self-control (not necessarily, in an inebriated state) in a public space. But he stopped right in front of me; I did feel taken aback I would not deny, I also felt calculated fear but he did not look like a threat to me. So, when he asked me , "Do you like me?", I replied, "Yes, I like you". Lost as he was, he hardly paid heed to my answer. He asked my name, I replied, "Yesoda". He asked my father's name. Not wanting to divulge too much, I just mentioned "Ashok" (usually I would say complete name with appropriate prefix). And then he again asked me, "Do you like me?". I understood that he was just muttering this question to everyone around. I again replied, the second time, "Yes, I like you". After that answer, he just kept walking on his way and I also proceeded on mine. After he had crossed, I stopped after some 100m and turned back to see what he was doing. This guy, however, kept on walking, perhaps still muttering because his body was in an unusual motion which is related distantly to that of only walking. 

This was the incident. I will not deny but I was indeed taken aback by fellow random person's puzzling halt in front of me and then the question. But I feel that something came onto me during that moment, something which just held me tight and made me answer him in affirmative rather than just scurrying from there. It was not completely me who stood there and answered him, it was , something much more powerful and much more fearless. I am really not the kind who'd entertain suspicious characters on road, let alone tell them, "Yes, I like you" but I feel and I felt this at that moment also when he was standing right in front of me that he needed to hear that, that he was not only liked but loved. He seemed deeply hurt and partially lost to me and may be that was why I chose to reply to his query while maintaining a bold body language myself and caution at the same time. 

Looking back, I know he must have been troubled. People around us are mostly troubled; you, me, all of us are troubled due to something or another therefore, there is every reason to plant Love and Kindness around. I do not think I acted in that manner, I just feel I was made to act in that way by something that came onto me precisely at that moment. 

I WAS MERELY AN INSTRUMENT OF GOD'S GRACE AND WE ALL CAN BE, IN FACT, WE ALL ARE. WE ARE SO BLESSED, ALL OF US. 


Tuesday, March 19, 2019

Making Peace with Past Relationships

We all would agree that making peace with former relationships which involved love and romance is tough. We do not finally arrive at a time when it all just gets wiped off from the memory, but its a process. A process which leads us back to memories but does not invite pain/resentment; there are lessons buried deep in separations much more than those buried deep in togetherness. Making peace with past is definitely tough and everyone's experience is unique. Some choose to inflict harm on self, some choose to make life difficult for the "claimed beloved"often indulging in actions amounting to harassment without being mindful of it, some choose silence, while others choose to be indifferent to their feelings (which I believe does no good to them). Everyone's pain is unique and journey individual, a journey that only they can take, a path only they can walk on, a medium of self-cleansing and courage building that only they can understand.

Many a times people get deluded during this process; falling back on past times, brooding over what was, what could be and what should be,  can be a real dangerous exercise and can actually prevent people from looking at the beautiful opportunity that life presents them with. At the same time this exercise also insults the moments that two people had created together. It is always a choice of how to behave during and after an emotional separation - with grace and gratitude or with that panic, anxiety and negative sense of loss. Of course, humans make mistakes and not everyone can be assumed to embrace tough times with calm. Everyone has right to their own journey to closure; the important thing is that their emotions are out, that they do not hold up and suffocate selves. However, often in this attempt, people end up doing actions that can be insensitive and disrespectful of the other person and the relationship that was. As a result of which even the moments of beauty become times of nightmare and further degrade the quality of memories a person might potentially carry. The phase of separation is a delicate time, a time so tender that it demands to be handled with care. The responsibility during that time is not only for the relationship but also for the life after it, a renewed focus on self and a better approach to future relationships. 

I strongly believe that we require such circumstances in our lives so that we realize that when fallen, only we can make ourselves get up, wipe our clothes and face, start anew and work towards more adventurous chapters of our life. I cannot emphasize enough the deep treasure that such moments carry within them. But it all depends on how we perceive the situation; if our eyes are too clouded by possessiveness, sense of loss or loss of self-identity, we might lose a wonderful opportunity to become better individuals and humans, even lovers. Our task in world is to spread affection, love, instill trust in people that they can accomplish their dreams. These are the important messages that we'd like our lives to stand for. 

Heart-breaks are never beautiful or pleasant when they happen, they do take a toll on our emotional health and frequently invite the memories which pinch us. All of us have felt so and that makes us lucky! Because our hearts have opened a bit, our ego has lessened a bit and a brush with self-weakness has taught us humility and empathy. No one wants pain, everyone wants happiness and in that way, everyone is similar to one another. I do not ask you to forget everything and be indifferent to your self-cleansing process. But I request you to honor your journey, to take time to bereave, allow life to teach you love and reveal yourself to yourself. Fundamentally, what really should matter to us is that our beloved or our lover is safe and peaceful wherever he/she is. 



Sunday, January 27, 2019

MOCKING OI ON ITS FACE : LIVING AN INDEPENDENT DIGNIFIED LIFE

Indian Osteogenesis Imperfecta Foundation (IOIF) had an opportunity to interview Sirisha, a person with Osteogenesis Imperfecta. In an hour-long conversation with Sirisha, we got to know about her life and its finer details and how despite all odds she continues to work independently in Bangalore away from her parents and homely care. This post attempts to capture the eventful life of Sirisha and intends to spread the message to families and people alike that the greatest truth of life is our inner strength in front of which every seeming incapacity crumbles and surrenders.


Sirisha
Sirisha was born in Chittoor town district in Andhra Pradesh in the year 1988. The medical staff was not aware of OI and handled her as they would handle any infant born without OI. During birth she experienced multiple fractures in several parts of her body. However, a recognition of underlying cause could not be made and Sirisha was continuously writhing in pain. Observing these incidents, the doctor advised to take the baby to an orthopaedic doctor. Within 30 minutes, as the orthopedic doctor checked her, Sirisha was diagnosed with Osteogenesis Imperfecta. With the hope to find a cure for their daughter, Sirisha’s parents took her to several hospitals like NIMS Hyderabad, Vijayawada orthopaedic center and AIIMS. The diagnosis, however remained the same and was confirmed by all the doctors. By this time the family had understood that there was no cure for the condition.

Growing up she was home-schooled till 7th class mostly by her mother. It was in her 7th class that she went to school for the first time to write exams. She eventually succeeded in writing her 10th class exams but after that there were some challenges in getting admission to pre-university. After concerted efforts from her family and with the support from school management she was able to get permission to appear in exams and continued to be homeschooled. She had opted for Commerce stream. She enrolled in BCom(computers) and successfully finished it. Post graduation she enrolled for an MBA and simultaneously she was also preparing for some competitive exams. Eventually, she joined a private firm as a data entry operator and handled multiple responsibilities including that of customer care executive, quality analyst person and also a mentor to people with special abilities at the workplace. She worked there for 3.5 years and currently she is working in a foreign bank.

Sirisha with her parents.
The biggest decision Sirisha took was to move out of her hometown and come to Bangalore. Her father was a big force behind this decision. She clearly remembers what he had said, “Now that you are a grown up adult, you need to learn to take care of yourself”. It would not have been easy for him to say that to Sirisha, he knew the challenges involved, yet he encouraged his daughter to explore and experiment with life in her own personal ways. Additionally, the motivation behind this decision she says was also to prove herself and to provide a peaceful response to those people who had objected to her education while growing up. Sirisha mentions that she had to hear statements like – “What is the point of writing exams? She has to be carried all the way to the school. What is the use of education to her?” and much more. Who would have thought that this girl would be using all these doubts to cultivate inner strength and moulding a dream? With exemplary demonstration of positive rebel attitude Sirisha has managed to turn those anxious about her life and future into her admirers.  Obviously it was not as easy it sounds on reading; growing up and embracing her condition involved momentous efforts and an attitude change. Imagine a girl with OI coming to Bangalore on her own and setting up a comfortable dwelling. She currently lives in a paying guest accomodation with the help of a caretaker.

Sirisha also mentioned about her colleagues in office, especially the MD, who have been very cooperative and supportive. She also learnt Kannada to mingle with the employees and the Bangalore community.  We asked Sirisha what her message is to the parents of kids with OI after experiencing the way her parents brought her up. She says,
“Why do you think the child has a critical condition? The child needs little bit extra care and the responsibility ought to be to nurture the child such that he/she can live independently at any cost. In that respect, education of child plays an important role. See that you are making your child fiercely independent”.
Sirisha is also a National Awardee in the Best Employment category.

Sirisha receiving the National Award.
IOIF thanks Sirisha for sharing her valuable time with us and letting us know about her life. Sirisha’s life is a testimony to the fact that OI does not have to stop anyone from becoming a useful asset to the society and lead a life of financial independence and social dignity. IOIF is also immensely proud of Sirisha’s parents.

(This article was written by me for Indian Osteogenesis Imperfecta Foundation).

Saturday, January 12, 2019

My trip to Swasthya Swaraj : Computer Lessons

This is a post in continuation of my attempt to share lessons from my visit to Swasthya Swaraj Society. Swasthya Swaraj is a secular, not-for-profit, organization working towards making health a reality for the poorest and unreached. Swasthya Swaraj has set up a model community health programme – Swasthya Swaraj Comprehensive Community Health Programme in the tribal-dominated Thuamul Rampur Block of Kalahandi district in Odisha, India.


During my stay at SS, I also took lessons in Computer skills development, mainly Microsoft Word and Powerpoint. The total number of students were 6, so I divided them in two groups of 3 each and focused on practical training. I tried to teach them how to create documents in MS Word with practical knowledge of headings, font, table creation etc and in MS Powerpoint my focus was to help them understand its utility and how it can used as a tool to disseminate information or present some reports/findings. These sessions were of longer duration and mostly took half of the day. The students had a playful and experimenting attitude. As I was observing the students, I went back to memory lane to my college days when I had felt the touch pad for the first time on laptop (2009) and was struggling with it. I remembered how I had learnt it - observing an M.Tech student using it. Getting comfortable with mouse and touchpad takes some time and the students were experiencing it. They exhibited quick learning curve in computer and whenever I’d ask them before a class, “Computer or Maths” they used to declare “Computers”. My decision would often be based on what they needed more practice in and mathematics always had an upper edge.

Students of Diploma in Community Health Practices learning in Computer Training Class. 
My decision to focus on technology and mathematics in an applicative and practical way was based on my own experience of their tremendous utility in day-to-day life. I usually read a lot on women in STEM and the opportunity at Kaniguma presented a good platform to seed that in the minds of students. As most of things these days are based on technology and computers, I felt that it was important to show them how computers make our lives easier in work-related ways. In the brief time that I had I tried to tell the most important things, tremendously helped by Mr. Sudhakar Reddy. I taught them MS word by giving them writing assignments with features that involved experimenting with multiple options in MS Word. These assignments were done in class as I helped them when they got stuck. Thus, it was sort of, a training like that on a sports ground. I also helped them understand the use of tables and how they can be inserted in a document. Later on, all of us learned MS Powerpoint by creating a presentation titled, “Father of Nation - Mahatma Gandhi”. Through this activity, I intended to make them understand the concept behind Powerpoint and its utility. I also emphasized on the difference between ClipArt images and images saved on computer. BSNL is still not available at Kaniguma village, hence internet is not available except for that on mobile devices.


I was satisfied by myself with the computer classes more than those of mathematics classes, yet that is not a delight to me particularly. To my unaware-city eyes, most things looked normal but I know that beneath the appearance of peace and silence, lie truths of tribal health challenges and acute lack of quality education. These very few personal observations have bombarded me with questions and I see myself tongue-tied. Something appears to be changing in me. The city noise does not knock on my ear drums now; I choose to retire with myself and my thoughts in my room and all that runs on my mind is Kaniguma, those 12 days at Swasthya Swaraj and so much more learning that I can never imagine.

Long Live Swasthya Swaraj.

My trip to Swasthya Swaraj : Teaching Lessons

My trip to Swasthya Swaraj (SS) was a balanced mix of multiple experiences. I got the opportunity to interact with young students of Diploma in Community Health Practices (DCHP) at Kaniguma village, the staff at Health center set up by SS and also spent good amount of time working in the office of SS at Bhawanipatna, Orissa. All of these experiences are close to my heart and have added value to my being. In this post I would describe my experience of interacting with the girls. In these sessions I focused on revising basic arithmetic concepts, mathematics for community health, developing computer skills through hands-on training and English book reading. I spent close to three sessions on three different days with the girls. Although my experience is very limited yet it has given me some food for thought which I try to share here.

In the first session I decided that it would be a good idea to have a detailed discussion on BMI (Body-Mass Index) with the students. Naturally, the discussion began with malnutrition and how it is assessed. I helped them understand how BMI helps to classify whether someone is severely malnourished or of normal weight. The theoretical knowledge of girls was adequate and they responded well to my conceptual and situation-based questions. Obviously, they were hesitant because I was a new face to them but I ensured that it did not smother the discussion. During the class then, I asked them about the mathematical formula for BMI. This took time and eventually we all arrived on a consensus over the universally-accepted formula for BMI. Later on, I asked them compute their own BMIs and classify self into the three categories of BMI we had discussed, namely, Normal, Overweight and Obese. This exercise would open doors to big and significant revelations to me and would then direct all my efforts into something more fundamental than BMI : addition, subtraction, multiplication and division. Computing BMI involved handling decimal numbers and division and multiplication; the students struggled with it and I clearly was not happy. My assuming mind was expecting that high school graduate students would be adept in these basic operations but I realized that we needed to work hard on these. This realization, I’ll be honest, was not quick, it was preceded by anger and a psychological shock. I had read in multiple reports worldwide and also national that students find it hard to read and perform basic mathematical operations. Somewhy I had not really paid attention to the veracity of those findings and never cared to think over what it meant and my first session made me sink within. “How could high school graduates not know division and multiplication?”, I asked myself recurrently. I did not arrive at a satisfactory answer. Postponing the question to my night-time rumination, I composed myself , wiped the white-board and decided that it was more pertinent to discuss and make them practice sums involving basic arithmetic. The anger and psychological shock was morphed into a self-discovery; I was not so much angry on them but on myself for I found it challenging to teach them those concepts. This was another revelation and it pinched me harder than the first one. It was a brush with my own incompetence and I knew I needed to work on it and do my homework. Much thanks to one of the students who eased my job and as she explained certain exercise questions to her classmates. This was my brush with language barrier, although they understood Hindi but obviously they understood Oriya better, the local language. Multiplication was still manageable, what I found tough to teach was decimal division and simplification of decimal fractions. Their confusions were valid, the students were trying hard and responding really well but I was not satisfied with myself. I was not able to teach them that with my existing abilities. I have taught students, mostly in college and yet  I was struggling with basic concepts, things we term as “no-brainer”. That day really hit me hard; at night I called up my friend Manali and shared my feelings. She told me that may be they were never taught while growing up and I naturally asked, how could that be possible. I could not believe that they were never really taught this in their primary school and this thought still haunts me. At one end of spectrum are people like me who aspire to study from the promising institutes of the world and at another end of the spectrum are students who have not been instructed satisfactorily in their primary schools. This is the first time in my life I sensed a real divide and a wide one at that. It seemed like violence to me. For a long time I had been hearing the unwillingness of doctors to serve in the poor and heard-to-reach areas and here I experienced the same for education, primary education. And then it was an attack hurled on myself from self. In that respect, I am still torn and lie in deep ambivalence.

In those moments I also realized how fortunate I have been to receive a good education; it has allowed me to dream higher and aspire for greater things. I wonder what dreams of so many tribal students would be like. Notwithstanding all that I was feeling, I decided to work on my teaching skills and referred some material so that I could teach them properly the intricacies of basic arithmetic operations involving whole numbers and decimals. I had to work extra-hard with two of the students and what followed that was nothing short of a discovery to me. The two girls were able to understand what initially seemed challenging to them; with my naked eyes I saw that concerted effort from teacher’s side and focused practice does pay some fruits. “No student is incompetent”, it was written all over the walls of my brain. I was delighted to see that they did obtain some idea but I do sulk now for my visit was limited and they need more practice and a close interaction with a facilitator. I tried to teach them but I am aware that it was like providing a spoonful of elixir to them from the vast ocean of knowledge.

In the kind of world I live in, I am made to believe that everything is perfect, people are well-read, well-clothed and well-fed and that the problems that we have now are the problems of materialism, substance abuse and other crimes. However, it is a tragedy that there is so much that I do not know. So much which is actually important to know that I do not know of. It is after experiences like these that I can understand books written on social issues and health better. Furthermore, it was precisely due to this experience that I went back to the day when Mahatma Gandhi was thrown out of the train in South Africa and read it all over again and what transpired after.

Long Live Swasthya Swaraj.

My trip to Swasthya Swaraj : New Year Eve Celebrations

On my first day at Swasthya Swaraj, I got up at 5:30 am and went for a morning walk. Whenever I am on travel, my first priority is to find out a place to exercise and as God would have it, I not only found a huge stadium 5 minutes walk from where I was staying but also a “desi-gym” it housed. The dumbbells and weights were of rusted iron and big stones, the machines I had never seen before but elegant and uber-unique in their own ways. Exactly, my kind of place. I was very happy to find this gym and the stadium - LAL BAHADUR SHASTRI STADIUM, BHAWANIPATNA, KALAHANDI.

Later on at 9am I met Sister Aquinas. She gave me one of the warmest, most loving hugs I have ever come across- she snuggled me close to her with a loving force. That was when I realized what it really means to hug someone and have been practicing since. The team of Swasthya Swaraj and I started off for Kaniguma at around 10am and reached there at 12 in the afternoon. The scenic beauty outside was breathtaking, forest everywhere and small streams sidelined with boulders reminded of all the times I have planned treks just to experience them. And here they were lying in their plain innocence, raw and wild beauty but with grace still intact. At Kaniguma I met the staff and students associated with Swasthya Swaraj. Swasthya Swaraj has started a diploma course in community health for tribal girls so these were the 6 students I met in addition to its huge staff of swasthya sathis, field animators, ANMs, lab-technicians etc. Since it was a day of the celebration feast was also getting cooked in the open. I could spot water flowing just 200m from the place and went there with my friend. And what a pleasure that was. I threw my shoes and socks away and went in water: running, cold, clean water. I even drank from that spring and spent some 15 minutes there. This place is still etched in my memory.

Later on games began. We played lots of games : like jumping and trying to reach out for the candies tied above on a rope while both our hands tied backwards, blindfolding games, musical chairs, passing the parcel, tug-of-war and the tribal girls also performed dance. I got to see the tribal dance closely, even though what I saw was limited but that rhythm, symphony and pattern in which the girls danced in a round circle felt nothing short of some mathematical function contracting and expanding with immense grace and perfect periodicity.
A game in which the person is blind-folded and is supposed to hit the vessel with the stick. 
After the games, we had food - I mostly ate rice and little dalma. After the lunch, prize distribution ceremony was held and then again some games including the dance performances. It was a colorful, vibrant and energetic event interspersed with so much happiness in all the surrounding hearts and also allowed me opportunity to carve new friendships.


During the onward journey and often time-to-time Sister Aquinas would tell me about philosophy of tribals and their way of living in a community. I got to know that for Tribal people, "jal-jameen-jungle” (water-land-forest) are the things they worship for they believe that that is what sustains them. Their philosophy is to take that which is needed and not to exploit the nature. I wondered when was the last time I thought about being responsible towards nature to this extent- virtually never. Of course, there are challenges - network connectivity, access to academic resources is severely limited. But the village has a health center now where staff is well-equipped and trained to handle any sort of emergency of health case and save the villagers anxiety and prevent them from lethal consequences. Sister Aquinas who is a doctor herself carries out OPD regularly in the 76 programme villages that Swasthya Swaraj has adopted. People who come to clinics are given money for attending clinics and also provided grains. TB, malaria and severe-acute-malnutrition are major health concerns and level of education makes me feel fortunate and disappointed at the same time. Certainly, we have got so much in our life so easily that we almost live in a closeted world of luxuries and comforts and when we move out to area outside of our cocoons we wonder, “Is this for real? Does this really exist? How is this possible?”. You realize that truth is stranger than fiction and harder to believe.

Suveschcha, Me and Sangeeta (Left to Right)
When I come to places like these I often think about my father and mother. It would have taken such huge struggle and immense hard work for them to get out of village, envision a dream and then work towards that dream despite financial hardships and prolonged periods of despair. Clearly, I do not know what gem they are and clearly I am not mindful of all I have received.


Day 1, as much fun-filled it was, it was also revelatory in many ways, mostly due to the short real life stories Sister Aquinas would narrate from her experience of working in the area. My first day of the trip was eventful, I met many new people, made some friends, played many games, laughed a lot more, got huge time to spend in raw nature and that was the way we all welcomed the new beginnings.


This would not have been possible without support from Swasthya Swaraj Sansthan, hence I thank Sister Aquinas and her team for allowing me to visit SSS.
Watch below 5 minute video capturing the Day 1 at Swasthya Swaraj.

Long Live Swasthya Swaraj.

My trip to Swasthya Swaraj : The Journey

It had been couple of months since my last field trip to MASUM (Mahila Sarvangeen Utkarsh Mandal) in April and I thought I needed another. My mentor at SOCHARA(Society for Community Health, Action, Research and Awareness), Dr. Thelma Narayan suggested Swasthya Swaraj. In 2 days I tried to read everything about the organization and also sent an email to the team expressing my interest for an exposure visit. The mail was warmly replied by Sister Aquinas Edassery. To my delight we met at the 14th World Bioethics Conference in December 2018 after our correspondence and the visit was fixed for the first week of January 2019. What more could I ask for? I was excited, eager and grateful for the opportunity that was to come. In the series of posts I will share my experience at Swasthya Swaraj in Kalahandi, Odisha.

My trip started on 29th December early morning at 5:30am. I took up a flight at 9am in the morning from Bangalore to Visakhapatnam and reached there at 10:45am. My train from Visakhapatnam to Kesinga (the nearest station to my destination) was at 3pm in the mid-afternoon-early-evening. Figuring out how to leave the Vizag airport took some time for the cab drivers were not open to a share ride till the railway station. Twenty minutes after understanding the state of things, I took an auto and proceeded towards the railway station. I had lunch at a hotel near the railway station, Kalindi Restaurant. It was 1pm by the time I finished my lunch and headed towards the railway station which was actually a 5 minutes walk, prolonged to 10 minutes because of my voluntary sauntering. At station I was hooked on to the bookshop and explored multiple books, bought some and read them till my train arrived at right time at the station. I had booked my ticket for the sleeper class, it had been a long time since I not only travelled in train but also in SL. I particularly am fond of travelling in SL because of the vibrant experience it offers and also a sneak peak into the life of people in a sort of mini-India in train. Needless to say I was not disappointed, my eyes and brain did observe some events which led me to feel how aloof I had come from the reality while living in the closed quarters of ACs, 24x7 electricity, clean washrooms and less people. The coach in which I was travelling was over-occupied than its capacity and on my seat (side lower) , 3 people were sitting - 2 of us were women, hence the seat was less crowded. Many fellow travellers were standing, but carefully looking in all directions to just get a small share on the seat to sit and relax. Fights and some arguments did take place over luggage adjustment and clean passage area. In that I saw a glimpse of rich insulting the poor (travelling without full ticket). I wondered whether offering these people a seat would be kindness or implicit encouragement to them for not buying a full-ticket. I wondered if they lacked money. But I am still torn on that question. People were sitting in the exit area of the train coach, covering themselves with thick shawls because of the winter and indulged in casual conversations while munching on roasted peanuts. Food stuff sellers made the coach look like a mini-fair and the pandemonium never seemed to stop and I didn’t mind it. It was something that I wanted to observe. The train was running on time - Dhanbad/Bokaro Express. I had my dinner on train which I had got packed - chapattis, 2 bananas and one apple. I could not sleep during the 6 hours journey, mostly because I didn’t get the space and secondly also because I was not that inclined to sleep. Around 9:40pm I got down at Kesinga after series of to-and-fro movements between the two exit doors not understanding which way the platform would come. I was anxious all the time because I thought that I might not be able to alight at the platform because of the human-traffic at the coach exit doors. The men did help, I had requested them to keep looking outside in the dark to get any inkling of the side where the train would stop. The train stops for a very brief time at Kesinga but I was able to comfortably alight despite the congestion at the exit doors.

Swasthya Swaraj had sent Mr. Surendra to pick me up and the place of accomodation was further 35km away from the railway station. It was cold in the night, very cold in fact, as compared to Bangalore. I reached the place around 11pm and immediately went to sleep. Next day, we were all supposed to celebrate the onset of new year 2019 with the tribal people at Kaniguma village. I could never have imagined what a delight it would be to be with all of the lovely, warm and simple people and welcome the New Year.

Long Live Swasthya Swaraj.

Saturday, November 17, 2018

My bones break but they do not break me

Indian Osteogenesis Imperfecta Foundation (IOIF) visited Dhanya Ravi at her Jeevan Bima Nagar home as part of the foundation’s endeavor to gather stories of people winning over Osteogenesis Imperfecta (OI)  and spread awareness about it in the community.

Dhanya Ravi is a global name, she is a motivational speaker, a flamboyant woman and an innocent child at heart. Dhanya has a purpose in life, a purpose to create traction and awareness about OI and spares no moment to work towards it. Like a hero she has tackled all the hurdles in her life and acquired a calm demeanor tantamount to that of a wise saint. This article is the story of Dhanya Ravi.

Dhanya was born with a femur bone fracture. The swelling took few days to appear. The fracture was diagnosed but OI was not. Her constant and unending cries owing to the pain would not subside and this caused her parents much anxiety. At that time, due to the lack of technologies and inexperience of doctors regarding OI, it was challenging to diagnose it.  It would take another week and multiple consultations with doctors to figure out that Dhanya was born with a rare disease - Osteogenesis Imperfecta. “From then on”, she says, “it was a journey to many doctors for her parents to understand more about the condition and to investigate about future steps”. It was finally at Christian Medical College (CMC), Vellore that they met a doctor who not only explained to them about the condition but also encouraged them to accept the truth and motivated them to do the best as parents for Dhanya. One more thing that differentiated this doctor from the rest was his empathy and sense of connectedness with Dhanya’s parents during their extremely emotionally vulnerable and psychologically troublesome time. It was the guidance and counselling they had received from the doctor that helped them move forward, embrace the situation and prepare selves for the challenges to come. Dhanya emphasizes that every doctor must be trained to handle such situation(s) so that the parents find it less difficult to accept it and gain a perspective on nurturing the child.

Since OI causes multiple and recurrent fractures, Dhanya’s parents had to take her to hospital quite often. During one such incidence, while coming back from the hospital, Dhanya had another fracture. After that Dhanya’s father was advised by doctors to restrict the travel and movement. Eventually, Dhanya’s doting father also learnt how to fix a fracture. Rodding as an option that time in Dhanya’s case was slightly unclear. There was lots of confusion and lack of clarity. She says, “Either the doctors were not clear, or my parents did not know or my health was not allowing the surgery”. In times like these, it is not easy to arrive at a decision regarding surgery or operation. Lack of knowledge and research in this domain can be held accountable. 27 years down the line, however, times have changed states Dhanya. She elaborates:
“Nowadays there is relatively a greater awareness about rodding, doctors are more confident because technology has evolved considerably. Rodding is increasingly practiced in infants now.”
At this point she emphasizes that she is not regretful but concerned about the way in which the diagnosis of OI is handled both by doctors and the parents. She says that research ought to be done by both the parties after diagnosis as to how to address it. Quite emphatically she also asserts that the upbringing of the child ought to be focused on making him/her empowered and independent while maintaining a careful balance between care and excessive care.

Although it must have been difficult for Dhanya to come to terms with her own condition growing up, she declares that embracing OI was not tough. She had surrendered and accepted it not with regrets but immense gratitude. Dhanya could not receive formal education for schools were skeptical about her health and safety during the premises.  However, there was one humble woman, Victoria, who would home-school Dhanya for ten years, absolutely free of cost. For those who have not heard Dhanya, she speaks an impeccable English. (By writing this we do not imply that English speaking ability proves education or an inability hints at the lack of it) Dhanya attributes her fluency and hold over English language entirely to Victoria.
“But more importantly”, she says, “that it was parents’ support and optimism about life that has influenced me the most”.
Victoria taught Dhanya to read, write and learn and one of Dhanya’s friends shared curriculum books with her. This is how learning blossomed for her. As Dhanya grew up, computer and books became her friends. No wonder Dhanya is a wonderful writer, does content writing as a freelancer.  She also maintains a blog and an online space on YourQuote titled, “Matter of Thought”. It was blogging which led her to explore more about the world of internet before venturing into Data Entry work.
She says that even though the money was less but it was not about money, it was about the feeling of being engaged and contributing towards the society in her own unique ways.
For a long time, Dhanya was also associated with Amrithavarshini Charitable Society for Osteogenesis Imperfecta after coming in contact with Latha Nair, the founder of the organization. The story of this connection goes back to Dhanya’s encounter with Binu Devassya, a young kid with OI,  who needed money for his medical surgery. She had read about Binu in the newspaper. The news was advertised by Binu's supporters. Dhanya introduced her group of networking friends with whom she was associated during that time to Latha Nair with the intention to help Binu. This act of self-less care and empathy led Dhanya and Latha to cross each other’s paths. Mysterious that Dhanya is, all this while, it was not known to Latha that Dhanya also had OI. She says,
"Amrithavarshini is like a learning institution for me where I was able to connect with people of a similar health condition, Beyond a positive socialisation it helped me learn from each others’ experiences."
This is just one of the many acts by Dhanya from which we can learn the meaning of true selfless service. With Amrithavarshini, Dhanya began creating awareness about OI through public speaking, news shows and TV interviews. Currently she is active in mobilization and sensitization for OI and rare diseases individually and in collaboration with different non-profit organizations (NGOs). In her words:
“Creating awareness about OI and rare diseases, that is my goal and vision in life”.
She dreams of an inclusive India, “being together” she says. Talking of creating awareness about OI, Dhanya has also been a speaker at TED, interviewed by International newspapers and covered in magazines. Her purpose has brought her to meet Late. Shri A.P.J Abdul Kalam about whom she speaks with genuine respectful admiration. Recently, she also met Sadhguru Jaggi Vasudev at IIM Bangalore and requested him to spread awareness about OI and rare diseases. The video conversation of  Youthandtruth is published on youtube by iWeedastic at https://youtu.be/g2cKqVkKQIY. Dhanya has also mentioned about this meeting on her blog here.


On a serious note Dhanya mentions that since OI is a genetic disorder, it is critical that the couple get tested before planning childbirth and that the mother is also tested mandatorily in the early phases of pregnancy. (We want to inform our readers that genetic examination is affordable.) She also states that over the period of time she has learnt to handle fractures herself and the accompanying pain without being overly dependent on painkillers. Obviously this means that her mental strength has soared high.

We asked Dhanya about her message to the world, particularly for youth, in such tumultuous times where stress and depression is becoming so pervasive. She articulated it very beautifully and said,
“My bones break but they do not break me. Life is all about challenges, struggles, cries but never forget your purpose. My times can be bad, or good or even horrible but I never let the purpose of my life go out of sight. There are a million things one can do, everyone has a unique contribution to make to the society. Life is such a precious gift, never give up on life. Sometimes just hug yourself and say, ‘Its okay’.”
This statement is immensely powerful and a good reminder of the fortitude that all of us possess naturally due to the Grace of Lord. Lastly, Dhanya concluded the interview by saying:
“I do not wish another generation to be born with a condition like this, that is the whole point behind my being. My purpose is to create awareness and traction about OI so that it can be prevented and appropriately handled. My vision is that if a child is born with rare disease, practical steps are taken to ensure that life is smooth for both the child and the parents. In this respect, doctors have a huge role to play. They have to become physicians, counsellors and advisors at the same time to provide courage and support to parents on diagnosis of the disorder.”


The foundation immensely thanks Dhanya Ravi for taking out time to talk to us and share her phenomenal life with us. Dhanya Ravi is a force to reckon with. She is not only a flag-bearer of the movement to create awareness about OI and rare diseases but also a light that guides us all to live a life of selfless service.

The foundation also deeply praises Dhanya Ravi’s parents for forever holding her hand, setting an example for the entire world and making all of us believe that:

“Happiness can be found even in the darkest of times, if one only remembers to turn on the light.”― Harry Potter and the Prisoner of Azkaban"

Acknowledging Dhanya’s relentless efforts to create traction about OI and rare diseases, the Ministry of Social Justice and Empowerment, Government of India has conferred National Award for Empowerment of People with Disability – under the category ‘Role Model  on Dhanya Ravi very recently. The foundation congratulates Dhanya and her family and wishes her all the best for her future endeavors.

(Interviewed by Yesoda Bhargava)

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