Saturday, March 25, 2017

An Experience to savor

“Thalassaemia”, “Haemophilia”, “Muscular Dystrophy” these were just the very few terms in my dictionary of rare diseases before I attended the Blue Ribbon Symposium on Rare Diseases and Film Festival, a confluence of scores of intellectuals, responsible researchers and a plethora of advocates of the rights of people with rare disease condition in India held at the National Gallery of Modern Art in Bangalore from 17th to 19th March 2017. It would not be an exaggeration to asseverate that the symposium was a watershed in the life of an aspiring public health researcher.

In the two days that I attended the symposium, I was apprised of my own lack of knowledge and surprised at the discovery of rare diseases which afflict one in every thousand (as defined by WHO http://www.rarediseasesindia.org/ ). I remember I was reluctant to attend it on the morning of  18th March citing that I had tasks to accomplish but by the end of the symposium I was fully convinced that there could not have been a better investment to my weekend than this symposium. 

 “Osteogenesis Imperfecta”, that was a new word I learnt, I also talked to Archana who shared her experience of living with such a condition. As humans when we get injured sometimes, feeling fortunate is the last thing on our mind but here was a lady who declared with such pride in her voice that she was the fortunate one to have OI for it has made her very strong mentally. When I heard that I was awestruck. Sure, there are so many experiences Archana cannot cherish, she has to walk cautiously lest her bones break, she has little strength physically yet she came across as a giant figure in the symposium. The sense of gratitude that she vibrated despite her debility did not touch me, it filled me with an elixir of real beauty and made me aware of my own functional body. We as humans take our physical bodies so much for granted and continuously contaminate it and poison it with useless things that we fail to realize how much of a blessing it is to have a fit body. I met Soma Shekhar who was a Thal (a person having Thalassaemia). He had founded the Haemophilia Society of India and it has been 25 years since its inception. In an half-hour long conversation that I had with him, I learnt more about Haemophilia.  I was aware about haemophilia for I had read that in my school but talking to Somu was an experience on a level way beyond that purveyed by books. Blood, the most basic survival necessity for all of us if does not clot within a certain period of time can prove to be lethal. What had I done not to have this disease? What had Somu done to have his gene gone slightly berserk and give him Haemophilia? No one knows. Here was I talking to people, trying to learn everything I could about the rare diseases yet parallely a mutiny was slowly raising its head inside my heart. A consciousness was emerging, an awareness unprecedented. These were my redoubtable brothers and sisters, living life no less extraordinary despite knowing the fact that their bodies were slowly atrophying, physically hamstrung yet displaying infectious joie de vivre, a classic example of utopian dreams amidst dystopian realities. 


According to [1] there are currently 72,611,605 people in India living with rare diseases and disorders. Most of them are in rural areas shrouded and ostracised from participation in society under the veil of superstitious practices and prevailing baloney of bad omen attached to their presence. Life is tough for them. An image of a lady whom I saw in documentary , “Walking Mind” that was screened in the film festival is still very vivid in my mind. She was close to fifty years old, having severe OI, unable to move or sit she was sharing her life experiences. She taught me to value every instant of my life when I can be independent and footloose. There were many others who were denied a good education due to their functional limitations, there were few who were fortunate enough to get admitted into schools. It led me to some serious introspection. How many of us really value our education? How many of us realize what it really means to have received a great education? Do we realize what potent weapon education is? Surely, reducing education to just a means to earn a hefty salary would be the definition of a daft. When you see people struggling to get into school, you learn what education is, you learn such fortune it is to be able to complete education without hurdles and if you are conscious you value the opportunities that come with it and become aware of your duties that are coterminous with it. The activities that held in the symposium taught me all of this. 


I also got to learn about gene therapy and its potential and tested effects for the better health management of a person with rare diseases. I was happy to know that Indian research community is working in collaboration with its foreign colleagues and trying to mitigate the challenges imposed by the rare diseases. Dr. Alok Srivastav, Prof of Medicine, Dept of Haemotology and Head, Centre for Stem Cell Research, CMC, Vellore in his comprehensive presentation apprised the audience in non-medical jargon about gene therapy, opportunities and challenges in bleeding disorders. Listening to him was a very informative experience. A doyen of research in such field his understanding was very conspicuous.

An interesting discussion ensued on the importance of maintaining registries for informing better health decisions and that was of particular interest to me. I believe that information technology and data science has immensely significant role to play in the future of health and health care, more so in the quest of meeting the Sustainable Development Goals by 2030. A lot of discussion happened about the need to have a central registry for all health outcomes in the country, which as we know is easier said than done. To this Dr. Srivastav had an interesting answer, he mentioned that maintaining state-wide registry would serve as an initiative which other states could emulate and anticipated that that way a more exhaustive and inclusive registry could be maintained. It was also brought to fore that there must be inter-operability among the registries, which I believe is a very important point. From the public health informatics point of view, the information architecture should be such that sharing data between platforms is not a task which entails re-creation of architecture. Time and again we have debates on the nature of data collection in India and the need for disaggregated data collection for better health decisions and policy making. I always wonder that as learned engineers we often talk about big data analysis and biostatistics but the very premise of application of these techniques, the availability of data and its collection is in shambles in our sub-continent. Notwithstanding the fragmented scenario of health data in India, the endeavors to maintain registries is laudable but far from enough. 
 I believe the concept of film screening gave a beautiful shape to the symposium. Watching the real life stories and learning from them was a precious experience. Films like, “Olivia’s Story”, “Rett syndrome”, “Walking Mind” to name a few made an incisive attack on the darkness of my ignorance and replaced it with a light of knowledge. These films need to be widely shared among the public to create more traction for the rare diseases in world and in India.

The event of painting and clay modelling on Sunday, the last day of the Symposium,  with kids was also a very different kind of experience. As we age we often allow the little, simple and innocent pleasures of life to fall into oblivion, however such kind of activities often refresh us and take us back to our unbridled enthusiasm of childhood years. Being with kids who exemplified artistic acuity in everything they did is too concrete a memory to be so easily forgotten in the sands of time. As Uma Chandru was pointing out consistently, it was a therapy, an “Art Therapy” and I was living it, it was soothing me and cleansing my soul second by second. All of us had participated, kids, adults and elderly alike with supreme pizzazz and vitality which was the best part. I believe there is a child in all of us and we must unleash it time to time, it keeps us young.

Looking back I wonder, if I had spent my weekend finishing some tasks other than attending this symposium I would have lost a deluge of lifelong experience and my ken would have not broadened. Looking back I have also understood that education is a potent social weapon, a panacea to vandalise the existing miseries and anthropomorphic inequalities in our societies. There was one very striking memory that I still carry with myself - no school admitted her but a teacher taught her every day for 8 years for one hour and today this girl is self-sufficient. Her name? Dhanya Ravi. Her confidence, trust in self and exuberance while astonished me on one hand inspired me on the other and filled me with more energy for my own life endeavors.

These words that I have written nothing remotely convey what I felt during my two days at the symposium but the symposium triggered an avalanche of lessons which will be with me for this lifetime. The long term effect of this short term experience is incalculable. I believe such symposiums are indispensable in a civilized society for it ushers a hope and reminds us of that sense of responsibility that all of us have owing to our education.

This article is incomplete without acknowledging that one person who led me to it, my mentor Dr. Thelma Narayan. I would also like to thank Dr. Uma Chandru, Dr. Vijay Chandru and Dr. Namitha A. Kumar who allowed me to participate actively in the symposium. Last but not the least, the venue for the symposium was perfect , the National Gallery of Modern Art, gratitude to their staff in full measure.

References:
[1] http://www.rarediseasesindia.org/

Sunday, March 12, 2017

Lost in the woods was a bird


Lost in the woods, is a bird,
How she looks, I know not,
Brown or black, or green or yellow,
What color she is I have no clue.

Engrossed was in my studies,
When her sweet voice pleasantly,
Took me to my verandah,
Not wanting to see the bird,
But to feel a sweet voice, with eyes closed.

Had been a long time,
That a voice bewitched me,
Made me smile, gave me peace,  
The voice of a bird,
Lost in the woods,
Chirping carefree, dancing to her heart’s desires.

Sometimes when she stopped,
I wished she would sing again,
When she did,
The smile on my face came again,
A beautiful sporadic melody, she sung,
Had been a long time, I enjoyed this
Sweet voice of a bird, a bird,
Lost in the woods.

There was noise all around, yet, her
Signature voice stood apart,
Hit my heart,
Filled me with inexplicable beauty,
Just by her chirping craft.

I did not see the bird,
Nor did I want to,
The melody that she sung to herself,
Was enough ,
To light my eyes, fill my soul,
With warmth and divine peace. 


The chirping stopped, the bird flew somewhere else,
Where she will again chirp and sing the melodious song,
Where someone like me again will feel blessed,
And stop for a while to rejoice in the gift of Lord.

Lost in the woods was a bird,
Blue or black, green or yellow,
Did not I have a clue,
I heard her voice,
There was nothing to wish or to rue.

Again came a voice,
Again I looked blank in the ether,
The sweetest melody that I had ever heard,
Making me dance inside.

Love is like that voice of bird,
A love, amorphous yet potent,
Can fill any soul,
With peace humongous,
With gratitude enormous,
And with an eternal happiness.

The voice, the chirp continued,
My smile never stopped,
Knew I fully well,
Even if the voice stopped,
My smile won’t,
It taught me power of Love,
A Love invisible, yet so strong.

Lost in the woods was a bird,
Which color I had no clue,
I rejoiced, I peacefully smiled,
I heard her sweet voice,
And the voice taught me,
Lessons of a lifetime. 

The voice was soon gone, 
as was it destined to, 
and i continued to feel peaceful, 
as someone whom True Love has touched, 
is destined to.   

I wont hear the music, who knows, 
but rejoice I will, 
Eternity of love, what that is, 
I had learnt.

Thursday, March 9, 2017

Do not allow the world to dictate what love will mean in your life

Human attraction, attraction towards a person, towards who they are, towards how we feel when we are with them. A feeling of instant connection, a feeling which is different and inexplicable, a feeling whose bits and pieces are enough to send a pleasant shiver throughout our body, a mere glimpse of that person brings a wide smile on our face, a sense of deep peace and tranquility associated with that person, a person whom we like, adore and sometimes, love. Human attraction is really not a complex rocket science, but as a society we have brutally categorized it bringing much insult and disrespect to the unique individuality of each person, bringing unwarranted discussions of character of a person based on his/her most personal of choices, created a deep seated fear among millions of others who feel gagged because they will be maltreated let alone respected. Where are we headed? How can it be wrong to feel towards a person? How can it be against any legal norm to harbor a sense of intense compassion towards a fellow soul? Isn’t that we need all the more today? Is terrorism or naxalism too less of a challenge that we have created this anthropogenic disaster in our society?  

It surprises me when people educated and literate express disdain for anything that is not heteronormative. It does not make me indignant however, because those who are against the expression of a “specific” love are ignorant and poor creatures who have yet not become aware of their own hearts and feelings. They have not yet understood the real spectrum associated with human race, somewhere fallen short of or even not tried to understand the entire basis of diversity in every specie and creation of Lord. As a society we still very much base love with opposite sexual encounter and look at marriage as the association of two different reproductive organs rather than a divine communion of two souls. Such wide chasms exist between hearts of people, even those who claim to be truly, madly in “love”. I cannot help but wonder about the type of “love” that then these people advocate. Where the appropriate response should have been an acceptance of the non-understanding of the concept, vehement protests against the most soft of human emotions and outright opposition towards the most pure of human emotions evokes in me a lot of confusion, despondence and a silent prayer towards those who do not know and understand. Never has it brought anger in me because I believe people act according to their level of consciousness.

The biggest desultory remark that we can ever give to one of the most precious feelings in world, love, is indifference, a sense of negation and non-acceptance. Love, it just happens. There is no “terms of agreement”, “rules or regulations”, “qualification criteria”, “right or wrong”, “allowed or prohibited”, love is not an algorithm that runs its set course. Love is a privilege, a feeling that makes us humans in the true sense of the word, a transformation, a gift. To restrict the privilege of love between men and women is not only a gross blasphemy against humans but it is a very incisive attack on the entire concept of uniqueness among human behaviors. I do not believe those who claim to be in love yet cannot understand when a man is in love with a man or a woman is in love with a woman. Why? Because it means they have associated love with reproductive organs and opposite sex, whereas the entire premise of love is based on no base. There are no and should not be any rules to love. Why? Because love is the only feeling that teaches us to transcend differences and embrace the person as he/she is, because love is a feeling which is beyond five senses, because love is really a communion of two souls. Love is not mathematics or finance that we apply logics, rationales or try to find realistic opportunities to express it! It is beyond any science, a phenomenon amorphous yet perfectly in shape.

To those who do not understand that “love” (love is love, I do not use homosexual love, bisexual love, transgender love or heterosexual love), I just wish to ask them, “Sir/Ma’am, what is it that you really liked in that person whom you love today and with whom you are together?” Certainly, it would have been the way they look, their manners and eventually their heart, right? As a woman can I not like a woman who looks beautiful, has good manners and has grace written all over her heart? As a man can I not like a man who is handsome, is chivalrous and has gentleness written all over his heart? What brought “normal” people close to their partners, are the same things that bring men closer to men and women closer to women. Where lies the discrepancy? Where lies any abnormality? What explains any sense of deviation from nature? Someone please explain it to me. As a society we have to grow together, help each other express their most core selves rather than sabotage each other’s unique personalities. As members of the society we owe it to each other, a sense of respect, acceptance and a lot of compassion and understanding.

There are already so many conflicts that exist on Earth which are eating away our vital powers, a jihad in the name of love is totally uncalled for. I have a message for those who are coerced to feel afraid, closeted and remain in continuous dread of “being caught”.

“You are absolutely human, displaying all perfectly natural feelings of a human and that is how it is supposed to be. Do not get worked up due to love fanatics. Do not spoil the love in your lives due to non-understanding behavior of people. I know it is hard, I know it is challenging and I also know how gratifying it is, to be able to live confidently and with pride about what one is. And you are not alone and those who make you feel guilty do not deserve to be a part of your life and should get their own definitions of love right. You are a child of Lord, created in His image, you can never be against any divine order. Carry your love with utmost pride and dignity, because if you do not, then who else will? As such there are rebels all around. Love is the most divine feeling in this world, experience it, live it and cherish it because love is not a body, love is that surreal feeling in heart which even the word “love” fails to explain. There is nothing wrong that you did or are doing, it is absolutely perfect. Feel grateful that love chose you and transformed you. Those who have been struck by cupid are the fortunate ones, do not allow the world to dictate what love will mean in your life. Do not let the world guide you about whom you love or wish to love. Fight for what you feel, fight to be able to express your truest and most clean of self. Fight for yourself because no one else will. Love and guilt cannot exist together. And you are really the ones who understand true love beyond body. Be that love. Love and never stop. I love you and respect you. What value you bring to the society is more important to me than your personal choices. Your love is worthy of respect as anyone else’s and I respect it”.

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