Nandini – The unsung Snow White

I didn’t know what blessing lay in store for me when the president of our alumni, Bobby Benny, called me to give an update on the activities of our charity wing that is focused solely to provide social services, relief, aid, and other human welfare services. They were organising a felicitation programme for one of our ailing ex-students and some strong force within me, pushed me to make time for this and participate in this event, come what may.

Lately I never have been able to actively participate in any of these social work programmes as I continuously shush the wee bit humanitarian side of me and slip easily into the day to day demands of modern life.

It would be arrogant of me to say that I have been busy as who is not, in today’s hectic pace of life. So, I truly admire our executive members like Bobby Beny, Dipanju Bora, Bobby Talukdar, Sagorika Sarmah, Madhusmita Chakravarti, Ranu Bose and Nivedita Goswami who plough through their daily obligations and yet manage to defeat the obstacles of time to spare some precious moments for people less fortunate than us.

There is a world that exists beyond our comfortable lives, people who need our time and support, muses Bobby Benny philosophically, as we zoom smoothly through the childhood lanes in Sagorika’s luxurious travel machine.

Seniors like Bobby Benny and many from their batch(I apologise that I can’t mention as many names as I would like to as it would defeat the purpose of this article) have carried charismatic extroverted personalities in school and always managed to shine out in a crowd. I remember in school their batch had students with extraordinary talents who orchestrated spectacular plays, dramas, stage presentations, studied well, accumulated an unimaginable sea of friends from all sections and once in a while also boasted of being teacher’s pets. As a batch they were go-getters and even now they dominate many of the alumni activities. But now I am no longer their junior and feel thrilled to be a part of their circles. They have an awesome sense of humour and their company can keep me feeling good for the rest of the days with amused reminiscences.

Sister Anne, headmistress of Holy Child, is another remarkable lady that I ought to mention here. She is the lead motivator in our missions who glides us into beautiful humanitarian causes like this. She truly is a blessing in our lives. I can’t thank my parents enough that they chose to send me to a Salesian school where besides embedding in us the primary objectives of life to be independent and emotionally strong, it also ingrains in us a spiritual approach to life, subconsciously, that too at a very tender age.

There is always a voice that resonates throughout our lives that reminds us from time to time to look within our inner selves. A strong voice that intermittently reminds us to be less obsessed with the material world outside or keeping up with others but concentrate instead on transforming ourselves from within. The spiritual but practical guidelines laid down by the Salesian Sisters aim towards developing a stable and calm approach to life while exposing our minds to understand things beyond our immediate material needs. It aims to look at ourselves as multidimensional beings of this universe and makes us realise that we are all interconnected as a society in a maze of invisible silver chords. Our every action, every thought and word have consequences that replicate across this complex maze of interconnectivity.

Salesian Sisters by their very example of living a holistic life, radiate holiness and simplicity. That exemplary image is embedded so strongly in our subconscious that we unknowingly flashback to that image from time to time all through our lives. (But of course, back in the school days, we were superiorly indifferent and were sarcastic at times as we took all this with a grain of salt.)

Even now Sister Anne makes us say our prayers before a low-key affair as a snack break – the famous “Our Father in heaven,” prayer that we chanted mindlessly all through our school life in our assembly and at lunchtime. Although this act looks insignificant and small in the grand design of life yet it shows us the importance of gratitude because gratitude begets self realisation. Self-realisation in turn negates restlessness and unlimited craving which in turns begets the state of a peaceful mind and inner calm.

Fast forward to this afternoon on the 8th of March,2015 and our alumni are all excited and looking forward to this event. Somehow when the alumni decides to meet, all the time obstacles that raises its obstinate head which comes with raising a family, maintaining jobs, taking care of children, aging parents etc pale out. Once again we are carried away in the tide of resolutions and awareness to have more get-togethers like this. The camaraderie and chemistry that our small team share is mind-blowing; plus it also provides the feel good factor that comes unbidden when working on various philanthropic causes that Sister Anne often proposes for us.

Benny chalked out the plan for the day which was to visit one of our ex-students Nandini Baruah who was diagnosed with Multiple Sclerosis in 2005, an incurable disabling disease that affects the central nervous system (the brain and the spinal cord). It often leaves one partially or fully paralysed and unable to use many of one’s basic limbs. Multiple Sclerosis or MS symptoms include loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness, loss of coordination and balance and more (A little more details about Multiple Sclerosis have been added right below this article).

On behalf of the alumni we were felicitating her, on the beautiful occasion of International Women’s Day, held on the 8th of March, 2015. Nivedita Phukan, another of our multi-faceted ex-students and an associate professor in Gauhati University, came up with this wonderful suggestion.

Nandini was one of the brightest students of Holy Child who lost her father at a tender age of 13, when she was only in the ninth grade. In spite of the emotional upheaval and various economic difficulties that come with the loss of the primary breadwinner in a family, she worked hard with a single minded determination throughout her school life.

Her efforts were brilliantly rewarded as she passed with flying colours and Holy Child School could boast of producing another state rank holder. She held the nineteenth position amongst all the students in the state of Assam who appeared for their tenth board exams. She then passed her 12th grade too with a brilliant score coupled with distinction marks and got into one of the most prestigious engineering colleges of North East India (Assam Engineering College) to pursue an engineering degree in Electronics and Telecommunication.

A quick biography about her from her equally genius brother, Prahlad, who is pursuing a PHD in Physics from IIT, Guwahati:

“She was the first from her batch to get campus placement. She joined Cognizant Technology Solutions (CTS) in Kolkata in 2006. But ill-health compelled her to leave Kolkata after 5 months of training. She came back to Guwahati in January, 2007 and then joined GIMT, Guwahati, as a lecturer in February, 2007. She was enjoying her work but her health kept deteriorating. In January, 2010 she fell down from the stairs in her college. Since then she has been at home, fighting each day…

At present, she is almost bed-bound. She is not able to walk, write or do anything on her own. She needs assistance for all her daily activities. She is positive most of the time but at times she feels very depressed. We have consulted many doctors. Most doctors don’t follow up the case. Multiple sclerosis (MS) not being a very common disease, most doctors probably are not well equipped to deal with it. Multiple sclerosis has no cure. Research is on, but no positive update till date. Right now we are relying on ‘Bee Sting’ therapy, some vitamins, food supplements and physiotherapy.”

What was remarkable about her, was her cheerful disposition, in spite of the fatal disease that had struck her tragically. Her life was a daily battle to do something as basic as move her limbs and perform day to day routine activities – activities that rest of us easily take for granted. She is completely bed ridden and once in a while she does sit up, though only for a short duration of 5-10 minutes. Her whole body is affected by continuous tremors at various parts. She loves to read but she cannot do it for a longer duration as her illness tires her out.

As soon as we entered her room, she smiled radiantly and looked very excited to meet all of us. She really was very pretty with a beautiful complexion and bright sparkling eyes. I thought what a breath taking head turner – a stunning beauty she would have been if MS hadn’t laid its cruel hands on her – almost similar to the horrifically cruel step mother in the fairy tale of Snow White.

She greeted us warmly and we felt overwhelmed by the love and warmth that resonated across the room and touched each of us like warm sunbeams on a beautiful spring morning.

She spoke a lot about her life while intermittently she would lie down to rest a while. She said she would like to get well soon and that God was testing her but she wouldn’t give up. She wanted to work for the poor and be an exemplary citizen in society.

But we protested and tried to convince her that she already was a hero among us. The manner in which she battled her problems everyday was an eye opener for us, an inspiration, an image that we would carry for the rest of our lives. Our day to day cribbing about our jobs, family problems, domestic helpers, relatives, friends, gas cylinder etc looked very insignificant and trivial in the face of her difficulties. We, who had so much to be thankful for, yet we always complained that we were not blessed enough or materialistically endowed enough and stressed ourselves endlessly over silly mundane things of our daily lives.

We assured her that her smile and the fight against this challenging disease itself was the symbol of great courage and fortitude. We were privileged to meet her – a blessing thrown randomly from the heavens that for once we were sensible enough to catch and use it as an opportunity to light our lives. To meet somebody as indomitable as her was a great privilege and we can’t thank the universe enough for this unexpected blessing.

Her mom works as a teacher, part-time, so that she can rush back home everyday to be her primary caregiver. She needs her job in order to provide for the family needs although I am not sure that would be enough to overcome the financial challenges they would face with an illness like this.

As we spoke to her, her mom was moved to tears and when we wanted to take a picture together she ran to the other room, all the while sobbing. Emotions must have naturally overwhelmed her as I am sure thoughts like her daughter, a past pupil from the same school, should have been where we were today – on the softer side of destiny. But fate had been so cruel, so tragic. Where was the justice for the good people, the angels on this earth, we all felt like questioning that higher power up there…

In spite of all her struggles, her mother, was another candle against the raging winds of life as she lovingly served us with delicious homemade delicacies. We felt shamed as we who don’t face challenges as big as this, yet never shy away from looking for easy ready to eat solutions and food items on occasions as this, just to escape from the drudgery of cooking.

Her brother, Prahlad, was the cheerleader in the family as he would constantly tease her and make her laugh. He would lighten the otherwise strained and depression laden atmosphere. Hats off to him as on a daily basis he would apply his concentration and research through one of the world’s most respectable and brain boggling subjects as physics and yet still take special care of his sister. I am sure this called for more than normal resilience capabilities of an average human. I admire him for this but he shrugs off modestly. His life too has been an endless chain of challenges and sacrifices as he had to give up his academics in one of the most prestigious institutions in the country’s capital to rush back to take care of his ailing sister. The family as a whole was amazing and awe-inspiring that we truly were very fortunate to meet.

And I must mention this small account about her therapy that left us staggered and speechless. I am sure the procedure in which they apply this therapy would blow away your minds too. They use this therapy called Bee sting therapy which is an alternative medicine therapy and have been found to bring in positive and effective results in some MS cases abroad. Here bees are used to sting her skin at certain areas of her body to stimulate the nerves. (Please excuse me in case I have made any mistakes while trying to explain the overall disease, symptoms and cure medically. Whatever I have mentioned is with as much of research I could do in this relatively short period of time.)

We were flabbergasted as all of us are used to panicking and running almost a mile, at the mere sight of a honey bee! As we heard the procedure employed, we couldn’t even conceive the pain she would bear from the bee stings every single day of her life. Her mom would hold a bee close to her to let it sting her skin everyday routinely. And it would be five to six bee stings every day. In the process it would sting her mother and brother too.

Her skin was covered with wound marks and the pain she had to bear in the after-effects of the bee stings was unimaginable – not at all within the normal human endurance levels. She has to apply this procedure every single day. She said the therapy was delayed and they should have started it much earlier. But her family was initially petrified with the whole procedure – who wouldn’t be? In course of time her mother bravely ventured her way through the procedure and now she can handle it much better. They use the bees from a hive they have sheltered within their house premises. Prahlad tells us that abroad there are huge labs and clinics to facilitate the Bee Sting therapy but they couldn’t afford that as it was exorbitantly expensive. We were moved beyond words to see her wound laden legs.

Sagorika called me at night to discuss the updates and exchange the pictures of the day’s events to be posted on our alumni profile. She exhaled deeply saying, Pratibha, I am still numb with all the emotions that choked me during our rendezvous with Nandini. It was almost impossible to come to terms with the tragedy of this young beautiful life.

At the time we were just leaving, her mother asks Bobby Benny with a lot of hope in her eyes, “Do you think she will recover, Bobby?” Benny always exudes this empathic vibe around her making people look up to her for consolation and peace of mind.

Bobby Benny hides her own tremor successfully and cheerfully offers herwarm comfort saying we must hope for the best against all odds. To that Nandiniquietly reminds her Mom in a practical yet comforting voice, “Mama, you knowthat they (the medical community) have yet to find a cure, don’t you?”

***A quick note on Multiple Sclerosis or MS – It is an inflammatory disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage of the central nervous system disrupts the flow of information within the brain, and between the brain and body. This may result in a wide range of signs and symptoms, including physical, mental and sometimes psychiatric problems. MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms). Between attacks, symptoms may disappear completely; however, permanent neurological problems often occur, especially as the disease advances. Some people with severe MS may lose the ability to walk independently or at all, while others experience long periods of remission during which they develop no new symptoms.

There is no known cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms. Treatments attempt to improve function after an attack and prevent new attacks. Medications used to treat MS while modestly effective can have adverse effects and be poorly tolerated. Many people pursue alternative treatments, despite a lack of evidence. The long-term outcome is difficult to predict, with good outcomes more often seen in women, those who develop the disease early in life, those with a relapsing course, and those who initially experienced few attacks.