Musings of a Pioneer: The Sky is Pink

I don’t watch too many movies in the theatre but prefer to see them in the comfort of my drawing room. I am a highly emotional person and get teary-eyed at the most mundane of situations projected on the screen. I also come from a generation where it was taught that boys don’t cry, and so I have a deeply ingrained, but highly misplaced sense of where I can cry and where I cannot give vent to my emotions.

It is for this reason that when my family asked me if I wanted to go with them to watch the recently released movie ‘The Sky is Pink’, I was apprehensive as the reviews that I had read clearly showed that the movie would be a strain on my tear glands which might go in an overdrive. I was even more apprehensive when I was told by my children that it was an almost three hours long movie. As it is, it was a Sunday afternoon, which is the only day that I have my after-lunch nap, apart from Saturday afternoon, or days declared as public holidays by the government.

Overcoming my instincts, I still went with them last Sunday, ordered my burger, and then settled down in the plush seat of the multiplex. The movie started and we heard the voice-over of a girl presenting her family comprising of her mother, who she called Moose – otherwise named Aditi; her father, who she called Panda – otherwise named Niren; and her older brother Ishan, who she called giraffe. It was a fun start to the movie, and this girl, who was narrating her story, we came to know a little later was named Aisha. As the commentary progressed, we were told that Niren lived in Chandni Chowk almost 25 years back and was in love with Aditi. They married and then had Ishan and a baby girl Tanya. At birth, Tanya was diagnosed with SCID – Severe Combined Immunodeficiency – which we were later told by Aisha is a rare disorder where body does not produce infection-fighting immune cells. Tanya did not survive.

Then a few years later, the young couple had Aisha and this little child was also diagnosed with SCID at birth. The family was shattered, but by now medical science had made progress and they were advised to take the child to London for treatment. The treatment involved injecting healthy cells from the body of donor – probably some kind of stem cell therapy, and it fell on Ishan to have his blood tested. Ishan’s blood didn’t match, which required the family to take a decision – to let the child die or to go for chemotherapy – they chose the latter. The child underwent chemotherapy and was treated, except that she needed to go to the hospital for review every year or so, and to avoid congested places so as not to catch infection. This was when we got to see a grown-up Aisha on screen going to the hospital in London with her mother. As Aisha was now declared medically fit, the family decided to relocate to India.

It was now intermission, and I realised that I had been so absorbed in the life of Aisha that I had not even noticed that it had been one-and-a-half hours since we had sat down and I had not fidgeted even once during this long time. Each person in the theatre had been silent all through the narrative. I was really happy that I had not given in to my instincts and had come to the theatre to watch the movie.

Aisha was a fun-loving adolescent, like all children of that age. It was at this time that tragedy struck the family once again when Aisha collapsed and then was diagnosed with pulmonary fibrosis. I am not a person with medical background so I will not be able to elaborate on what it means, except what I could gather from the movie, that this condition was due to the chemotherapy which Aisha had undergone as a baby and because of which her body could not utilise oxygen to the level that you or I do. This was irreversible, and Aisha only had a few years to live. I had tears in my eyes, and I am sure so many others in the hall were also teary eyed for the imminent death.

All of us have seen deaths in our lives – older members of the family, relations of friends or colleagues, and so many others. Death is the ultimate reality and yet when it comes, none of us are prepared for it. We always feel shocked when someone known to us passes away – more so if the death is untimely. I still remember so many years back when the young son of my boss had gone on a visit to the Sundarbans and had fallen overboard from the boat on which he was travelling. He was an only child; my boss must have been about 56 years old at the time, to my 27 years. I can still vividly remember that I had hugged my boss and did not know what to say, so the only thing that I continued to do was to hold him with tears in my eyes. He had been much more composed than me.

In subsequent years I encountered more deaths of those who were close to me as also those who were not so close to me or were only acquaintances. I worked for the Indian railways and looked after operations also in my different assignments. There was one accident at site where the driver was trapped in the engine and when I reached the site of accident, the driver had such a look of hope in his eyes as he clutched my hands and implored me to save his life. We extricated him from the engine cab, sent him to the hospital in an ambulance and got down to the task of restoring traffic on the railway tracks. He died on the way to the hospital but left me thinking that if I had also gone with him holding his hand, probably he might have derived some strength to hold on to life.

I also remember the time when my wife lost both her parents – her father to a mindless gunshot because he was investigating an irregularity in the government department that he was working, and her mother to cancer a year later. They were maybe around 54 and 51 years old respectively at the time of their deaths. They were not expecting, nor were we, that death would claim them at such a young age. But these deaths were sudden when we were not expecting them.

It was only very recently when I lost two very close and dear members of my family and a very dear friend to untimely deaths, that I was again reminded again of the eventuality of death. The former two were in the prime of their lives – one was barely 51 years old at the time of death, suffering from a very rare cancer, and in bed towards the end of her life; and the other, 59 years old, going through two liver transplants, and practically in hospital for the last one year of his life. What I can still remember vividly about the lady was that when I asked her to shift the television to her bedroom so that she could view her programmes, she replied that she preferred to walk those few steps to the living room, otherwise she would think that she had lost her hope for life.

And I can still remember the tenor of optimism and hope in the voice of my other relative when he called me on the way from Chennai to Bangalore, going for his second transplant. He had told me with expectation of life to come, that they had received an organ for the transplantation in Bangalore.

These were deaths that we did not want, and hoped and prayed with all our devotion, not to happen. We saw our near and dear slowly dying in front of our own eyes and felt helpless so many times.

But what words of hope do you offer to the parents of a young child of around 18, and even to her, when she and those close to her know that she has a limited life span, that she is looking at a life not more than maybe six months? Aisha initially went into the same reaction that any of us would – why me? But then she was not one to brood. And her parents did not want her to brood. They took her out on travels and encouraged her to do fun activities and even adventure sports. Aisha became a motivational speaker – for others to gather courage from her life. Aisha started painting and wrote a book. Her father arranged for her book to be published.

I cannot even begin to imagine what Aisha herself and her family were going through. But it was courage, which is the true human spirit, which so many of us are unable to display and sustain. I do not know if I have the courage that this family of four and their extended family displayed.

I was shamelessly crying as the credits started rolling towards the end, like I am crying now writing about Aisha and her family.  And then I had another shock – this was a true-life story – these were people who still lived amongst us, except Aisha. A situation like this can strike anyone of us. But in the end, it is only we who can choose how we want to deal with it – like Aisha did, brave and smiling till the end; or giving up, which many of us may choose to do.

It is my wish, and I hope I live to see the day that my wish will come true – there are more advances in medical research to make treatment of rare diseases more affordable for everyone; and a wish for more of us to come forward to donate blood when living, and our organs after our deaths – so that more persons living on a borrowed time are able to extend their lives till my former wish of affordable medical facilities is fulfilled.

And till that time, I will repeat what Aditi told giraffe, her son, who had coloured his sky pink in his school drawing book, and when he asked his mother if the sky is not pink, and why he was punished and laughed at in the school for painting the sky pink – of course the sky is pink; it is your sky and it can be any colour that you want it to be, let no one take away your sky from you.

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