It is a reality that should make us hang our heads in shame. In a country where millions go hungry every day, where 5000 kids under the age of 5 die every day of malnutrition related diseases, we allow food grain to rot every year. The latest report comes at a time when the Government has rushed its Food Security Bill through an ordinance. In Bhogola, the wheat sacks are kept in the open and are completely getting drenched in the rain. The ones that are covered with polythene sheets are also not protected as these sheets are torn at places. Rotting grain is an old issue. Multiple articles and stories have appeared in the media over the years. In spite of Supreme Court orders and a plethora of social programmes that are rammed down our throats time and again, nothing has changed. India remains a poor country with pathetic roads, no electricity, insufficient and poorly run schools and abysmal health care. An interesting article explains in its own manner the reason for this immobility. Now we have all been ‘gifted’ the Food Security Bill, a supposed panacea for all the nutrition problems of the country. Yippee!!! I wonder how a given quantity of grains to 800 million people will solve malnutrition and address the problem of undernutrition.

Breaking News. I interrupt the flow of this post to share some terribly distressing news: 20 children under the age of 10 have died after consuming the midday meal served in their school. It seems the rice had some lethal pesticide in it. It seemed it may not have been properly washed. Whatever the reason, nothing can forgive this criminal Act.

The midday meal is also an important part of the said Bill. If they cannot get their act together now, what miracle will occur to change things. Maybe one should have set one’s house in order before conjuring new plans. Malnourished children die of diseases that are preventable. Maybe we should look at this more closely rather than dole out more suspicious hand outs. It is all in the name of garnering vote banks: the ruling party brings an ordinance, the opposition will not dare oppose it in spite of its flaws as every one needs to woo the poor. There are sufficient schemes in place the intelligent and honest approach would have been to simply ensure every one of these work adequately. But that is not the way things work in our country. You need new programmes to add new avenues for corrupt people.

The new ordinance has flaws. The obvious one is that a certain amount of grain given to a person does not solve malnutrition which is the main bane of the country. This needs preventive medical care, sanitation and safe drinking water. To curb undernutrition the 9 months and 1000 first days of a child are crucial. Early malnutrition cannot be reversed.

This bill is no magic pill. It is just one more political gimmick aimed at retaining power. When will we see politicians truly willing to put their house in order?

This is in continuation of my earlier post Health a la Carte.  I had ended the post with the following words: So as per plan we shipped the husband to the hospital late in the night! Imagine my surprise when I was told that he had been given a single room! Was it an answer to my entreaties or to my prayers. I do not know. But I feel a little better knowing I beat the system. How naive I was! or should I say stupid, credulous and dupable! I really thought that prayers and entreaties could work in our world. That night I went to sleep believing that better sense had prevailed and we had gotten a room where we would just have to pay the difference between what our insurance gave and the going rate! When we had shipped the husband late at night in pouring rain,  so that we all could spend some time with him, we were reconciled to him having to share a room. So when we got the news that he had been given a single room I really believed that my stratagem had worked.

I woke up before dawn and reached the hospital. I was happy to see my husband fast a sleep in his ‘single’ room. I sat with him and we talked about things that we often are not able to at home. Some reminiscences, some plans for a morrow we still are unsure of. A sort of bucket list of twilight years. Anyway I was happy to see him in his room, though the needles and lines made me uncomfortable. Some time later my daughter came in and as we were not sure of the time he would be taken into surgery, I decided to take a short break and be back after a few hours. I had barely reached home when my daughter called to say 2 units of blood were needed and thus 2 donors. She would be one of them. I rushed back with my son in law. By that time the husband was in surgery and it was waiting time. My daughter and I decided to wait in the famous single room as we were promised that we would be contacted on the phone by the OT when it was all over.

The phone rang and we both jumped hoping to hear that the surgery was over. But the call was from the administration and asked me to come down to sign some paper. I went to the office and was given a blank sheet and asked to write that I was willing to pay the difference in the room charges. A while later another call informed me that actually I had to sign a proforma! Wonder why I was not given the ‘proforma’ before. I duly went down and was given a typed letter that stated that I would pay all the additional charges that went with a single room: surgery, anesthesia and so on. The letter was dated the previous day. I signed the letter but wrote that this was given to me at a particular time one day after the date of the letter.

I knew I had been had! The time when I was given the letter was when my husband was in surgery and there was no way I could take him away. The proforma had not been produced when admission took place on the previous night. Had they done so, we would have gone for the double room option. We were asked to deposit some money and it took a lot of patience and tact to get a figure out of these people. 50k were deposited and we were told that we would be given back any money not used. But there was a rider! if the money was under 20k we would get a cash reimbursement, and if was over 20k a cheque. Would you believe me if I told you that the reimbursable amount was 20 040! I am still waiting for the cheque.

When I thought this drama was over we were in for another surprise. Another call informed me that the three days sanctioned by my husband’s PSU had expired. Now the husband got there at 10pm on the 9th, so in my simple mind he was covered till the 12th morning. Not at all. The first day were the 2 hours from 10pm to midnight counted as one day. Though I got one day extension, we brought him home on the 11th.

I do not know what awaits us now. I know that we visit the hospital with the results, we will again have to go through a seduction game aimed at comforting and scaring us at the same time. But I am prepared for the onslaught of their well rehearsed spiel and have my answers ready. I have read and reread all I possibly could – God bless the world wide web – and will not be caught off cards. Come to think of it, I may not even take the husband!

The beast gnawing mercilessly my loved one for the past year now has finally been exposed. It has a fancy name meant to scare you and hold you in fear: Hodgkins t cell histiocyte rich large b cell lymphoma. This is the third time it has dared attack my loves ones and won the last two battles. This battle is mine to win. The last two times it kept us in such dread that we were terrorised to called it by its name. The C word was banned in my home, the same home I sit in today in the early morning and write these words. But this time I named it before anyone could give me medical spiel. TO me he is ZOZO. This t cell and b cell saga will not instill the alarm and panic it did last time. If you google it you find a load of scientific mumbo jumbo that means nothing to the layperson and is again meant to terrorise you. Actually the whole C Saga (cancer) seems to have been created to enrich the medical fraternity by giving it a larger than life image. When you patiently crawl and sift through all the information you get, you find that it has a fairly good chance of cure. Sorry I hate the word remission. I will hold on to cure.

However I want the control of the cure to be in my hands and blissfully my family doc will hold my hand and avoid I fall into the traps commercial medicine will lay for me along the way. In addition to what I feel is adequate and humane, I will draw strength from the age old medical traditions that have been so brutally and contemptuously been cast aside by those who think they know all. I will also starve the beast with all the foods it hates. I will go to the end of the world and farther to ferret out all every single option that will help my love one heal.

As I said earlier this is a battle I either win or die fighting.

This is the brave side. The one I have carefully and painstakingly crafted in the past weeks, since the word C entered our personal lexicon again. It is my battle gear: the words and expression to battle greedy men in white; the face to maintain while being buffeted by commiseration that will annoy, advise and questions you have to answer and above all the one to be perfected so that my loved one feels that everything is possible and that cure is just around the corner. Can’t he see it in my face.

This brings back a memory long forgotten. I must have been four and we had a terrible car accident in which my mother had broken many bones: ribs, sternum etc. I was barely hurt as she had protected me – no seat belts then – and looking at her started wailing thinking she would die. She just kept smiling, hiding her pain, and talking to me in reassuring words till help came, last as she had not let out a scream. I am not Kamala. But today Mama I need you to give me that strength and composure. I know you will.

However behind this brave face that is I hope well in place, I am breaking into million pieces. I am angry, scared, hurt, helpless and alone. The tears that are welling inside me threaten to come out and it takes me all my strength to stop them coming. Do tears dry inside you. I hope they do.

The C word can shred you of your dignity, take away your wealth and your life’s effort. I will not let it do so. I will heed good advice and shun the rest. I will draw strength from my nuclear family, my little grandson and the one that came into my life a decade ago and all my pwhy family, that is all of you.

Maybe pwhy came into my life so that I would not be alone in my time of trouble.

A news item this morning brought back memories I had vowed to forget. The item entitled: Rice with insects, clothes with holes took me back to so many instances of shameless beings who feel that anything is good enough for charity. We have had our share of such people and their interpretation of the word ‘charity’. According to many ‘rich’ ladies everything is good enough for charity: broken toys, incomplete games, copy books filled up to the last page, torn and useless clothes. We were even ‘gifted’ an undergarment with a sanitary pas still attached to it!

The article I mentioned above is about the relief being sent to the flood victims of Uttarkhand. Why do people think that poor people or disaster afflicted people have no dignity or self respect. Why do people not put themselves in the place of those they are sending their supposed charity and think how they would feel. Is rice with insects something they would eat?

Donations we receive time and again do not seem to be something that has been done from the heart, clothes carefully chosen, washed and ironed before they are packed. It seems more like someone is emptying cupboards and store rooms and instead of selling it to the kabari wallahs, makes a phone call to a chosen NGO and asks them to come and pick the ‘donation’ up. We have been caught in this too many times. Now if the phone rings and one recognises the number of one of the ‘generous’ ladies, one does not pick the phone up. I am sure the said lady has a list of NGOs and just moves on to the next.

Over the years we have had many such experiences. One of the most upsetting one was when the PR person of a known actor badgered us to cart a child who needed heart surgery to some place to be interviewed! The flip side is a letter I received from a young child asking me whether it was wrong  to help those in need. Thank God for people like her otherwise one would simply give up on life itself rather than be part of this ugly world.

I have been often asked why we sponsor open heart surgeries for the poor who can according to them have more kids! I have given up getting outraged. It is too exhausting. How do you explain to someone that a mother whether poor or uber rich loves her child in the same manner, that parents whether poor or rich will do everything they can, and in the case of the poor sell everything they possess to give their child the best treatment possible. How do you explain to someone that the loss of a child is a painful and traumatic for any mother rich or poor. You just don’t. You simply grit your teeth and walk away. I remember the night when the story of the first open heart surgery had been aired with my number and the strange and disturbing calls I received throughout the night. One caller asked me if I could guarantee that the operation would be successful and the child would live. I felt like telling him that I could not guarantee whether he would see the next day, but rephrased my thought my telling him I could not ‘guarantee’ whether I would be alive. I would like to tell that caller that the boy is alive and kicking and is in class XII. And before I end this tale, I need to tell you that the fact that the story came on air is also worth counting. Actually a journalist friend had written a piece about this boy in a leading newspaper. It was to be front page on the Sunday edition. A late night call informed me that the story had been killed and replaced by the story of a rich lady who had paid 50K to the person who had found her lost dog. This made me so mad that I did what I never do: asked for a favour!

There are many instances that reveal this ugly aspect of our society. One of the most hurtful one was when a lady flew into a rant when I tried to explain to her how our boarding school programme ran. She could not understand how one could spend so much money on just a poor slum kid! It took all my savoir faire not to slap her.

India would be transformed if we accepted the concept of the neighbourhood school. But that would mean accepting that our child share a bench with our driver’s daughter.

Long way to go….

I went on a net search to find the origin of this expression. This metaphor was coined by Stephen Covey and seems to be a way of strengthening family ties. It is definitely worth a read as it could help restoring trust within members of a family. I will however take some liberty and use the same expression in a slightly divergent manner. We all face difficult times and have our own ways of facing them. When faced with a situation when a dear and loved one is facing emotional upheavals and processing facts that are painful and often felt as unmerited, they rely on their partner to draw the strength they do not have and take the decisions that they fear. This is where I stand today. In all the challenges that I have faced during our 40 years together, he has been the one to hold my hand and walk me through. When I have been slighted by one and all, his trust remained unwavering. Be it a personal or a work issue, he has never failed me in any manner whatsoever.

Today he has again put his trust in my hands and I cannot fail him. Starting this week I will have to take life altering decisions and stand by them. I will have to answer questions, will have to face commiserations and listen to a plethora  of advice with a smile on my face and yet firm in my mind that I will only follow my intuition and hart. This is a journey I do not look forward to and yet cannot escape. The roadmap is not in my hands neither is the final destination but whatever it may be, I will be held responsible for every step.

To be able to undertake this journey I need to fill my emotional bank to the brim as I will be drawing on it to simply keep myself afloat and moving ahead. This can only be filled by the love, trust and support of all those who have believed in me in the past years and have become more than family. Without each one of you I will not be able to keep my brave face on and not break. I hope you will be there for me.