Stations on the Road to Freedom

Dietrich Bonhoeffer(1906-1945)

Discipline

If you set out to seek freedom, then learn above all things to govern your soul and your senses,
for fear that your passions and longings may lead you away from the path you should follow.
Chaste be your mind and your body, and both in subjection, obediently, steadfastly seeking the aim set before them;
only through discipline may a man learn to be free.

Action

Daring to do what is right, not what fancy may tell you,
valiantly grasping occasions, not cravenly doubting –
freedom comes only through deeds, not through thoughts taking wing.
Faint not nor fear, but go out to the storm and the action,
trusting in God whose commandment you faithfully follow;
freedom, exultant, will welcome your spirit with joy.

Suffering

A change has come indeed.
Your hands, so strong and active, are bound; in helplessness now you see your action is ended;
you sigh in relief, your cause committing to stronger hands; so now you may rest contented.
Only for one blissful moment could you draw near to touch freedom;
then, that it might be perfected in glory, you gave it to God.

Death

Come now, thou greatest of feasts on the journey to freedom eternal;
death, cast aside all the burdensome chains, and demolish the walls of our temporal body, the walls of our souls that are blinded,
so that at last we may see that which here remains hidden.
Freedom, how long we have sought thee in discipline, action, and suffering;
dying, we now may behold thee revealed in the Lord.

Marked people

I just returned as a marked man.  Having been marked by the mark of democracy – ink poured over left index finger. I was one of a few hundred lining up for hour and half or more from 7.00 AM in the morning at a polling booth of about 5 dingy dark rooms and a courtyard of about 400 sq ft. There was these few 100s in 6 – 8 serpiginous queues, waiting in the summer heat, patiently to get themselves marked.

But this is where democracy lives. Not in corridors of power of Delhi or state capitals. In the small villages, slums and residential colonies of our nation! Having the privilege of having a say in how I feel the country should be governed.

As I waited in the queue at the polling station - there was that feeling of being part of a vibrant grass root democracy – where in the midst of a very caste conscious and divided society, the well off and the poor, the educated and the uneducated, the upper caste and the lower castes, the majority community and the minority communities, all standing patiently in line – to be marked and to have that privilege of being part of  this electoral process.

At the same time, there was interestingly an eerie silence of “Nil political discussions”.  Nor much political canvassing or promotions of candidates nearby nor in the near vicinity, even prior to this day. Even prior to stoppage of the statutory restrictions. Which in one sense was discomforting – were the influences already in place – so that there was not much need to further engage or promote? One would never know.

There was also a realization, that there were many who could not be part of this process. My own close friend did not find his name in the list. There were many who found themselves not part of the process – for various reasons. A small community I am part of – quickly checking out – I realized that only 50% of the eligible had the access. And the voting percentage would be about 55% of the total eligible voters. If my calculation is right, then and if I can extrapolate the number – 55% of 50% is 27.5%! Or say – 30% - the 30% of the eligible population only gets the privilege to be part of this process?

As I waited outside the voting station – the dark dingy small closed of area, I waited with some lack of clarity in my mind what my choice should be. But standing there I was disturbed! In a mixed way. There was the many illiterate who were there, who seemed to be much more confident and clearer – with no questions being asked around, how to press the button and which button to press! Where did that confidence come from? Was it that they were already primed by the powers that be – in un-democratic ways, which button to press? There were some indications of this in one to one discussion with some local friends who shared to us, they were told by their community leaders which button to press!

As I walked in to vote and as I went through the list of candidates – I realized where part of the confidence might be coming from. The names were against symbols, and so press the symbol you want to choose - which was what was told to all those who were to vote. But the names itself told another story. The names represented the various majority people groups or castes in the region. The three or four major groups in the locality had one of theirs in the list. And for me as an outsider – all names were the same. But for a local person there was one of their “khantan” against one of the symbols! How would that influence their choices – one would never know.

The educated well off upper caste who were also politically educated, some of whom we knew, seemed to be very clear what their choices would be. The choice possibly decided by group loyalty and other loyalties, which they would not want to talk on the voting day. I am hoping to hear from them one of these days – and ask this question – how did you decide whom to vote for? The confusion seemed to be more with the outsiders, and the educated minority who were uneducated politically! People like us, who knew what to avoid but not what to align to!

But to be part of this grass root process and to consider this as a right and privilege is what gives us a feeling of fulfillment – that we have a say in what happens! That we are part of a such a vibrant democracy that is alive at the grass roots though lost in the corridors of power.

But to have a say with an unbiased mind, not biased by your group loyalties, an uncontrolled choice – not controlled by the undemocratic powers that be, is what we should pray for. A nation that votes with a free mind and will, but freedom under-girded with the desire for justice, liberty, equality, fraternity, and dignity of everyone, as enshrined in our constitution. That the vibrancy of grass root democracy permeates the corridors of power too! And pray that God will bring in leaders who will facilitate this unbiased uncontrolled vibrancy!

Three stories from a friend

Today was a day of sad stories. A 1 day old girl was brought in Neonatal sepsis. The family was feeding her cows milk since the mother had to do the housework. This was the second girl and the father was palpably angry with his wife for perpetrating this crime. When we said the baby needed admission, he flatly refused. There was no point wasting money on this girl he said. He would take her home to die. And he herded his family into their sedan and drove away. All pleas and threats including calling the police fell on deaf ears. And the baby was not really sick and would've surely made it..... 

Then just now a 16 year old girl was brought dead to the casualty. She was 8 months pregnant. She had gone to the government hospital in the morning for breathlessness. From there she was told to go to a private clinic. She visited all the private clinics in M spending an hour or so and a good deal of money in each until she finally reached here. But she had expired on the way, just 10 minutes before she came into our hospital. From what I could gather from the history, she had severe anemia with heart failure..... She just needed a little blood, but none of the series of doctors she had seen was ready to do it...... 

The saddest story is of a little girl whose parents are really keen for her to survive, but she probably won't. Born preterm, at 1.7 kg, she has been with us for 5 days. She is now on a ventilator and her vital signs are falling gradually. Her parents are pushing us to do our best, but she probably won't last the night..... The realities of B are stark.... 

For every girl who is struggling to live there are two who are allowed to die. Is this our nation? 

Causalities of the current context

Working in health care, in rural India, one is used to casualties, sudden medical crisis that are brought into emergency where the team gets together to stabilize the patient before deciding what to do next. Some go on into an acute care ward or ICU, some go into a low-end care or high dependency unit, as the situation may be. Some even go home after the initial stabilization. Most of the casualties that come in are crises that has been waiting to happen. There was a festering wound, a lingering illness, an ignored symptom or disease. Ignored for months together by either the patient or those who are responsible for to take care. And by the time they decide to come in, many are beyond help. They have ignored it so long that the illness is beyond cure. Some have been fooled by practitioners who had promised them a cure but was using their illness for making a fast buck, while the illness is progressing. By the time the patient or his or her family realizes the mistake, it would be too late. And the only thing one can do is – allow the patient to get ready for his or her inevitable end.

And when one talks to the patient or family there is a general feeling of helplessness. It is seen as fate.  Statements are - what else could have happened, there was no other way, the one up there is responsible, he is playing a game with us, we can’t do much…. a general feeling of apathy. Though it is evident that a careful consideration early enough could have helped.

As we look around in our socio-political context, we see many such casualties. There are far too many to talk about, but three to mention here – but the casualty of Truth, Trust and Hope.

There was a time when truth was valued. Leaders were expected to tell the truth. Communities were expected to live out truth as they understood it. Stories of casualties of truth from our broken and fallen society has always been there. But the institutions that govern, that create the broader conversations (the media) and one that preserves the law, were expected to align to the truth and speak the truth. Today it is no more expected. Leadership speaks what they feel like and when confronted – they say it was said in the heat or spur of the moment. They give the glib excuse - they did not mean what they said. The institutions that create common conversations – the media, specializes in false news, fake stories and fake videos. Now there is an industry of fake news creation and another one of fake news identification!  And if one goes by the recent happenings in our nation and in other parts of the world – the leadership of institutions that are to be keepers of the law – they themselves are caught in the web of falsehood – whether by intention or otherwise, one would never know, because truth will never come out!

When did this disease of false truth or so-called post truth disease start? Did we not see this coming? Were the symptoms ignored for years together, that today it is beyond cure? Or when the leadership we put up was promising a cure, were we unable to see and hear beyond the rhetoric? Had we become so callous that we were unable to see the lingering illness, the festering wounds in our nation and communities?

Can the situation be stabilized, with falsehood taken out and truth being brought back in? Can truth be resurrected and institutionalized again, or is it too far advanced that, we can only now allow the illness to progress and take us to the inevitable end – the death of a society and nation founded on truth?

That brings up yet another question – the words made famous by Pilate “What is Truth?”. Truth today is defined as what the majority believes. The majority or “majority voice” or “noise” (you do not need majority to make a loud noise) becomes the accepted truth. The natural progression from that is - align to what the loud voices tell you – that is the truth and live as per this. Or else – face the consequences!

This is where Darwin’s “Survival of the fittest” comes into play. If you want to live and flourish in the such a context – only the fittest can. Rest will just exist. How does one live and flourish – the fittest are those who ignore the casualty, align to the loud voices/noises, and suppress the inner conscience which is telling you otherwise.

Where am I in this journey of  casualty of truth?

The need of the hour, is to create conversations around the age-old question – What is Truth? The need of the hour is not to get overwhelmed by the loud voices that declare the “truth as they see it”. The need of the hour is to recapture our understanding what is really true and then start grass root movements of truthful conversations. 

The other casualty is one of trust. When truth is thrown out, the natural progression is that - trust follows. We already lived in a low trust society. It does not take much to move from a low trust to a no trust society. When loud voices that define and declare truth as they see it, find others who do not agree to their definition of truth, the way forward is – label them, reject then, destroy them. How does one reject or destroy? Not always by violence, but mostly by labeling and segregating. From and Nation of liberty equality and fraternity, the loud voices tell us, we are we and they are they. They are they because they do not accept truth as we see it. Caste, language, religion, life practices are used to move from a low trust to no trust society. It is not the public that does this, the leaders who were expected to be custodians of truth and fraternity.

How did we reach here? Power hungry leaders can come to power only by having followers behind them. To get followers, the best way is to speak whatever that is pleasing to the ears of the masses, defined as new truth though it might be falsehood. It does not matter, as long as you can consolidate the masses around you – using the new truth or falsehood. Many collude for such new relationships and alignments, not based on trust but for short term gain – things that they will gain by aligning with the powers that be. This collusion can gather momentum if one identifies those who does not align with you and label them to be different. And give the masses a job to do – reject and destroy those who do not agree!

Is this trust deficit beyond redemption? Can we return to the nation which we wanted to be – a nation that celebrates diversity and differences, accept people as they are – though they might be of another language, caste or religion? The need of the hour is to redeem communities of trust - communities that are diverse but trusting each other because each of us carry the image of God in us. 

The third casualty emerging out of these two is – hope. People who once hoped for a bright anticipated future living – now starts living in one of the two paradigms. One group – who are keepers of the new truth (or falsehood) live in the new utopia – redefining hope - a hope of a new community or nation state – where diversity, differences are not part of such a future. The other group – a group that has given up hope. Living (existing) with a sense of apathy or at times despair, because truth is lost, relationships are shattering – future looks bleak!

The need of the hour is to rekindle hope - hope that is shared by all - not the majority only but the majority and minority, the powerful and the weak, the aligned and the non aligned....

As a person of faith – for me Truth is embodied in a person – a person who lived and died a life of Truth for the sake of others, even those who rejected him. It is only part of a bigger realization of what truth is– this I do not want to share here, since the purpose of this article is different.  At the same time, as a person of faith, I am constrained to live a life of relationship – because my faith teaches me – love each other, even your enemies. As a person of faith, I am expected and need to live a life of hope – because it is hope that gives us the momentum to live and flourish and not just exist!

Each of us in our nation with different religious backgrounds may have our own definitions of truth. But there is one thing that binds us as a nation – the constitution that states in its preamble  - ‘JUSTICE, social, economic and political; LIBERTY of thought, expression, belief, faith and worship; EQUALITY of status and of opportunity; and to promote among them all FRATERNITY assuring the dignity of the individual and the unity and integrity of the Nation.”

The dignity of every individual, whatever way they might define the truth!  

How can you and I be facilitators of these conversations of truth and hopefully builders of communities of Truth? How can we be facilitators of high trust communities, with all our differences and diversities? And hope givers – giving hope of a community that desires and lives out a life of justice, liberty, equality and fraternity, assuring the dignity of each individual? Hopeful for a turnaround, in the near future – because The Truth WILL set us free!

Support courage where there is fear, foster agreement where there is conflict, and inspire hope where there is despair.” Nelson Mandela

The latter years

As one ages having worked years in institutions and living through much experiences, one faces many dangers.

The major one is the danger of institutional frameworks that limits thinking. 

Working in institutions for decades one ends up having an institutional mindset and behaviour. “Institutional behaviors could refer to any behavior that is more common among individuals within an institution than those not in the institution. ... “

Usually the term "institutional behavior" is used for prisons, mental hospitals, orphanages, large corporations, and government bureaucracies.” But this affects people from all institutions. 

We end up expecting a certain type of behaviour, following rules and regulations, policies and processes etc. These might be important but these  become behaviour traits and limits our thinking. Affecting our ability to think out of the box, the ability to innovate and be flexible keeping impact as the overarching direction. And if behaviours traits which we are used are not observed around us, one gets restless and starts living in the past - constantly reminding others - this is how we lived and how it should be....

These past experiences definitely limits our personal growth and progress in addition to institutional growth and progress. We start living reminiscing the past, and settling into a mediocre way of life. Living much less than our potential. Instead of constantly growing in our understanding and experiences we live and engage based on the past experiences. We stop being learner’s. 

Such a mind set leads to a limited forward thinking. We are no more thinking ahead - and leave the thinking for others. Instead of being available to build the emerging generation who needs support in their journeys of forward thinking we become people who limit not only ourselves but even others in their journeys. And we end up leading a retired life - living in a retired mind set, slowly getting fossilised. 

Protecting ourselves from thus being fossilised needs discipline of impact thinking, constantly learning through a reflective life style.

When I was sharing this with friend - he reminded me “I wonder if a butterfly ever thought as a caterpillar again. It hardly walked on land, hardly ate the same food and was never limited to the same space.”

To fly as a butterfly till the last day of our life....

I wonder

The last couple of decades has been a happening one in health care. Having had graduated in Medicine, 35 odd years back, my generation had the opportunity to be part of these happenings and taste both worlds. The world of health care of yester years and new world that is fast emerging around us.

There are innumerable “happenings” that have transformed health care, but I am reflecting on four happenings or in one sense, transitions. Transiting from one way of functioning to another. Transitions that has brought much celebrations for some, but a nostalgia for some others – me being one with nostalgia's! May be like the Jews who were on a journey from Egypt to the Promised Land, still carving for the meat and the food of the country that they had left, some of us still craving for the yester years! We are promised a new face and system of health care, in the new emerging India, but some of us still yearning for the context of old times….

One such transition is from Medicine being an art and science to one driven by technology. “I remember as a fresh MBBS doctor, spending a few hours with a patient, working up and coming to a possible diagnosis of “Malabsorption syndrome” with all the supportive tests proving it. I, feeling happy about being able to come to a diagnosis! The consultant whom I worked with walking into the ward, standing by the bed side, holding on to the patient’s hands, before even listening to my well-planned presentation, looking at the face of the patient, observing him for a few seconds, and telling me - “He has a malabsorption look, doesn’t he?”. I remember being totally amazed by these clinical observational skills and clinical acumen. I remember the same consultant after listening to the story of a patient with Nephrotic syndrome, just putting his hands on the ear lobe of the patient and responding – Amyloidosis of the kidney! A diagnosis made by the observation of the thickened ear lobes due to Hansen’s disease.”

These were the teachers who taught us Medicine. The art and the science combined. The art of seeing, listening, touching, and correlating with the scientific knowledge they had. Technology was used to support their art and science.

Sitting in an outpatient clinic a few months back along with another young doctor, over an hour or so, both us saw 10 to 15 patients each. In that one hour, I got up at least 10 times to examine the patients – a habit of putting the patient on the bed and doing quick examination, which had been taught to us as mandatory. The young doctor who was seeing patients on the other side of the table, never got up or put hands on any one. The quick history was enough, and the patient was off with a list of tests to be done.

Somewhere in the last decade or so, from art as the soft skills of clinical medicine, science as the logical thinking and evidence, and technology as the supportive element, we have moved into technology as the god of Medicine that we worship. The art and the science are only supportive to technology. But in that transition, the listening, the touching, the observing and the correlating has been pushed into the side lines.

A friend our family, admitted recently to one of the highly acclaimed corporate institutions in Delhi with acute gastro enteritis shared this story. In 48 hours, she ended up paying a bill of 50,000/- - Of course the insurance was there to pay. She had every possible test done including an ultrasound, but she was not touched by any doctor. Doctors came and went – looked at the papers, the x-rays and reports, but never touched her!

I wonder, when I grow old and need health care, what would I long for – being taken through a mill of tests or a listening ear, a touch, a careful observation and a comforting word?

This change has not happened in isolation. This has come out of another change – the change of relationships. Doctor patient relationship which was once sacrosanct, more of a covenant relationship has transitioned into a contractual relationship. This relationship changed over last few years, as health care knowledge expanded. Medical knowledge like many other fields of knowledge become a commodity to sell, and this sale and purchase is driving force of the health care industry. A service sector, that trained professionals to care for those in need using their knowledge, transitioned. It became a knowledge industry that sells its knowledge for a price. If you pay me, I will provide my knowledge against a contractual agreement.

As this expanded, there needed to be structures to support this model. Corporate models of health provision, where investment and return on investment as the bottom line emerged. This is today seen as the ultimate model of health care. Nations saw this as a good way to boost its economy. There are many who needs health care, there is enough knowledge to be sold. Create business vehicles that can sell knowledge and use that to sell health.

And the middle men walked in – the insurance sector – to be the middle man between a need and the commodity to be sold. But health care for the upper class had to be provided in contexts they feel comfortable. That led to the emergence of high-end hospitality systems to support the health care. Over time hospitality over took health and health care. And today even the poor in rural areas look up to 5-star hospitality centers in urban areas as the dream for them to get health and health care!

I remember my grand parents having a family physician who know every family member’s illness and was able to take care of the children and the elderly. But for an occasional referral for a technology supported intervention or surgery, most of the routine issues would be sorted out by that family doctor. A vestigial model, visible in some small villages even today!

But not too long away – a decade back when a patient would come to you, you talked more about illness and its effects and patients trusted your judgement. Money was required but that was a discussion which would not influence the clinical discussions or decisions much.  Today when a patient comes in, he or she comes in with a host of papers of other hospital visits already in hand, information of costs across various centers already known. The discussion goes around, what can you offer at what cost, and under-girding all these is a “can I trust this doctor?” question for the patient. For the doctor, “how much can I get from this patient or his insurance agency?” as the under-girding question. If the doctor is uncomfortable with these discussions the institutional structures will take care of this. One need to be willing to sell your knowledge to the institution, they became the middle man to buy your knowledge and reimburse you for the same.

For this model a compassionate covenantal relationship is no more required. What is required is a matter of fact, commercial contractual agreement and a detached conditional relationship, which ends once the contract is fulfilled.

When I fall ill, what I need is not one who knows everything about my illness and knows what to do only, but one whom I can trust. One who will not allow monetary issues to affect his or her decision making. Is it too much to expect?

The knowledge explosion also brought in another transition. A transition of knowledge from a broad knowledge of the whole body, systems and diseases, to becoming masters of specific systems and specialties. Medicine with the expansion of knowledge had no other way but to become compartmentalized. No doctor could know all what was happening in the various fields of medicine. So, for optimal utilization of knowledge, there needed to be professionals who can develop and expand on their areas of interest. This led to expansion of various specialties.

From being an MBBS doctor, who had a good standing in the society, the upward mobility led to MD/MS of various specialties and then the DM MCH of various super specialties. With this also came three transitions.

A transition from a common medical fraternity to class-based sub fraternities in medicine. In the upper class the so-called super specialists, in the lower most rung the GPs or MBBS graduates and the general specialists the middle class.  The pay packages also got readjusted based on “knowledge level” equated to the degrees you have, with super specialists earning most. Peoples expectations started changing. The more degrees one has, the more money charged, the better the knowledge and better the care and people started expecting specialists to care for common illnesses.

Every other patient who comes to our rural hospital with a tension head ache would have had a CT Scan done prior to coming. If not, they would ask for one. Last week, a patient who  can not afford regular care came and asked us – we were told that an MRI can help in getting a diagnosis for this chronic poly-arthritis my wife is going through, can you get it done for her. It took quite a bit of convincing with them to give up this dream of MRI!

This transitions also led to a compartmentalized care. Patients would get their diabetes managed by a diabetologist, peripheral neuropathy by a Neurologist, Nephropathy by a nephrologist, Cardiac illness by a Cardiologist. Visiting an elderly uncle of mine few years back, I was going through his 23-drug list. I found the cardiologist, the nephrologist and neurologist, along with his diabetologist all had prescribed their own special vitamin preparations for him – thus making his daily medicines to 23 plus!

In this compartmentalization of body between the various specialists, the mind and soul – the whole person is forgotten. Each specialist is concerned with that part of the patient’s body, no one remembers that the person who is in front of you has a mind, emotions, a soul and desires and fears.

I wonder, when my organs fail, do I want a specialist who understand my organs or a doctor who can listen to my worries and my fears along with taking care of my whole body and the organs too!

These transitions have left the emerging generation of Medical aspirants confused. To follow the dream of a upwardly mobile career ladder, the requirement is to join the rat race of knowledge acquisition to pass the entrance examination hurdles. This starts at 8^th to 9^th standard onwards. The boards examination and knowledge are sacrificed for preparation for the NEET – the 1^st hurdle.

Many aspirants – do not aspire, but they are fulfilling their parents’ aspirations. Recently talking to 18 young medical students from a good private Medical college in south, I was surprised. Only 5 out of the 18 wanted to be in Medicine. The rest are fulfilling their parents’ aspirations!

This crossing NEET barriers does not end with getting into MBBS. The moment you enter MBBS and once the reality strikes – you start the next race – preparation for PG NEET. Talking to a group of students from Government medical colleges in Delhi, most of them, by second year, had already registered into PG NEET preparatory coaching’s. The studies of MBBS is left to the minimum to clear the examinations. PG NEET is more important than MBBS examinations.

The one year of mandatory internship is where you pick up your soft skills, the hands-on skills and knowledge of practicing medicine under supervision. For most interns in government and many private colleges, internship is a time to get intensive coaching for NEET PG. Attendance for internship is signed off in the mornings and one is off to study. Basic skills and knowledge that is required to be a good doctor, is left for a day when they get into PG. And this cycle repeats itself during basic PG too – getting ready for the super specialty. For 100 MBBS seats there are only 40 PG seats and less than 10 higher specialty seats. These are fast changing with seats increasing every year, but many aspirants keep following the dream for many years. Their hope is that one day they will go up the ladder of medical education, in the meantime acquire knowledge to cross those barriers of NEET!

There was a time, not so long ago, knowledge acquisition was for the thrill of knowledge itself, to provide better care, to teach and train others and pass on the knowledge to build many others. Today in many institutions, knowledge is only a way to build and move up in their career and life!

One wonders, if such a generation becomes the foundation of the health care system of our nation, what would health care look like a few decades form now?

There are many more such transitions – may be another day I will visit a few more. But I ask myself – am I wrong in desiring for yester years, or should I just forget the past, move on to future – the promised land of a new health care system of the new India?

Why does this happen to us?

It was in 2015, when the Medical team saw this lady. She was in severe pain. Pain due to blood supply to her hands compromised. Couple of fingers were already blue, showing signs of early gangrene. She also was running high fever, with swollen joints, and most of her hair gone. Her blood tests revealed moderate renal failure too. The medical team had come to a diagnosis of an “immunological disorder” – Systemic Lupus Erythematosus, with multiple organ system dysfunctions, and was trying to communicate to her in laws, the need for immediate intervention with drugs to suppress her immune system, and the need for a life long treatment. She was from a lower socio-economic back ground and had no way of supporting herself.

The in-laws didn’t seem interested. They had only one concern – how many days and how much money would it take. She must get home as soon as possible and take of her children and the house. She had four kids and her husband (their son) was away. After much negotiation, the father in law agreed for a few days of hospitalization. The treatment started with high doses of immunosuppressants. After a week or more of a stormy hospital course, she was ready to go home. But to be on life long follow up and treatment if she is to be kept alive and functional! Again, started the negotiations with the in-laws – reluctantly they agreed. The lady had nothing to tell the team, she was a silent by-stander to these negotiations on her life and treatment being taken up by her in-laws.

She went home but the medical team had no expectation of seeing her again. But to the teams’ surprise, she was there in the out-patient department after two weeks, for a follow up. By then she had developed a pneumonia, the effects of a suppressed immune system. But she was confident and sure, that she wanted to be on regular treatment. Her tenacity surprised the treating doctor. Unlike the usual women from the local community, against the desire of her in-laws, she was willing to come and get treatment, come what may.

Her regular visits continued without fail, and she slowly started improving. Almost a year into her treatment – one day she asked the doctor. Doctor, can I have a “tubectomy”? The doctor asked the whereabouts of her husband – the one who has been missing from the scene for the last year or so. She reluctantly shared part of the story – he is in jail, for no wrong of his, will not be out for three years or more. The doctor in response asked they why you need a Tubectomy – she replied, “Mahol accha nahi hei”. The family context is not good, she stays in a joint family system and her in laws are not treating her well, and she is afraid…. The unsaid fears were understood, she was referred for tubectomy – she never got it – reasons unknown to the team then.

6 months passed – she returned one day for her regular follow up, tubectomy still not done. On asking reasons - she said, I am afraid – if something happens to me, my children will be orphans. The family situation is not good, my in-laws are not behaving well, and I do not want anything to happen to my children. I will go through what ever I must and wait it out. Another few months passed, she had been regular on her medicines and visits. But some where during this time, her in laws were no more to be seen, she was off and on accompanied by her mother. 

It was a week back she walked in all worried and disturbed. Asked the doctor – please get my pregnancy test done. The doctor who knew her story asked, are you suspecting pregnancy? She said I want to know – she was sent off for a urine test which revealed that she was not pregnant. Once she settled down, the story came out. Her husband had come out of jail but had moved out of the state to Jammu for work. She had visited him and was afraid that she had conceived. Her abdomen was swelling up which she was sure was a pregnancy. An abdominal examination revealed that she was having large amount of fluid in her abdomen – due to Tuberculosis of the abdomen! An infection secondary to her immuno-suppressed state.

The story continues 4 years since the illness – no signs of “they happily lived ever after" ending – she continues to struggle with her illness, her relationship with her in laws, husband away 2000 miles away trying to earn a living to support her and children. 

Her mother turned to the doctor and asked a question – will she live…? Why does this happen to us? A difficult question to answer - yes she will live, but why does this happen to her and such families who are caught in complexities of life...

May be the question for the treating team should be - what good can we bring out of this situation - how can she and her family find meaning in the midst of such meaningless suffering....