Once upon a time ....

My vacation job during the final years of college landed me in a building right next to Churchgate station. That did not help me because I lived where the nearest station, as it might still make rail sense to some of you, was part of the central network while Churchgate was the western suburban terminus.

Even after I joined the ranks of the commuting millions, I would often ignore the shorter route and walk straight to Flora Fountain from VT and then turn right towards Churchgate. That’s when I would pass the well.

“Strange location for a well,” was what I probably thought when I saw it the first time, nearly half a century ago. Later, I would gather that it was sacred to the Parsis, who worshipped fire in the few temples I would occasionally pass by.

Little did I know then that I would go on to learn a lot more about Parsis after I got married to one.

And just a couple of days ago, I finished reading Waternamah,  a commemorative volume to celebrate “300 years of Mumbai’s Bhikha Behram Well”. Yes, that very well.

My faith or the lack of it did not come in the way when I read the book. But it definitely “watered my faith”.

“Faith. Without it we are deadwood; even the atheist reposes faith in what he considers its opposite. Faith is at the heart of our human-ness and our humane-ness.

“Then there’s Water. Without it too we are dead. Human, animals, plants all need this life force. As does planet Earth itself.

“Faith and water. This duo is the mystic wellspring of our revered Bhikha Behram no Kuvo.”

Bhikha Behram sank this well in 1725, obeying a persistent dream and despite the scorn of all. After all, who sinks a well right next to the Arabian Sea, as it was then? Surely, he would get useless brackish water?

No! “Lo and behold, almost immediately, they hit upon an underground freshwater spring.”

Six months later, the well would save the life of Mumbai. A terrible epidemic had forced the closure of all other wells that were contaminated. This was the only well that safely quenched the thirst of half of Mumbai’s population, including animals.

Chance or faith?

As the Bible says: “Faith is the assurance of things hoped for, and the conviction of things not seen.”

One of the contributors to the book writes: “This have I learnt in all my years as a neurosurgeon: only love—the tenacity of it, the belief in it and the infinite shapes it can take—makes life more stubborn than death.”

It has taken stubborn love and faith for the well to survive so far.

In 1994, a toilet block came up within a few yards of the life-giving well. After a long-winded court battle, the threat to the sanctity of the well was demolished.

In 2004, “miscreants destroyed all the beautiful leaded stained-glass panels that adorned the pavilion around the Well.” Those were restored.
 
More recently it was learnt the Mumbai Metro Line 3 would pass near the well. In 2017, the metro authorities assured that all precautions and mitigation measures would be taken during tunnelling. “The tunnelling has been completed and no adverse effect noticed.”

Unsullied, “it has continued to slake the spiritual thirst of the community—as well as the biological thirst of everyone, irrespective of caste, colour or creed.”

If we must have wars, let those be only to quell those who are hellbent on sullying the peaceful water we need for our very life.

Then, very like this well, we shall all live ...

...happily ever after.

​Thank you for this book, Bachi Karkaria!

Two recent conversations with well-placed founder-friends left me with one question. Is two-way boss-subordinate emotional dependency healthy in today’s professional world?

She had just sold the three-decade-old company that she had built from scratch. It was a good sale. Yet her tears conveyed regret. She was sad how the new bosses were treating her erstwhile loyal colleagues.

As she put it, some of “my people” had moved out when the sale process was on and didn’t have to “suffer”. Apparently, the new owners did not find the loyal ones up to scratch and were trying to beat them into the shape they wanted.

Should she have simply disconnected after the sale?

The other founder had recently celebrated his birthday at an informal gathering that included most of his employees. They jostled to get hold of the microphone to sing his praise. The words differed but the tune was the same: “we are here just because you are”.

He was obviously thrilled but modest in his response. Was all the adulation just an attempt to sweeten his mood before the next appraisal?  Other leaders of the organization were present, but he alone mattered.

The day he decides to put his feet up (not too far given his age and health) would the decades-old organisation simply crumble?

Was it positive two-way loyalty on display in both cases? Or self-destructive emotional dependency?
​
What happens when bonding becomes an inseparable emotional crutch the boss or the subordinate can’t do without?

A desperate need for a crutch at the workplace is probably a sign of emotional disturbance, opines Lovaii Navlakhi (MD and CEO, International Money Matters). Lovaii describes both sides of workplace love. “A manager may want to be liked or even loved. But a true leader would want to become redundant. On the other side, if you have been a loyal employee for long, the question you ought to ask yourself is do you want to be a boss one day or be a perpetual follower?”

The equation is very situational. Is emotional dependency a tradition? Does the environment allow dependency? Regardless of what the emotional ecosystem is like, it boils down to the maturity of the individual employee. Are you aware of and alert to a world outside your workplace? Are you confident enough to accept a new challenge and move with the times?
​
As for the entrepreneur who let go of the company but not her emotional attachment, Lovaii feels she ought to focus on why she made the sale in the first place. What is it that you would like to do with your experience, skillset and life now? 

​It continues to be in vogue to describe the workplace as “family”. Possibly an expression HR would like to use with a view to retain and attract the talent they need.

But some owners are wary of the terminology. As long it suggests common values and goals, and, more importantly, civil relations, it is fine. The problem starts when some employees begin to take the organization for granted because the “family” will take care of them regardless of what they do or don’t.

It is up to the owners to discourage toxic emotional dependency. More often than not, HR steps after the toxicity has done serious damage.

Sunil Wariar (independent HR consultant; was head of HR at Future Generali India Insurance) believes that the “family” is the right description, provided the organization is “a collection of people with common shared goals where every member is respected for their contribution with pride and conviction to support and succeed the leader.”

It is not uncommon for a leader (or owner) to slave-drive the team, drawing comfort from obeisance, without bothering to share where the team is, where they are headed, and what is expected of them to reach where they ought to be. “When this doesn’t work,” Sunil says, “the leader brings in the concepts of emotional connect and loyalty as remedial measures, without bothering about the root of the problem.”
​
He is all for emotions in the organization, which is after all made of people. However, “it has to be such that it brings in passion, innovation, discussions and disagreements out in the open to get the best from the team. Blind loyalty and subservience with no regard for truth or original thinking cannot sustain an organization.”

Mehernosh Mehta (VP, HR, CG Power and Industrial Solutions) thinks emotional dependency at the workplace is very normal and common. While the entrepreneur who is unable to detach herself from the members of her old team even after she sold the company might be a rarity in current times, Mehernosh thinks it boils down to trust.

“For the juniors, the connection offers a sense of dependency and security,” Mehernosh observes. “Things can get very difficult at work, and one is always on the lookout for a benefactor or guide. It brings comfort and encourages loyalty. For the leaders, who are often lonely at the top, it helps to stay connected.”

It is a “healthy psychological transaction”, a give and take. But closeness can cut both ways. One can get way with the corporate version of blue murder, simply by being “close” to the boss.

Mehernosh points out, “HR cannot stop people from forming relationships. But those relationships should not turn into power centres that adversely affect the organisation. There is a difference between being aligned to the powerful and being loyal to the organisation at large. When the need arises, HR should stand up for the organisation and those who are for it, without being drawn into power tussles. We cannot have one coterie dispensing justice, taking decisions and bypassing other functions. Such unhealthy relationships must be discouraged.”

Once upon a time, it was common for a person to spend their entire working life with the same organization. Even their obituary would name the organization they used to work with. Today, things have changed drastically.
​
“While there are always exceptions,” Mehernosh says, “loyalty has become a misnomer.” In today’s startup culture, the owners are focused on recovering their investment. On the other hand, the employees are game to quickly jump to wherever the grass looks greener. 

Mohan Joshi (Strategic Advisor and Master Coach; ex-President, SCHOTT Glass India) believes “emotions do play a role but within limits.” Regardless of how long one has worked for an organisation, that work was rewarded.

“Today you are required to solve tomorrow’s problems. Owners are looking for those competent to navigate this period,” Mohan adds.
​
He believes, “Emotional bonds may have limited value; competencies matter more. And if you have moved on, prioritize your action plan, not past loyalties. Only competencies can guarantee survival.”

Human beings are emotional by default, though we may rationalize otherwise. Emotion is a good foundation to build trust on and that can become a solid structure of commitment.
​   
There will be departures of employees and changes in ownership. Both can bruise less if the transitions are planned well. As long as it does not lead to conflicts and confusion, the entrepreneur who sold her company is perhaps justified in guiding her old colleagues for their betterment.

No one can truly judge a new employer until you have been in there long enough. In the long run (which tends to be rather short these days), what truly matters is the kind of work you do and how your boss values your contribution.

Whether you are looking for a new job or a new enterprise what is important is to learn from the experience. You may remain true to your emotional nature but you must be dispassionate about assessing your own strength and goals.

Today when shallow engagement and quick likes matter more than deep connection and identification with an organization’s professed values, it does not matter whether the organization is called a family or not—as long as both employee and owners feel at home.

​Emotion has nothing to do with it. Or has it? 

This story will shake you up. Even if you are already numbed by what you get to read in the media these days. After all, even the seasoned psychotherapist who shared Sahira’s story had goosebumps while narrating it.

The story is about her, Sahira and him, Nasir. You will not be able to forget her at the end of it. And not want to remember him.
​
We do not know what happened to him. But if he were to tell, this is probably how the story would begin in his entitled voice.

​Let us now shift to Sahira’s perspective, as described by the psychotherapist.

“With no footwear and no money, she ran for her life and that of her unborn child. Her parents took her to a hospital, lodged a police complaint and also filed for a divorce.

“Her own family advised Sahira to choose abortion because she was very young and had a whole life ahead of her. She could get married to someone in a few years and settle down. Her family didn’t have enough money to support one more member.

“However, at the age of 19, Sahira decided that she would not remarry but raise the child on her own.

“Her divorce case lasted for over six years. She felt she was being raped again and again in the court room as the lawyers pestered her with questions and made her go through the whole case in agonizing detail.

“During the sixth year of the case, Nasir was caught by the police in another rape case. He was apprehended in his car while he and his friends were returning to Pune with the victim, from the same farmhouse where Sahira was once raped.

“The judge issued a warrant for Nasir’s arrest. Left with no other option, Nasir’s lawyer reached out to Sahira’s lawyer for an out-of-court settlement. Nasir was ready to give complete custody of the child to Sahira and also give her a divorce, if she would let go of all charges and cases against Nasir and also let go of the huge amount owed to her in alimony arrears. Sahira agreed because this would free her daughter for life from having to maintain any contact with Nasir. For Sahira, that mattered the most.

“Sahira had to give up on her dream of becoming a doctor. But she didn’t give up on her dream to be a successful woman, a responsible daughter and a loving mother.

“She has worked mainly with international banks and is currently in a leadership position in a European bank. An alumna of one of India’s leading institutes of management, Sahira continues to pursue her doctorate in organisation management.

“Sahira remains unmarried and stays with her daughter in a beautiful house she owns. Her daughter, an academic topper, has grown up to be a mature and responsible young graduate.”

Do read the complete post by the psychotherapist, Prerna Shah, here.

At the end of it you may want to curse the villain. Or, more positively, follow the victim’s example and celebrate her victory over “fate”. You can, if you badly want to. She is a living example.

The main challenge when you take a flight that lands at 2 a.m. is not the sleep you lose. But to ensure that the driver of the cab who picks you up will stay awake and alert through the journey.

My strategy remained the same this time too. Greet the driver heartily and after establishing our respective identities, start a conversation about the latest in local politics. Never fails to keep the conversation flowing and eyes open, especially when you are in Kerala.

Of course, as always, I had taken care to quickly scan the interior of the cab for words, images or colours that would have indicated if the driver was already aligned to a political thought or a party. Again, as always, I started out with some innocent questions, expected of an ignoramus not tuned into the here and now of the political landscape.
​
This time my plan failed. Or, maybe, he sensed pretty early that I was a mere pup when it came to politics. So, after a short pause that threatened to induce sleep, I latched on to a topic that was making headlines all over.

“Isn’t it frightening,” I began. “Small school children getting addicted to drugs. They become rude, violent and don’t hesitate to kill. What is happening to God’s Own Country? The most literate state?” I patted myself for that closing. It was sure to kick off a long conversation.

Instead, sitting as I was right next to him, I could discern a change in his expression. Suddenly, he slowed the car down. I looked around to spot a reason. No teashop or public toilet around. All I could see was a signboard that identified the building across the road to be a government school.

He was pointing to that school. Then he turned to face me.

“My daughter studies there. She is in the eighth standard. My son is also there, three years younger,” he paused. His turned his face away and wiped his face on his sleeve. Was he crying?

I remained quiet as we resumed our journey. The silence persisted. Then he spoke, almost in a whisper.
“For you, these are just headlines to talk about. For me, this is my life, my family.” There was anger in his voice and sorrow. Then he shared his story in bits and pieces.

“This has been going on for a while. Everyone thought it was localized first. That was the excuse our leaders used for a long time. Now, it is too big a fire to hide.

“Politicians don’t even bother with justifications and promises any longer. Yes, some of the drug runners get arrested once in a while and it becomes big news. Usually, they are out in a week or two. There is too much money and power at play.”

He stopped the car for a tea break. I refused his offer of a cup and waited in the car for him to return. I was disturbed. It was one thing to read from far away and arrive at righteous opinions about the deplorable state of affairs. It was another to be in the middle of it all and live life on the edge, day after day.
​
He had half a smile on his face when he returned and started the car. I asked him: “So, how do you handle this? How do you protect your children?”

“My wife I and I make a conscious effort to be not just parents but also good friends to our children. They are free to talk to us about anything. We do not rush to judge them or punish them. Thankfully, they are smart and are doing well in school. We just sit and talk. If my daughter has something to say that is strictly for feminine ears, she opts for a private conversation with her mother. My son is crazy about football, and he would rather discuss that with me, thought I am not a footballer. We have our disagreements, yet we try to keep one another happy.”

Where did he get this idea from? Did someone counsel him and his wife? Did they watch some YouTube video?

“We have been like this right from the time we married. Our family life never had a man’s side separate from the woman’s. We saw no reason to change our way even after we had children. I do not know if we are doing right or wrong. We just want to keep everything transparent. It is not about right and wrong or good and bad. We just hope that when we discuss everything in the open, we will be able to prevent any serious problem ... or at least nip it in the bud.

“Yes, we talk about the drug problem also. They have told us about a few things they have seen on the way to school. Fortunately, their school appears to be safe so far. Maybe because most of the students there come from relatively poor families. Not much money to get there. But there are some teachers in our neighbourhood who work in bigger schools. They tell us they are afraid. It is just a job for them now and they continue only because they cannot possibly get another job here.”
​
We happened to pass a church. He slowed and bowed his head. The same thing happened when we later crossed a temple and a mosque. He was conscious of my gaze and answered my unasked question.

“You have probably guessed my faith from my name. But honestly, I have lost my faith in humanity. Our only goal now is to divide and exploit. My only plea to God, wherever He is and whatever we call Him, is to help me and my family.”

We were very close to my destination. He had something more to say.

“We want our children to study well, find a good job and settle down somewhere outside. Like you, they should be able to speak English and do well to fly from place to place.”

I was on the verge of defending myself, but we had already stopped at my spot. So, I let it pass.

After I paid him, he asked my permission to contact me once the children finished their school. Maybe I could help them find a job somewhere far away from here?
​
All I could do in response was give him a long hug and walk away. I didn’t want my tears to dilute his hope.

​The birds were hailing the rising sun with their chorus. As I slowly wheeled my bag along, I tuned into their songs and focused on the gentle light in the horizon. I desperately wanted to be positive. Maybe, just maybe, God would return to reclaim His country and save His people.

Aspi Shroff was warned to be careful around them as he prepared to interact with the young inmates at the remand home. “There was scorn and rage in some of those faces as they moved past me to occupy their seats,” Aspi remembered. “The unspoken challenge was: you think you can mend us now, old man?”

The transformation after Aspi finished his activity was unbelievable. “Some of them were in tears. One of them told me that he was a good person inside. But someone in authority had ordered them never to get married even if they were released. They were bad people because their parents were bad; if they got married, their children would also be bad.”

The children were willing to delay lunch (something they always rushed to, given the strict timings at the remand home) just to take one more look at the two mirrors Aspi had used for the activity—one broken, one intact.

​The broken mirror showed a broken person, while the other mirror proved that the person was whole with wholesome possibilities within. What was broken were the perceptions, one’s own and of others.

The two-mirror activity is one of the several that the Shroffs use as part of their Possibilities Universal initiative. Their objective is to open up and activate innate possibilities of strength, wisdom and peace in all, through interactive workshops.

​After graduating from IIT, Mumbai, Aspi had also taken the “usual path” of employment, business, etc. He went on to marry Yasmin who was a teacher. Their urge to do something different, to give back to society, led them to an orphanage. “It was a very unpleasant experience,” Aspi remembered. But they were not ready to give up.

Then he chanced upon a small book, Thoughts of Power, written by Swami Vivekananda. “That changed my life. So much ancient wisdom expressed in such simple words.” The book encouraged Aspi to absorb even more wisdom from Indian philosophy, and dive into the illuminating ocean of quantum physics, astrophysics, neuroscience and other fields. Soon, Aspi and Yasmin were conscious of their own possibilities and ready to help others discover their own.

They once happened to conduct an activity for patients at a prominent cancer hospital. At the end of it, a young woman declared her intention to stop all treatment as she was sure the cure lay within herself. “The doctors had to persuade her to continue treatment while remaining positive. Last I heard, she had a remission and did indeed finally stop all treatment. While this may be an exception, I do believe that your state of mind has an important role to play when you are fighting to overcome a difficult obstacle in your life,” Aspi said.

As an artist, Yasmin was instrumental in introducing the use of puppets as a therapeutic activity. During the activity (usually with children) the puppet dons various masks representing negative emotions. “Each mask changes the appearance of the puppet, but it is only temporary. With just a flip, the masks disappear and you become your true self,” Aspi explained.

They were once conducting a street show, when a child ran away with the puppet. He approached a policeman who was standing some distance away. The boy demonstrated the puppet activity to the amazed cop. Later, the cop came back with the boy and the puppet and appreciated the activity.
​
At a college event, most students were fascinated by the two-mirror activity. However, one student chose to walk away abruptly. Aspi and his team were puzzled, but they did not stop him. A year later, the student came back, with another student in tow. “Please show him the mirrors,” he demanded. Later, he explained: “You have no idea what I was going through at that time and how that activity helped me rediscover myself. Now, this friend is going through the same things, and I want the mirrors to help him too.”

During a session at a hospital, Aspi spotted a bunch of patients sitting some distance away, not at all interested in what was happening around them. “I approached them and showed them a small piece of paper and challenged them to pass their whole body through the paper. They were skeptical but I persisted until they offered some possibilities. At the end of the activity, they were no longer focused on their helplessness but were actually laughing. There was no denying destiny, but at least engaging in some activity helped to ease their pain.”

Possibilities Universal exhorts everyone to “celebrate our possibilities through playful interactions, visualization, meditation, and games that fill our hearts, minds and lives with our possibilities.”

For nearly three decades, their activities have helped promote different aspects of wellbeing including mental, emotional, social, environmental, economic, and spiritual.
​
More strength to you, Aspi, Yasmin and team!

You have serious health issues. On first assessment, the doctor gives you less than 100 days to live. More than 20 surgeries and 10,000 days later, who do you thank for letting you be you, not just alive? Yes, your own attitude matters. Then there is your doctor, the medical team, friends, and close family. If you are very lucky, you will also be grateful you had Nancy on your side.

If you have seen the movie, I want to talk and read the books by Arjun Sen, you will know who Nancy is (was, sadly). I had watched the movie before I read his books Raising a Father followed by Unquit Forever: Keep yourself in the game. The latter (the title of which sums up Arjun’s attitude towards life despite a prolonged standoff with death) told me more about Nancy.
​    
When Arjun met Nurse Nancy for the first time at the hospital, “I heard her scream, ‘Arjuuuun’ way before I saw her.” Then, she “pulled me into a bear hug.”

Then Nancy asked him a question. Did Arjun think of himself as friend and family? She explained: “You wake up with yourself, you are with yourself all day, and you go to bed with yourself. You are your best friend and companion. There is no hiding from that.”

“Arjun, in your journey of living your life, you have to learn to trust me now. I know it takes time to build trust, but in our case, just force yourself to start with 100% trust and then see how I live up to that.” Those are Nancy’s words as quoted in Arjun’s book. She asked Arjun to let her into his life so that she could help him.

Once Arjun wondered how she managed to connect so deeply with every patient. Nancy replied: “You didn’t come in as a patient. You came in as a human being. Don’t you deserve love, kindness and attention? That’s what I do. I fall in love with every patient every time. Unless you love the person, you cannot care. I have heard others say that one has to love what they do. That does not work for me. How can I love my work? I love people and every patient that walks into my life. I fall in love with them. They deserve the love.”

There was a time when Arjun, the consummate marketing man, was considering suicide. Nancy happened to call when he was driving and sensed what he was planning. She said, “Arjun, hear me out clearly. You are a survivor, not a quitter. Your mind will not let you quit. Whatever you are planning, you could fail in it. Do you know what will happen next? You, the branding man, will get defined as the person who failed both in life and death. Is that how you want to be known?” That prompted Arjun to take a U-turn in life and convert the bothersome headwinds into positive tailwinds.

Then, one day, Arjun got the news that Nancy was no more. She had taken her own life. Why? Her husband told Arjun: “Nobody knows why it happened. She finished her shift and left quietly. Her phone was turned off. I guess everyone had Nancy. You, all her other patients, doctors, her friends, and us, her family. But Nancy did not feel she had anyone. She must have been hurting badly, suffering all alone.”

This is how Arjun sums up his connection with Nancy in his book: “She walked into my life, ready to rescue me. But she never made me feel rescued. She made me feel like I was still me, but a better version. Unfortunately, our connection was only about me. She knew everything about me and how to help me get back in life, not just live but run in life. I wish at least one more time I was standing in front of her, with open arms and calling her name, ‘Naannnncyyyyyyyy!!!!’ and inviting her into a big hug.”

Even if you have seen the movie, do read Arjun Sen’s book, Unquit Forever: Keep yourself in the game. It will take you deeper into his life, and the lives of those who made his life a marathon he successfully started and finished—including Nancy. 

Are you fortunate enough to know a Nancy who loves the people under her care beyond the clock and duty? And if you do, do you really, really know her to encourage her to live on, love on?

When the doctor was first describing her cancer, Katie Doble, 32, stopped listening for some time. Because she had a decision to make. Should she be planning her wedding or her funeral? Her boyfriend had proposed to her just ten days earlier.

Katie went on to get married. She also prepared for her funeral but, thankfully, that must wait.
​
Her first symptom had appeared in May 2013—"a strange vertical black bar swimming through her field of vision”. It was diagnosed as uveal melanoma, a cancer of the eye. The first line of treatment involved a “radiation-emitting metal disk placed in the back of her left eye”. As feared, that led to her losing vision in her left eye.

On the positive side, her doctor said the chance of her cancer spreading was less than 2 percent. In April 2014, an ultrasound found no signs of metastasis.

Seven months later, just after Katie’s engagement, new scans revealed that her liver now had a dozen lesions. Like most afflicted with the deadly C, Katie was anxious to immediately start the treatment the physician had suggested, the one that would have given her some 16 months to live.
​
Fortunately, she had a rare advantage. Her father was a doctor, who was already exploring more promising options in the stage of clinical trials. On his advice, she refused the treatment and entered a trial at Memorial Sloan Kettering Cancer Center, New York. 

Five months into the trial, her tumors had grown. She was moved to a second arm of the trial that added a second medication to the regimen. The side effects of the combination “kicked my ass”. But she braved it. Determined to overthrow cancer as the ruler of her life, she went skydiving. As she floated down, she tasted the salt from her “happy tears”.

She had to exit the trial because the tumors continued to grow even after two months on the combination therapy.

Then she joined a second clinical trial at UCHealth, Colorado in September 2015. That too she had to leave after one treatment on account of gastrointestinal complications.
​
Given that it is not easy to access a clinical trial, and the heavy costs involved (estimated at $600 a month in 2015), most cancer patients hardly get to join one. Katie was already a unique case having participated in two. 

In November 2015, she opted for an FDA-approved treatment of radio embolization. Thirty million tiny radioactive beads called microspheres were injected into the blood vessels supplying the tumors in the right lobe of her liver. It worked! The tumors stopped growing and some even shrunk.

Heartened by this, Katie took a break to focus on building a house, “as one does when you’re trying not to die.”

​She had outlived her doctor’s first dire prediction, but the tumors were thriving in the untreated left lobe of her liver. So, she joined a third clinical trial, again at UCHealth. That trial too went on to fail.

In September 2016, they repeated the microsphere treatment, this time for the left lobe. The cancer gradually stopped growing.

One morning in May 2018, she stumbled out of bed struggling for her balance. A brain MRI revealed that the cancer had now spread to her brain. Gamma Knife radiosurgery eliminated the tumor. However, her liver tumors were growing again.
​
Going by a study published in 2019, “the four-year survival rate for Stage 4 uveal melanoma patients is only about 2 percent.” By now, Katie had taken part in three clinical trials and also received three additional treatments. Yet three or four tumors persisted. 

In July 2020, Katie started her fourth clinical trial at the University of Pittsburgh Medical Center. Dr Udai Kammula, the doctor leading the trial, had been after uveal melanoma for almost a decade, because it is “so devilishly difficult to fight”.

Dr Kammula injected her with 111 billion new T cells, after first wiping our Katie’s own immune system. A month after the procedure all tumors were gone or shrinking. The one which did not was surgically removed.

​Finally, Katie was cancer free. 

​Today, she works as a recruiter and gives talks to pharmaceutical and biotechnology companies and nonprofit cancer organizations. She lifts weights and rides her exercise bike when she and Nick are not enjoying golfing, biking and hiking.

“Had I made the choice to not get a second opinion, I would be dead,” Katie said. 

How would Katie have fared, if she were in India? Is it possible for a patient in India, handed a grim prognosis, to take a chance with an experimental remedy that is under clinical trial?

Dr Santam Chakraborty, Senior Consultant at Tata Medical Center, Kolkata, co-author of a paper on “Geographic disparities in access to cancer clinical trials in India” is not very optimistic.
​
The best person to inform a cancer patient about a clinical trial possibility is their oncologist. However, as India does not have a very integrated healthcare system, the oncologist is most likely to offer trials running in the hospital they are attached to. According to Dr Chakraborty, given the limitations of the clinical trial registry in India, “finding a clinical trial which is appropriate for the patient is a difficult endeavor for the oncologist.”  

In the US and Europe, an efficient, integrated healthcare system makes healthcare records available to all centers. In India, if a patient undergoing treatment in Hospital A wants to undergo a trial on in Hospital B, they will have to undergo a full workup and could be turned away at the end of it for failing to fulfil the eligibility criteria. The patient could have avoided the hassles and the cost of transfer if the data were easily accessible to Hospital B from the records of Hospital A.

There is also the larger problem that in India, as yet, “the clinical trial scenario is not geared towards providing really cutting-edge solutions.” In advanced countries, a new therapy is researched for decades in a laboratory before it becomes eligible for evaluation in a patient.

In India, clinical trials are usually run with products already evaluated in another country. A pharmaceutical company may evince interest if and only if it is sure that there will be a market for the drug in India.
​
Clinical trials in India mostly focus on finding new uses of existing treatments or evaluating efficacy of treatments that have been evaluated in the west or finding ways to make the treatment more affordable. This is in stark contrast to the scene, say in the USA, where a novel innovation could be on trial.

“Even if I were aware that a trial very relevant to my patient is being run in an institution like Memorial Sloan Kettering Cancer Center,” Dr Chakraborty said, “I can offer that to my patient here only if the same trial is being conducted at a center in India.” Most early Phase I trials done in India are for “me-too molecules”, meaning medication already established outside.
​  
It is mandatory for every clinical trial to be registered with Clinical Trials Registry of India (CTRI). “As a patient, I can participate in a trial if I fulfil all the eligibility criteria, provide my consent and my physician is an investigator in the trial,” Dr Chakraborty pointed out. 

Whether in India, the US or elsewhere, there is no telling if every person who enters a trial will be blessed with a positive outcome like Katie was after all her trials. While everyone’s outcome may be unique, Katie has been sharing her experience with all.

“I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.”

It is never easy for the patient and the caregivers. Who helped Katie pull through it all?

"I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone."

Do Katie and Nick have a prescription for those who are going through such tough times, so that they can cope better? Yes! Communicate and laugh!

"We still manage to laugh our butts off!" Katie added, "one of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So, when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he [Nick] loves it!"

How did the bullock cart always come on time to take us to the railway station? Then I was too small to ask and too busy trying to squeeze into a tiny space among the bags and the other members of the family. Nor do I know now; even my mobile can’t tell me.

The cart would shake and sway its way for a long time past many miles of trees and farms until we reached the river. The river with clear water flowing past stones and boulders and fish that swam carefree. 

That’s where we had to get down, cross the river and walk the rest of the way to the station. The elders would get off and carry the bags, stepping confidently from one boulder to another. The whistling of the steam engine would urge us children to run, deliberately stopping once in a while to let the fish nibble at our feet. 

I look up the name of the that river. Wikipedia finds it for me.

“The Kalpathy River, also known as the Kalpathipuzha, is one of the main tributaries of the Bharathapuzha River, the second-longest river in Kerala, south India.

“One of the problems faced by the Kalpathipuzha, like most other rivers in Kerala, is illegal sand mining. This has left many pits in the riverbed, which leads to shrub growth. During summer, the river is covered by a green carpet of Water Hyacinth and other shrubs.”

I am now in a big busy city. I can see two bridges, extending the road from one bank of another river to the other. Above those is another bridge bearing the metro rail. From where I am, I can see everything, and everyone is in a rush.

No one has the time to look at the river, except when you want to fling yet another bag of garbage into it.

The water is sluggish and black wherever it is not smothered by thick swathes of water hyacinth. This river used to attract so many birds. They are missing now. Did all the fish die?
​
Right below my window, they are felling more trees so that we can have another road for more people. The river appears to pause and sigh.

Fires in cities. Heavy rain in deserts. Lush green growth in Antarctica.

There are more roads and more bridges. But we can hardly move because there are too many of us. We build and build. But we get time to live only in vehicles.

The rivers now weakly carry the filth we can’t stop generating to the ocean where the mightiest predator is plastic.

We can’t go back to yesterday. Perhaps, today, we can stop and look at the river. And look after it?

​Are we already too late? Is it tomorrow, no, tosorrow already? 

The money she tightly held in her hand was not enough for her ticket. Her plea “But that’s all I have, and I must go now,” did not move the guy behind the counter.

Seeing that she was short by just a few rupees, I offered to pay for her ticket online. She watched the whole process with suspicion. I handed her the ticket.

She was about to give me the money but hesitated. She walked away a few steps, showed her ticket to a stranger, apparently asking him to confirm that the ticket was indeed for her destination.

Then she walked back to me, gave me the money. “I don’t understand these things. So, I have to be careful.” She was apologetic. I was embarrassed.

The bus started late. She had a found a seat where she lay curled up, hugging a small bag. I wondered if it would be presumptuous to wake her up and offer her a meal where the bus was scheduled to stop next, after a couple of hours.

I must have dozed off. The driver’s loud voice woke me up. “The engine has failed. Please get down. I will stop the next bus. Please ensure it will take you where you want to go.”

As I grabbed my backpack, I looked at the old lady. She was up but appeared unsure about getting down. I explained the situation to her. She waited until another passenger confirmed it.

Obviously, I was far from winning her confidence. Or, perhaps, life had robbed her of all confidence in others.

Now that we were in a different bus, I noticed that she did not sleep for a long time. She kept nodding off but would wake up with a start every now and then to anxiously check where we had reached.

She lay down again when we stopped at a major bus station and the driver announced we would resume journey after 30 minutes.

After 45 minutes, the driver was back on and started the engine. He revved it like mad, filling the bus with fumes but it refused to move.

“Something is wrong. The steering is also faulty. I can’t take any risk. Please board another bus,” the driver announced not bothering to look back at the passengers. There were loud protests and so he consoled us: “You will get any number of buses from here, going wherever you want to go.”

So, there we were, in the third bus, with a long distance to cover yet. I could see that she was determined not to sleep now. Maybe because of all the rattling which was worsened by the condition of the road.

There were not many passengers, and the conductor was done with issuing and checking tickets. I moved next to him and struck up a conversation.

“You think having to change buses twice is a big deal? Just last month, I was in a bus that had passengers who had to change four buses. Imagine, those many breakdowns within 200 kms," he said.

“I am not surprised at all,” he continued. “Do you have any idea about the quality of the spare parts we get? They must be paying a huge price, and someone must be pocketing it, but the buses are not getting any benefit.”

Before the conversation took a contentious turn, I tried to insert a positive note. “It is a good thing that they are introducing modern electric, air-conditioned buses now.”

He laughed. “Electric? Air-conditioned? Do you know the cost of repairing those buses? Those are just not designed to run on our kind of roads. Maybe you can, but do you think people like her can afford those buses?” He pointed to the old lady who was now dozing, seated and swaying.

“Now everyone wants a car, that too a large car. The roads are the same. Always damaged and always jammed. Do you think that is progress?” He smirked.

As if on cue, the bus hit what might have been large pothole, veered off the road and came to a stop.

This time nobody had to tell us to get down. We were all off the bus in a rush. I ensured the lady got down safely. The conductor asked if everyone was safe and unhurt. He got on the phone, trying to find out if and when another bus would come that way.

As we waited, some used their lighter bags as umbrellas to shield from the harsh sun.
Then I noticed her shuffling away. She settled down in the shade provided by a big hoarding. She used her bag as a pillow and prepared to sleep, unmindful of the stones and the dirt. She looked as if she was quite used to it.
​
Involuntarily, I looked up at the hoarding. It showed the large face of a leader who had won the recent election. The text around congratulated and appreciated all the services rendered by him for the upliftment of the poor.

The building is not that old. Yet, the missing lights and rubble all around suggest lack of funds and attention.

The lift stopped at a floor midway, a chair entered the lift, followed by two elderly ladies, one of them standing and walking with great difficulty. “I fell and had this operation,” she explained apologetically. “I just like to go down, sit there for some time and watch the children play.”

The man of the house, who opened the door with a hearty welcome, looked to have aged drastically in a few months. A more subdued “Sorry, I forgot you were coming” followed the welcome hugs.

His wife was visible through the open door of their bedroom, in a helplessly twisted posture on the wheelchair, with the caretaker combing her hair. It was clear she had not placed the visitor; the same one she used to greet enthusiastically whenever they met during their walks.

There was a large cup of tea waiting at the table. The man brought two packets of biscuits. She was wheeled close to the table and her husband. Carefully he broke each biscuit into half, dipped it in the tea and fed her. At one point, she choked and coughed, causing panic all around.

Her eyes were bright and steady on the visitors. Do you think she can recognize people? “She can’t talk. Perhaps she can hear. But I think her brain is as sharp as it always was,” he said. Her trembling hand firmly held on to chair handle as if she was afraid of falling from the chair. Her eyes remained steady, almost smiling.

He spoke of his major worry. Not the food, that was being delivered regularly, like the medical supplies. “The caretaker is planning to go to her village for two months.” Life was impossible for both of them without the caretaker. “We asked my wife's regular doctor to help us. He suggested we should move to the new old age home he has opened. It was a relief for us when we could move to this small flat thanks to a friend. Now to move from here and spend a whole lot of money every month … we just can’t do it.”

They are counting on the caretaker to find a replacement before she leaves. How long will the new person take to get comfortable with their needs? And to provide the constant care she needs through the day? Those are questions best not voiced.

Outside the window, a large tree with clusters of white flowers blocks the view of a lively game of volleyball in progress. One of the spectators, or maybe more, would be sitting on a plastic chair.

The flourishing trees swaying gently in the breeze, extend all the way up the gentle slope. If you can make it to the balcony, you can also see the sun, relentlessly setting.