hope

Ladakh: A Trek Through Love, Longing, and Life

Ah, the mountains of Ladakh. They cradle me as if I were resting my head in my mother’s lap.

It’s like a coming home to, when the mind is craving some clarity and the heart is aching for some solace, when you arrive at a crossroad in life and are figuring your way out.

There were questions that needed answers. And with just that intention—to seek—I decided to sign up for my first ever week-long trek in Ladakh, nudging me to step some more out of my comfort zone, and to add to my existing database of life lessons.

A view from Leh Palace

The initial few days of my time in Ladakh before the trek saw me working remotely with clients in therapy sessions, with acclimatizing walks and hikes interspersed in between. Being at an altitude of 11,500 feet and breathing rarefied air with less oxygen, I had to take care that I didn’t get acute mountain sickness.

Just being in Leh, the chatter in my mind quietened down, as I took in a panoramic view of the mountains all around me, and observed the people in town silently milling around, going through their day. Life was uncomplicated here, unlike what we city dwellers are encumbered with.

The original Markha Valley trek which I was supposed to embark on was literally washed away as the incessant, untimely rains cut off the access road to Skiyu, the starting point of the trek. The ground team of Boots & Crampons, the outfit that was leading our trek, sprung into action and it was decided we would traverse the pristine, less trampled trail of the Stok valley, through Matho La and Shang La, the two mountain passes, all the way to Shang Sumdo village. “It will be more challenging,” is what we were told. Of course, we’re in!

Moose, the protagonist of my story, at the start line :)

After a short bus ride from Leh town to Stok Valley, we started our trek on Day 1 from Stok to Chang ma. Soon a black dog came bounding by and stayed close to my heels while 2-3 other strays also joined in.

“How long they will walk with us?” I wondered. “Will they stick with us through the 5 days?” I asked Naresh. You will know too, as you read along.

Day 1 was supposed to be a short 2-3 hour walk but fairly soon into our trek, we encountered our first challenge: of crossing glacial melts that were streaming down as rivers, with rapid, swirling waters. My first ever river crossing on foot!

We took our hiking boots off, wore them around our neck, and saddled with our backpacks that had the day supplies we needed, started to cross the river. The water was icy cold and we had no idea where our feet would land because it was a rocky bed, hidden from plain sight, which made figuring out where to put the next step even more uncertain.

“Drag your feet, don’t lift them up,” yelled Chetan, our team leader from B&C, & Naresh, the skilled guide, over the sound of the loud, gushing water. Focused on not falling and getting swept away, I had no clue what they were saying. But with their strong support, all of us soon managed to cross the rivers, not once but thrice in one day, with my heart pounding loudly every time. Here came lesson # 1: Keep your faith bigger than your fear; and lesson # 2: Take one steady step at a time and before you know it, the worst would be over. Wait, there was lesson # 3:  Always look ahead and keep marching on.

One step at a time

From afar, I saw a steep ascent on a hill coming up. It seemed daunting to say the least, but the river crossings earlier in the day gave me the confidence that nothing could be more challenging than this. Except when it is steep AND the 50% less oxygen in the air makes you winded really quickly. You begin to wonder just why you signed up for this. The lungs are screaming, the muscles are begging for oxygen to summit beyond the elevation, and the mind is going bonkers. Until you realize that it is just chatter and you unhook from it and carry on, reminding yourself that the views are always the best after the toughest climb. And so they were.

On reaching the top, there was a huge construction of cairns and a small temple that the locals had built to keep the valley protected. The prayer flags looked resplendent in the sun as they fluttered merrily, seemingly excited, bringing us some much-needed energy. We could see the gorgeous valley ahead, with the river flowing through it, inviting us to trek some more.

Lobzang, the quiet, attentive helper in the kitchen was waiting for us with tea, coffee, indulgent hot chocolate and some snacks as soon as he saw all of us trooping in from a distance. No phones, no radio sets, just a keen eye on the look out for the guests to arrive, and under the skilled chef Kunga, the kitchen staff ensured we were well fed. After short acclimatizing walks before dinner, and some more chit chat, we would wind up in our tents by 8:30 PM.

I was usually the first one to wake up around 5 AM every morning. Daylight would break around 4:45 AM and the kitchen tent would be buzzing with activity, with getting breakfast prepared and served by 7 AM, packing and winding up by 8 AM. Oftentimes lunch would also be cooked in the morning so that we could pause somewhere and eat a hot meal when the days were long on foot. The meals were a lavish, royal spread where every person’s dietary needs were met and there was such attention to detail, including what the kids in the group would like, which ended up being had by all the adults as well. Such was the meticulous planning of the Boots and Crampons team.

Chalo ji. Ab ghar nayi jagah basaaye,” (Let’s move, and make our home at another location) said Naresh, our guide, as the staff packed tents and the kitchen up, and loaded the ponies with our luggage, and the camping paraphernalia. I was standing with him and reflected on how it actually was a home that we were dismantling and setting up elsewhere. A 5-bedroom home, with a dining room, an open-air living room, two toilets, and a kitchen. It was just what is needed to sustain and actually have a good time. What more do we really need? And yet, we end up cramming our homes, getting attached to material things, when we could live comfortably with less. Yet another lesson.

The scramble on all fours

Day 2 soon saw a climb on all fours literally, up a hill, on a mud trail with slippery rocks and pebbles, with such a steep gradient that I decided that I would be the last one to go up. I didn’t want to hold the others behind me. I struggled initially and wanted guidance to navigate the path without falling. But everyone was out of ear shot from me.

When you are alone, and you know you have nobody to fall back on, you decide to summon up your own courage and get down to doing what you have set your mind to. I heard Chetan shout out, “Just follow the foot tracks,” but I couldn’t even see them marked clearly. And so I tried my best, walked partly on uncharted territory, and reached the top because I had set my mind to it.

The eight of us sat in a line and gazed at the mountains in silence, interspersed with smatterings of conversations. We were all awe-struck to say the least.

The group of us

I chose to mostly stay at the end of the pack. I was in no rush to reach the end-of-the-day campsite and wanted to take in the 360 degree view of the mountains in addition to being with my own thoughts, and the calm that also flowed in between. I had some reflections on life that were begging some attention and I needed to square them away. Being by myself, in this amazing landscape with no other human (other than my small group of trekkers), and with sounds of nature such as the whistling winds, the pitter patter of the rain on my jacket, the gushing rivers, or an occasional call of the marmot or a lone bird, I was sure the mind would be put to ease.

Reflections.

Not everyone is comfortable with silences and with looking deep within. You just never know what comes up, and it gets overbearing, and you want to run and hide. I like braving the storm and was keen on coming back with answers at journey’s end. I have found the best insights in the lap of nature, surrounded by silence, and in gazing at the star-studded sky at night.

Day 3 saw us climbing a mountain pass at an altitude of 4965 metres (16,300 feet). Objects in the distance seem closer than they actually are, is what I concluded from when I saw Matho La from the camp site and when we actually reached the pass at the end.

When you set your sight on a goal, you persist, scramble, crawl, struggle even, till you get there. Isn’t life similar? You just never know what keeps coming up, how long the road ahead is, what obstacles come in the way, but you keep walking, you keep your eyes on your goal, and you finally feel triumphant at having accomplished it, against all odds. You emerge stronger, more resilient, more seasoned, after having weathered many a storm.

On top of Shang La (16,200 feet)

Such was the experience as we climbed two mountain passes in two days. The mind was interestingly quiet because even if it was screaming “I want to quit this treacherous trek,” uhhh, where would you go? There was no easy exit so it just naturally ploughed along towards the finish. Which goes to show how much we fall victims to the tantrums of the mind. If we can learn to see it merely as chatter that is coming by to just wreak some havoc, and instead focus on what we are striving for—our goal, we will be in such a happier, more content space. I speak from experience :)

I developed a method when traversing the mountains so that I could manage it with ease, without tiring myself, and with the singular focus of having a good time: A fixed number of steps and then a pause for 15 breaths when there is an altitude gain was my mantra. I got to appreciate the vastness of the valley around me, the blue skies, the soaring eagle, the distant yaks, and sheep grazing, and a celebration of how far I had come. And just like that, with this pathway chalked out in front of me, and a belief in my abilities, I reached the mountain passes.

As the reflections and the introspections continued, the revelation emerged that what I had just experienced in the mountains, in the midst of the challenges that life was throwing at me lately, was the power of hope, a topic that I have researched on in the aftermath of a spinal cord injury or an illness. Hope is a cognitive construct that involves three things: A goal, a sense of personal agency or a belief in yourself that you can achieve that goal, and the pathways you chart out to get there. When you see hope as a silver lining, the clouds of despair and self-doubt make way for a better tomorrow. Clarity was beginning to sink in on how I needed to navigate life to bounce back stronger. Hope is such an energizer.

Enough about me…

Moose and King

How can I come this far into my blog and not write about Moose, who stole my heart from the minute I cast my eyes on him at the start point? He started with us and I asked Naresh how far would he go, remember? “Sometimes they finish the entire trek,” he said. And so, Moose, and King, a salt and pepper companion to Moose, set off with us.

The first time our hearts were in our mouths was when we crossed that first gushing rapid and Moose was trying to figure out how he could find his way to us. He paused, looked around, paused some more, and jumped across, only to have his front paws barely grasping the edge of the other side of the riverbed. Stuck amidst a heavy thicket of bushes, he finally clambered on amidst shouts of “Yay” and applause from all of us. We stayed together through thick and thin from then on. He silently waited to be given food served to him on flat boulders wherever we could find them, and whatever we ate, was shared with Moose and King.

They would either be the leaders of the group or one of them would be behind, making sure the last person was in. They paused where we paused, often waiting patiently for all of us to assemble at the predetermined meeting point. Moose and King were not the kinds who would huddle with the humans. They had a sense of detachment, but in their quiet ways they looked out for us. Or we felt that they had our backs. That was enough.

They would sit outside our tents, guarding us as was evident with their lone barks in the dead of the night. One particularly rainy night I tried to get Moose inside the tent but he refused to enter, choosing instead to continue his self-appointed guard duties. I became the food provider, feeding them every meal, and taking care of them in my own way, and I knew I was soon heading for a heartbreak. But I am not the one to ever stop in my tracks for fear of that. When you love, you love fiercely, and that’s all I have known. The love story continued.

My puppy :)

“He's such a puppy,” we all would exclaim. Till one day, on our acclimatization walk, we saw him run surefootedly up two mountains, in an excited pursuit of some blue sheep. This was within a few minutes, where all of us were frozen in our tracks, seeing our Moose transform into Eliud Kipchoge, except going vertically. We sighted a snow leopard from afar, which is why the sheep were running for their life, only to realize that Moose was coming the other way to chase them some more. Our Moose was a hunter after all, but for me, he was still a puppy.

What being let in feels like

Moose was initially a bit jumpy, fearful of being too close, lest someone hits him. But soon enough, as trust was built, he would allow me to pet him, wipe him down when he got wet in the rain, or to just snuggle him in a warm embrace. Contact comfort was healing me for sure, while Moose was always his Zen self. King had taken his own independent path on Day 3, where we saw him vanish into the direction of Matho village. He was King, after all, the Master of his own destiny.

The nights were getting colder as we gained a steady ascent, and we sipped on a steaming mug of hot chocolate on reaching the campsite. There was a camaraderie and an ease as strangers became friends who were on their own individual journey to seek something on this trek: adventure, pushing limits, fun, solitude, companionship, answers to life, dealing with an existential crisis, basking in silence, nature, tapping into their potential, rekindling relationships, forming new friendships, digital detox, or whatever else it could be.

The river crossings came and went, with ease this time, the ascents and descents were tackled with love and patience, pain was taken along as a companion and also a testimony of the arduous journey we had undertaken, life was lived well without being connected with the rest of the world, and without the doom scrolling of social media, work emails, messages or whatever else we felt was indispensable earlier, and was important to numb ourselves with. Nature in all its glory had taken over, and caused a shift within, luring us to explore more, to climb more, to take on another new challenge, to dig deep within, and in the end asking us if we wanted more, were we thirsty for more.

While I had found answers to what I was seeking on the trek, I knew the one lesson that I needed to learn was on heartbreak and detachment. And it expectedly came in the form of a tearful goodbye to Moose when we reached the end point of our trek.

Till we meet again, Moose

I hugged him and thanked him for being with us on this remarkable journey, for taking care of us, for braving the elements of nature for us, for giving us so much joy and comfort. I was reassured by the leader of the group of ponies that Moose would end up walking with them to Choglamsar where he would find his way to Stok village.

“I hope he doesn’t follow us.”
“I hope he isn’t distressed at our departure.”

I kept hearing myself say this. I hoped he would maintain his detached stance that he had displayed so magnificently throughout the trek.

I was wrong.

I was the first to sit in the bus. I couldn’t bear to look behind and see what would unfold when the bus started moving but I was prepared for whatever would happen.

Moose came sprinting behind as the bus started moving. I couldn’t look because I was shedding silent tears. I am unabashed in expressing my emotions that way. The bus slowed down to maneuver a big crater in the road and Moose thought that we were stopping for him, and he paused in his tracks, only to see us disappear from his sight. There were words of anguish spoken, and some of us wept in silence at the sense of abandonment we were all feeling so acutely. So deep was the love between a gentle animal we had met a few days ago and us, who only communicated with his eyes, who loved us too as evidenced by his trust in us, letting us into his world.

How could I deal with this love, heartbreak, and detachment? By wishing him well. By finding solace in the fact that he would be able to take care of himself, like he had done all along. By reminding myself that even if I took him with me to the city, I would be robbing him off his freedom to be a part of these mountains, his true home. By expressing gratitude for all that he brought to us. By reminding myself that not all love needs to be taken into possession. You love with your heart, even from a distance, and then you part ways. By tucking away in a corner of our heart, of all that he taught us by showing us a mirror. Of having us face our own vulnerabilities, by turning our weaknesses to strengths.

Isn’t everything transient and temporary? Aren’t we just fellow travelers who cross paths, enrich lives in that moment, and walk our own way? Aren’t we all going to face the loss of someone we love(d)? Answers to these questions made my heart stronger.

I thought of Moose every day for the rest of my trip, hoping he was OK. Hope kept me going, not anxiety or worry, not the “what if” questions, not to question the “why” we had to part ways. It was inevitable, it is the way of life.

It wasn’t just reaching the top of the mountain passes that was exhilarating. It wasn’t about conquering the mountains and feeling like we had accomplished something that brought the adrenaline high. It was every bit of the high and low, every bit of the climb and the crossing, every revelation, every insight, every moment of pain and fatigue and still walking ahead; every bit of that heartache in the end, the friendships and the separations, of love and longing, of moving forward despite the trials, of celebrating life in all its glory. 

Ladakh, my love story with you, will continue.  

PS: Thank you so much for being the most fabulous team to be with: Chetan, Naresh, Shalini, Rajat, Amaan, Aanya, & Etaash :) Picture credits go to the entire team.

Every Life Tells A Story

I had written this story on July 18th, 2018. A lot has changed in these 14 months, but yesterday a phone call from a friend whose mother is truly suffering because of a terminal illness made me pause and reflect again.

“Divya, I want to know how you do this.”
“This what?” I asked gently
"The ‘end of life’ discussions with families, and especially the one you had with your own parents.”

And so the story goes…


Hi Doctor, I wanted to speak to you about my father if you have a minute.”

And in walked Rohit (name changed), conversations with whom led me to assess my own beliefs and practices about medicine and what we as professionals, from surgeons to nurses to those in allied health, work towards.

I had just returned from a 6-month stay in the US and Rohit’s Dad had been in the hospital for 3 months, in intensive care for the most of it. A man in his mid-80s, a fall in the bathroom had led to a C3-C4 level spinal cord injury. He could not move below his neck, and a tracheostomy (down his throat to help clear the chest congestion through a whirring suction machine every few hours thus helping him breathe) made any spoken communication impossible.

“He’s been refusing to come to the Rehabilitation department for his physical and occupational therapy, and is also refusing to eat,” Rohit informed me.

I started gathering more information on Uncle, his medical condition, who the primary caregiver was—in this case, his wife of 53 years. I learnt about his sense of autonomy before the accident, his stance towards illness and health, and that he had been working up until his injury, as a Consultant and also as a tutor to his grandkids.

Uncle’s response to any sort of conversation was minimal. The inability to utter a spoken word made counseling difficult. Even when the psychologist asked him basic questions, his responses were what we psychologists would call “socially desirable.”

“Are you sleeping well?” “Yes,” he would nod.
“Eating well?” “Yes.”
“Are you feeling any sadness?” “No.”

This is what my colleague reported on her attempts to communicate with him. I sensed something more was up in Uncle’s unwillingness to communicate. We decided I would give it a go as well.

I had seen Uncle in the department engaging in his physiotherapy and had seen a distant, vacant, and lost look in his eyes. That look said more to me than any word he could have managed to utter. I spoke to his physical and occupational therapists to know how Uncle was doing.

“He was putting in the effort initially, but lately he just doesn’t engage actively. Earlier he would respond to our ‘Namaste’ but now we get nothing.”

“What goals are we working towards?” I asked pointedly. “What do we see Uncle doing at the end of his rehabilitation?”

At best he could sit for longer periods in the wheelchair. It was too soon to even tell if he would be able to eat on his own, let alone read the newspaper, or write, both of which were valued activities for him.

And how would he exert his fierce sense of independence? How would Uncle script his story hereon? These were answers that only he could give me.

I walked into his room and saw Uncle lying in the bed with his eyes closed, his face turned to one side.

“Hello Uncle. I’m Divya, and we have met briefly before, while you were doing your therapy.”

He opened his eyes but continued to look away.

“I’m here to listen to you today, Uncle. I know many people have given you advice on how to stay strong, and be motivated, and keep fighting. I’m not going to say anything of that sort. I’m here to listen to what you have to say.” He turned and looked to me, and that lost, resigned look pierced through my heart.

I reached out and touched his frail, wrinkled hand, a cannula sticking out of it which fed him his medicines.

“You’re as old as my Dad, Uncle. If this were him, I would want to listen to him too. I would want to know what he wants to do, what makes him happy, what makes him pensive. I would want to know how he would want to script his story from now on. Please talk to me, Uncle. I want to know what is going through your mind.”

I saw tears trickle down his eyes, as he looked on helplessly at the oxygen cylinder next to him, his other hand resting on his side, refusing to respond to any command that he would make, and as he looked into my eyes, imploring, I found myself choking up as well.

In an earlier conversation, Rohit had mentioned how Uncle had been asking the family to take him home, how he felt he was being a burden on everyone. His wife was in significant pain due to severely arthritic knees and was due for a Total Knee Replacement (TKR) when Uncle had his accident. Rohit had a stressful job which often involved night shifts, but he would unfailingly be by Uncle’s bedside first thing in the morning. Extended family members who themselves were in their 70s came in to help. Uncle saw all this support but saw no improvement in his physical status.

I continued to hold Uncle’s hand in silence, trying to see if he would be willing to let me through those well-guarded walls. I couldn’t tell if his silence was an act of defiance.

From his point of view, no one was listening to him and were subjecting him to one thing after another. Medical interventions for his infections, feeding, clearing his chest of congestions, two hourly turning in bed, to catheterization to empty his bladder, and the arduous task of engaging in rehabilitation.

“This, Divya, I can control. This at least. Where I don’t talk to you.”

Or was it sheer hopelessness where he knew nothing was improving his condition? Had he reconciled himself to the fact that the efforts of his family and the team of professionals to try and make things better might not improve anything?

“Better.” “Improvement.” What were we looking at in terms of it translating into Uncle’s life? As far as I knew, all that he valued in terms of bringing meaning to his life was lost. So what were we all working towards?

What do you say to someone whose eyes speak volumes but who can’t express it in spoken word? I ran the risk of saying something that could stir up a cauldron of emotions without getting to the root of it, and also the risk of giving up too soon. The medium of my intervention – communication and responsive interaction – was compromised. I persisted, and waited to see how he emoted to every word I spoke.

I spoke about the expected disruption in mood after a severe incident like a spinal cord injury. How it affects not only the person but the whole family, but how a supportive, cohesive family itself is one of the biggest determinants of a successful rehabilitation outcome. And how I know he had that on his side.

A fresh tear welled up. I continued about how common it is to feel like a burden on them, but how it would be best to see it as a blessing.

“Because, Uncle, wouldn’t you be there for them if they needed you?”

He nodded.

We spoke about small the steps of progress he had taken since the time of his admission and how it was possible because of his own effort in therapy. How the therapists were working towards increasing his muscle power so that he could use assistive devices at least to regain a certain level of functionality, though the high level injury made that possibility quite remote. He looked on, continuing to make eye contact.

He was listening. I couldn’t ask him open ended questions because of his inability to speak, but anything to get closer to what he was feeling is what I chose to tread the path of.

“So, Uncle, tell me, do you think we could give it one more shot at active participation in therapy? We just need your best effort and then let’s see where this goes?”

He nodded. I couldn’t offer him false hope because I myself didn’t know how he would progress in therapy and whether he would be able to make any gains towards modified independence, but we had to see how he worked this through.

“Would you like to go home, Uncle?” I needed to be sure I wasn’t missing his intent. He shook his head.

“And you’ll eat your meals?” He smiled and nodded.

The next thing I know was that Uncle asked to go to the rehab department to resume his therapy. He started eating again, and yet, something in me told me that this achievement was temporary. And I would later be proved right.

Regardless, I would meet him every day, just to say hello, to hold his hand, to tell him I was there to listen to him, to do as he told me. I was there, because that’s the best I could do in that circumstance. No empty words of reassurance, no “pep talks,” just being there, telling him I understood that the journey wasn’t easy. I’ve learnt over time that sometimes all it takes for it to become better, is that someone understands, and shares the joys and the sorrows.

He started telling me when he was “not good,” when he was “fine,” and I knew he was feeling his brightest when he would smile and ask me how I was doing. Visiting him every day became the best part of my morning, because it almost felt like he looked forward to it as much as I did. His smile would say it all.

Uncle kept vacillating between hope and despair. I would see him cringe each time the care attendants would shift him to the wheelchair and back. Or when the suction tube was shoved down his throat, or when Aunty would stand next to him, masking her pain, to carefully put a spoonful of food in his mouth, because he just would not let anyone else feed him. And just like that, for that same family, Uncle wanted to get better, because that is what they wanted for him.

He fought through the disorientation and weakness brought on by hyponatremia (low sodium levels commonly found in the elderly), the oxygen desaturation that often ran the risk of leading to hypoxia, and being on constant oxygen support. Fight he did, till one day…


I could barely focus on delivering my presentation because I was waiting for that one call from home. Finally, as my colleague and I walked to have our morning cup of coffee after my talk at the internal meeting, my phone rang. “So, Mom’s reports are out and she has a moderate restrictive ventilatory defect. Her 6-minute walk test showed that her oxygen saturation falls to 86% on walking.” I turned myself away into a corner and cried shamelessly while being on the phone with him. I felt incapacitated and helpless in that very moment. What will this mean for Mom? For us? What next? My mind was a blur as I struggled to bring myself back to the present moment of being at work, and for the patients I had to see.

You always think your parents are invincible. You think they will always be there, until one day you are confronted with the harsh reality of their mortality, and you just don’t know how to react.

I found myself being over-protective, over-bearing, over-everything as we attempted to get accustomed to this “new normal.” The doctor advised us to keep Mom away from any forms of dust and pollutants, dogs, plants, and cooking. This was going to be a challenge. Mom always had a green thumb and loved gardening, and our 13-year-old Labrador, Jopu, has slept in their room since he was brought into our home.

“Mom, did you do your spirometer exercises?”

“We’ll take Jopu to our room and he can sleep there.”

“Did you eat your medicines?”

“Did you wear your mask before you stepped out of the home?”

“Did you do this… Did you do that… Mom, take care of this…Mom don’t do that.”

And poor Mom, was caught between a rock and a hard place…between her own wishes of leading a life she wanted to, on her own terms, and what we wanted for her…her safety, her presence, and a longer, healthy life for her.

The next morning, Jopu (who had spent the night in our room) and she were both miserable when they were reunited, and this was the beginning of my realization that I would soon be rethinking how we approached health and aging.


One day not long after, I was on my usual round to see Uncle, and I noticed a flurry of activity in the ward. Uncle was being shifted to the High Dependency Unit because he was having difficulty breathing and needed to be put on a ventilator.

That vacant look had returned. It soon turned into completely shut eyes as he barred us all from his world. No one could reach him again, not even his family, nor the doctor in charge. This was it. He wanted no more of this poking, prodding, scans, x-rays, tubes being inserted through his mouth and nose, no more prolonging his life when he couldn’t live it the way he wanted to, with dignity.

As I think back, I never really saw fear in Uncle’s eyes. Fear of death or dying every time his breath was raspy, or not enough oxygen was reaching him; or fear of what the future had in store. There was always this determined look, one that said, “Let me go.” But we all held on. And I wondered why. Whose was that call to take?


At home, we were getting better at managing Mom’s new healthcare needs. Dad was taking care of the medical prescriptions and I was focusing on ensuring that she was engaging in the activities that have brought meaning and purpose to her life. She loved taking care of the neighborhood we live in, enjoyed meeting people, and had her band of friends she would meet at least once in two weeks. She wanted to continue being active despite her illness.

There is a mental calibration needed when you realize that the body isn’t keeping up with what the mind wants to do, and Mom was finding her balance with just that. She was used to walking fast, but the pulse oximeter would start shrieking, telling her that her oxygen was falling below normal levels and she needed to slow down. With the help of a portable oxygenator, we started going out. On the days I was home, she and I went out for lunches, or to her office next door, or her hospital visits as we trialed and errored our way to figuring out the optimum setting of the oxygen supply on the machine.

I started pondering on what path lay ahead of us.


In his brilliantly insightful and compelling book, “Being Mortal,” Atul Gawande talks about how human beings find life meaningful because they craft it like a story. The story has a sense of a whole, and its arc is determined by the significant moments, where something happens. And in stories, endings matter. And as we age, or as disability threatens our very meaning of life and living, the ending may be confined by narrower options. Yet, we have the chance to shape our story by focusing on what is essential to sustaining meaning and purpose in life, rather than merely prolonging life.



Rohit and I found ourselves increasingly talking about what the next steps should be for Uncle. It had been seven months in the hospital, and Uncle was now at his defiant best.

“He’s saying something to us through his defiance,” I told Rohit, “and instead of just focusing on the medical interventions, talk to him before it’s too late. Ask him what he wants to do, what is important to him, and how he imagines the time hereon. Come together as a family to help Uncle shape his story without imposing what you want for him.” And Rohit set out to do just that.

Uncle wanted to go home, to be with his grandkids, to sit in his lounging chair, to have single malt with his sons, to see Aunty pain-free, to feel the taste of home-cooked food, to not have tubes running through his body, to not be subjected to another MRI, another blood test, another procedure.

“But in case there was an emergency, there may not be enough time to bring him to the hospital,” was the family’s concern. And Uncle’s directive was simple: “Let me go. I’ve lived my life well. No more suffering.”

He had laid out his story’s ending.


It just so happened that today Mom, Dad, and I were discussing the condition of J. Uncle, one of Dad’s friend who was on a ventilator in a hospital for three months, battling septicemia, with one organ after another shutting down. And we spoke about when to stop all efforts, how the hopes of the family for a miracle cure kept the life support going, J. Uncle’s suffering, and what he would have liked to do if he was conscious to take a decision.

With a steely resolve I told Mom and Dad that conversations like these are important to know what the family can do to respect their loved one’s wishes towards their own treatment, even if it is not in agreement with how we perceive their story to be. This is the rethinking I had come to as I faced questions on mortality around me. Mom started laying out her wishes. As I heard her, I made a mental note of what she was saying to us, and saw how those wishes were based on her strong sense of self, her independence, and her wanting to be active and in charge till the end.

No one really knows how their stories will end, but knowing that there is a basic road map drawn from the life led, a map based on the meanings ascribed to that life, the purpose they have, the goals they want to pursue, how one defines well-being and a life of quality, and the trade offs they are willing to make to achieve that sense of self, that itself is a good beginning of an inevitable end.


Today is September 18th, 2019. Mom passed away on December 26th, 2018, on her own terms. We respected her wish of not being on a ventilator to prolong her life when we knew her body was failing her. The breath we take for granted was being fought for by her, and the heart that lets us know we are alive, and well, and have a purpose to our existence, failed her. There was no hope even for the optimist in me, for the one who believed we should not give up till the end. But the end was here. The family along with the doctors decided to wean her off the ventilator after 36 hours when we knew her organs weren’t supporting her. I did not leave her bedside when they started weaning her off because I knew Mom wanted her loved ones by her side, and as far as I was concerned, I was her poonch (tail) from childhood till her last day. For four hours we chanted the Mahamritunjay Mantra as I worked her rosary in one hand, while the other held hers. “Go gently, Mom. I love you,” is what I continued to whisper in her ear, not knowing whether she heard me or not but I believe the sense of hearing is the last one that leaves the body. So she must have. She went on her own terms, just the way she wanted.

The conversations around end of life may have been heartbreaking but they helped me acknowledge her wishes on how she chose to go, with dignity.

December 2nd, 2018, on our last vacation together. Mom got to soak in the sun, knit away to her heart’s content, spent time with us chatting about life & the mundane, and got to visit the school she started for underprivileged kids in the early …

December 2nd, 2018, on our last vacation together. Mom got to soak in the sun, knit away to her heart’s content, spent time with us chatting about life & the mundane, and got to visit the school she started for underprivileged kids in the early 1990s.