memories

Stories of Saagar and others like him

Walking home.

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Every time we visited him in the Intensive Care Unit, he mouthed the line “Just take me home.”

We wanted the same. It was our prayer in every moment that we would be able to take him home. But how would we transport the things that were attached to him? The things on which his life depended – monitors, strong medications being infused through syringe pumps and the beeping robot that was supporting his lungs? Even if we transported those, who would man these gadgets and modulate them as required? The first step was to get him to breathe by himself. It was happening in bursts. Some days he looked so bright that it was easy to believe that it wouldn’t be too long before we could. Other times he seemed tired, simply from the effort of breathing. Of course, they were trying to help him come off the ventilator but sometimes it was too much for him. Despite their good intentions and gentle demeanour, it was too much for him.

One of the young residents encouragingly said, “Sir, we want to send you home soon. That’s why we’re making you work hard.” He pointed skywards with a wry smile, “That way?”

In the end, it was a long, slow goodbye.

“We’re all walking each other home.”

– Ram Dass.

Thirteen weeks

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Date of admission: 2nd Sept 2022 (Friday)

Date of Surgery:     5th September 2022 (Monday)

Date of demise:      2nd December 2022 (Friday)

Length of hospital stay: 13 weeks (91 days)

82 years old gentleman with no significant medical history was admitted for an elective Anterior Decompression of Cervical Canal Stenosis. He wanted to regain his confidence in walking and return to playing golf. He was not on any regular medications. He was not overweight, diabetic or hypertensive. He had no history of heart or lung disease. He lived independently with his wife in their flat on the second floor of a building that had no lift. He went out at least once or twice every day without much difficulty. He was an ardent and proficient bridge player. He drove his car to a friend’s birthday party one week before he was admitted to hospital.

He underwent an uneventful surgery but afterwards he lost power in all his limbs. They took him back to re-operate and make more space for the spinal cord that had swollen up, according to the MRI. That didn’t make any difference. His lungs were unable to work properly as the muscles of his diaphragm became weak. The domes of the diaphragm separate the chest from the abdomen. They play an important part in effective breathing and coughing.  Yes, surprisingly, the nerves to the diaphragm, originate from the neck (C3,4,5). They stopped conducting electricity. His lungs became unsupported.

His doctors said he’ll get better. It was just a matter of time. We needed to be patient. He needed help with his breathing so his windpipe was hooked on to a machine with numbers and waves and graphs and bleeps. He could not speak. No air came through his vocal cords.

Over the next few weeks he regained the sharpness of his mind and found that he was unable to breathe or speak, move or eat, turn from side to side in bed or have any control over his environment. He couldn’t really tell if it was day or night. The machines in the ICU made mad beeping sounds throughout the day and night and no one cared.

Patience wasn’t one of his best qualities but he was patient. Over the next few weeks he regained some strength in his forearms, enough to wave us hello and bye. Enough to blow us kisses and indicate that he was enjoying the music we were playing for him. Enough to bring his hand up to my ears and mouth the words “Nice ear-rings.” He learnt to communicate through his lip and arm movements. He said thanks to everyone who came to see him. He also said, “I love you” more than ever before. He smiled a lot despite his predicament.

His younger son is a writer and a storyteller. He told him a story of two well-known writers of modest means who visited a super-rich investment banker about something. In conversation the banker said he had great wealth, what did these two measly writers have? One of the writers said, we have something you will never have. “Really. What might that be?” He asked with a smirk.

“We have enough.”

After a moment, this patient father on Bed number 19 formed these words with his smiling lips, “I have enough.”

His lungs got infected five times in three months and the morale of his family went up and down like a yo-yo with him. No one knew what would happen next. In between, there were good times – going for a spin on a wheel chair, bowing to the statue of Buddha down the corridor, having bits of tomato-ketchup-flavoured-pringles with tiny sips of Coke, watching sparrows on frangipani trees. But this was not his chosen way of life. He had had enough. His heart had had enough. It stopped. The time to say good-bye left his doctors and nurses in tears too.

Ninety-one days of pure love and deep suffering. The former remains while the latter is done.

May there be peace for all beings everywhere.

“What will survive of us is love.” – Philip Larkin.

Varanasi

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This ancient city of learning and burning sits on the banks of the river Ganga which is home to Saagar’s ashes. We were here twice, within a few months of Saagar’s passing for various ceremonies related with the sudden and tragic nature of his death. A year ago, my Irish medium who I have come to rely on, informed me that the elaborate prayer services that were held for him here had been greatly helpful in freeing his soul. I have no reason to not believe her as everything else she tells me makes sense.

Last month I was back in this iconic city for a long weekend, celebrating the writings of my favourite 15th century poet and philosopher, Saint Kabir.

“Scholars are never made 

from reading countless books.

You only need to understand ‘love’

to be a true scholar.”

Twenty three years ago I left India as a motivated young professional thirsty for knowledge, professional growth and ‘success’. I was a naive kid. I did not know who I was. Now it feels like I’ve taken a tortuous and torturous route to finally come back home, to myself.

Yes, I passed many exams. In the year 2000, I traveled to Dublin for the day, for my first post-graduate exam at the Royal College. As soon as I returned home, Saagar, who was six at that time asked me, “Mamma, did you win?” A huge smile descended on my face and my entire being. I forgot about the stress of that day and the preceding months and got lost in our cuddles and giggles.

I did grow in my work and was ‘successful’ but the most important lesson I am learning is to understand, experience and be love.

The only lesson that is worth learning.

For no reason at all.

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Andretta is a small village in the foothills of the Himalayas. It has been calling to us for the past five years. We’ve been working towards becoming able to take it up on its invitation and finally, we are here.

I return to my country, a stranger. I am not that young lady who left and this land is different from what it was when she left twenty-three years ago. It is noisier, busier and dirtier. People and houses everywhere. The national highways used to run through wide expanses of green and yellow fields but now they are lined with messy shops, workshops and warehouses. Overweight people used to be a rarity but now obesity is commonplace, even in kids and village folk. The forests are thinner and the weather full of surprises. The number of extreme rain events has risen three-fold since the beginning of the last century, possibly due to a warmer Arabian Sea.

It was in the last century that I ventured abroad. The dreams that lived in my eyes then, are a mere story now. Those dreams had to be dashed, so I could wake up. My heart had to be shattered before it could learn to be full. I had to be completely humiliated, before I could be truly humble.

Maybe it was necessary.

Fifty-four days ago, my father walked into a hospital for an operation that he believed would improve his quality of life. He has been unable to leave his hospital bed since. Every time I turn from one side to another in my sleep, I am aware that my father can’t do that. He needs help with nearly every activity of life. He’s aware of his predicament and we all are helpless. This helplessness is an old friend from a few years back. Looking back, it might have been better if he’d not had the operation but we don’t know for sure and it’s too late now. It could be worse. I could be better. It could be different.

I wonder why things happen as and when they do? Is this a question worth asking or is it completely pointless? Some questions are unanswerable no matter how frantically the logical mind looks for answers. There are none.

This is how it is. For no reason at all.

Long shadows

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A few months after Day 0, at a SOBS (Survivors of Bereavement by Suicide) meeting at the All Saints near Euston, I met a father who said, “Eight years” when I asked him how long it had been since his son died. I looked at his face as if he was the most spectacular and wondrous impossibility of the world. Is it possible to live as long as that after the death of a child? He was proof. It was. I had never seen anyone who had been bereaved that long, standing and smiling and speaking sense.

Last Monday I joined the 3 dads on the last leg of their long walk to Westminster alongside many people who want the government to add suicide awareness and helpful resources to the school curriculum. We walked and talked in the rain. I said ‘Nearly eight years’ in response to how long has it been since my son passed. I got the same look from a young mum recently bereaved. She stopped and looked into my eyes through the thick rain drops. Past and future, face to face. “Gosh! Does it get any easier?” she asked. It does, I replied, holding her hands.

All these years I have tried to keep Saagar alive in every way I could – writing, public speaking, teaching Youth Mental Health First Aid courses, advocating for young people, working with various people, charities, NHS, Churchill Trust and other organisations, making films and so on.

I have read other people’s accounts of loss, hoping to lessen my pain and deepen my understanding. The latest book I read was ‘The Year of Magical Thinking’ by Joan Didion. She says:

“I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us.

I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.

Let them become the photograph on the table.

Let them become the name on the Trust accounts.

Let go of them in the water.

Knowing this does not make it easier to let go of him in the water.”

Eight years! No time at all.

“Time is the school in which we learn.

Time is the fire in which we burn.”

  • Delmore Schwartz.

Where I live.

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One or two years after Saagar, continuing to live here, in this house was painful. Everything screamed his name – the road from the station to our house that he did not take, our vet, our cat, our dentist, our GP Surgery and pharmacy, our local shops and cafés, our bins, his school, our neighbours, our radio and TV. Everything yelled out his absence.

The thought of moving away filled me with a terrible sense that I would be leaving him behind.  As long as I lived here, this would be his home. What if, one day he was to return? I should be here to receive him. I ironed his full-sleeved light brown t-shirt, a set of dark blue Super-dry sports trousers and kept them ready for use. His Vans shoes too, for that same reason. The boring, practical, Virgo, me. I couldn’t have gone anywhere.

Nearly eight years on, I have come to inhabit my body in a way that my home is where I am. I am comfortable here. Now he’s not separate from me. His home is inside my body once again. He lives in me as love. Divine love. It’s not possible for me to leave him behind ever. He goes everywhere with me, as my beating heart, my smile and my tears. We both share a home. His light shines through my eyes and his laughter rings through my chuckles. I can’t be without him no matter where I am. There is no insecurity. I am free and so is he.

Twenty-two years ago, I traveled from New Delhi to London with my eyes full of dreams and a suitcase full of books. Soon, I shall be crossing the oceans in the other direction, heading back with Si, with absolutely nothing to lose.

Bed number 19.

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I never really left. I was always there. At home with my folks. Even when I flew across oceans, a part of me remained at home. The part that refused to leave. The rest of me has been homesick since that day.

The first time I was to leave my Motherland, India, twenty-three years ago, my dad noticed I was close to tears at the airport. He said, “Chin up my dear. Remember who you are and how proud we are of you.”

Two weeks back he had a routine surgery on his neck that has left him unable to breathe adequately for now. He has received all the support he needs in a timely and gentle manner. For a while he was sedated but when he came out of it, the first thing he verbalised on seeing my mum and I was ‘I love you.’

Two days back I left him again. This time in an Intensive Care Unit bed. Bed number 19. I left his doctors, my brothers, my mother and all the extended family in-charge of him and of each other. I left a list of plans, strategies and resources. I left not knowing what happens next. I left as I breathed and meditated and pleaded with the Gods to heal him.

Once again, I see the fragility of human life. I witness people and situations in a constant state of flux, the tide of hope rising and plunging, our uneven shallow breaths and his, our collective helplessness, the tentative stepping forward and standing back, the engagement of distant Healers, the comforting holding and massaging of hands, hours of sitting in air-conditioned rooms and waiting, second-guessing other’s needs, the tender wetting of lips and applying Vaseline, the daily mid-morning updates that set the tone for the day.

Walking purposefully through hospital corridors is something I’ve done a lot of. But this time it’s me who’s walking through them, lost and vacant.

After four weeks, we hope to return home for a longish time. The very thought makes my heart sing. May Mother Nature do its magical, mysterious dance – make things worse and then, make them better again.

Entrances and exits.

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The two little lads were inseparable. Saagar and Rohan. They cycled together all evening after school and kicked a ball about for hours. They had dinner at each other’s houses. They created snowmen and played with snowballs together. They even shared a bath every now and then. Luckily, they lived right next to each other and their parents were friends.

At Ulster Hospital in East Belfast, the staff accommodation is a set of six flats. Rohan‘s family lived in the one just below us. His mum, Shruti, was the best grower of indoor plants. A gentle, sweet lady. She was also a doctor but at that time, was not working. Over time our families became close friends and continued to visit each other even after we moved to London and they moved to the north of England. If you ask me to name my oldest friends in the UK, Shruti’s name would be on top.

Eventually Shruti started working in Psychiatry and seemed to enjoy it, even though the exams were a struggle as they are for many of us, when they must fit somewhere in between work, kids, husbands, homes, pets, friends, sleep and homesickness.

When Saagar was diagnosed with Bipolar disorder, I needed to speak with her. I needed her. I asked her by text what time would suit. She said she’s call me after work and she did.

“Hi Shruti. Thanks so much for calling.”

‘No problem. I am driving so we may get cut off. I’ll call you back if that happens.’

As soon as I started speaking it got cut off and she called back and the same thing happened again. And again. And then she didn’t call back.

When Saagar died, she came to see us the very next day with her husband, utterly shocked.

A month later I needed to connect with her again. She said she’d call me back after work. She called while driving. She had to pick someone up from somewhere or drop someone off somewhere. She was on the move. On – Off – On – Off : our phones connected and then rudely disconnected mid-sentence and stayed disconnected for seven years.

Two days back a message arrived from Shruti on Whatsapp saying, “Please join us and bless the couple.” Rohan gets married soon. A nice little electronic invitation to the reception was posted underneath the message. The invitation wasn’t for anyone in particular. It had no names on it. I can’t be entirely sure it was for us.

I am happy for the family and for Rohan. Wishing them all possible happiness, I RSVP’d with apologies for being unable to attend. There’s nothing here and let’s not pretend there is. I felt sad for a little while at this loss of a valued friendship, but not for long. This is an opportunity to let go. Yet again. If there is one thing I want to be skilled at, it is to keep letting go, remembering what the Bard of Avon said – ‘All the world’s a stage, and all the men and women merely players: they have their exits and their entrances …’ I get it.

“I would like to live

like a river flows

carried by the surprise

of its own unfolding.”                                    

– John O’Donahue

Dis _ _ _ _ tions!

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Sitting at my desk, hoping to create gold on paper (read computer screen). I wonder what’s on radio? A new Urdu poem on Instagram? The angle of the sun getting snazzier by the day. That pile of unopened mail, staring at me. Those people walking by the window, in all-white costumes, singing. Are they drunk? The silencer in that car is not working.

The answer phone, blinking. Oh! That pending phone call to Mum and that long overdue important e-mail. Wonder if it’s cycling weather tomorrow. My hair, so bad from sweating inside the helmet. My stomach’s churning again. I wonder if the orchids need more water in this weather. Maybe I should look it up. No. No. Later. That new film someone recommended on Netflix. That Book at Bedtime – I need to catch up with the first two episodes. A-level results came out today. I hope the majority of the students were not disappointed. Saagar did so well in his A-level exams! Ten years ago.

That picture perfect Expedia cloud, framed in the middle of my window. This breeze, just like the one before the first monsoon shower back home. Wonder if anyone’s reading the report I wrote. Wonder if many patients will make it to the hospital tomorrow for their appointments. What do the train drivers do when they are on strike? I see the point they are trying to make. They believe they’re doing it for us all. Good for them.

The laundry needs sorted and put away. I need to pack for the weekend. A cup of jasmine tea and a piece of chocolate would be perfect. It’s too late to write anything sensible now. So, here’s praying for better luck tomorrow. Good night for now.

No words.

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Two years back, it could not be screened as scheduled. After a long wait, last weekend it was, at Clapham Picture house where Saagar often went with his friends. People came from Leicester, Salford, Cornwall, Cardiff and Birmingham. Some, I had only ever seen on screen. Others, when they were school kids. They brought their sisters, spouses, friends and colleagues. They stayed for hours afterwards, talking about themselves in a way they never had. They fell in love with Saagar’s big brown eyes and mischievous smile. They saw what a treasure had been carelessly lost. Everyone felt something. Many had no words but there was a profusion of overdue hugs all around. Many felt they knew him even though they had never met him. Some introductions were made to link up the leaders from various sectors of society so they could form stronger and safer networks.

That woman in the film was not just me. She spoke for the fifteen families in the UK, who are plunged into this harsh reality every day. More than 6500 every year.

That young man in the film was not just Saagar, but everyone who has ever blamed themselves for their troubles and felt shame for things that have happened to them, hiding behind their beautiful smiles. Unseen. Unheard. Each one who lost their tribe and couldn’t find a way back.

These were not just Saagar’s friends, but all those who are left behind, trying to figure out how this could happen to someone they loved. Wondering what they could have done then and what they can do now.

This film laments a future lost. It mourns silent suffering. It also illuminates a path that appears out of darkness. It also celebrates love and smiles. It also gives us permission to soften, lighten, loosen. It breaks open our hearts so we can hear the unspoken pain that lies behind the mask of another face and our own. It makes us one.

This is what it means to be human. Here, on this beautiful Earth, there is no other. Only us. Not us and ‘them’. Just us.

PS: International film awards: Eight.

‘1000 days’ is made by Me and Thee films for educational purposes. Hence it is not yet freely available on social media. It was screened in the ‘Lived experience’ section at Middlesbrough, for the Hartlepool and Stockton Safeguarding children’s Partnership and South Tees Safeguarding Children’s Partnership Conference on the 12th of July. It made a profound impact on roughly 350 attendees, motivating them to make individual and collective change so as to protect young lives and their happiness. Will keep you posted on the opportunities to watch it. Thank you for your love and support. Please do share any constructive ideas/ thoughts you may have for the film in the comments section.