Could I?

She ran around chasing her multiple ‘to-do’ lists the whole time. She managed to tick things off it with fare speed. Yet her chores never ended. She didn’t allow herself the slightest slip-up. She slowed down for nothing or no one. Despite running herself down she kept carrying on. Yet she thought she wasn’t quite hitting the mark. There was so much more to do. She lived so much in the future that she could never see the landscape of her own heart or anyone else’s. She didn’t know that if your own cup is empty, you can’t fill someone else’s.

She thought she had everything under control. She didn’t ask anyone for help or advice. Even if they offered it, she seldom took it. She did her own thing. Deep down she knew that she didn’t know best but had no idea how to admit it. She took herself way too seriously. She bull-dozed her way around the marshland of her life and crushed a poor little soul every now and then. She didn’t know how to apologise even when she was truly sorry.

She took herself off to far-away places as and when she fancied, oblivious of the impact it would have on those left behind. She just wanted to fly high, be happy, be free. She made it look like she had it all figured out when in fact, she was lost. She had no names for her feelings. Somewhere along the way she had learnt that it was ok to be a martyr and a bully and she managed to play both those roles to perfection. She didn’t know that it wasn’t ‘hard work’ but kindness that made a life good.

She had been unfulfilled and ignorant in so many ways for so many years but she had no clue. She was under the impression that she was successful. There was so much that she did not know. But none of it was her fault.

Could I forgive her?

She was the mother of my son before Day 0.

Could I accept her? Even love her? Embrace her? Could I?

Three friends

This is an approximate transcript of a presentation I made at a TCF (The Compassionate Friends) gathering of bereaved parents earlier this month. The topic was “Finding Hope after Catastrophe”. I hope you find it useful in some way.

“Hello. My name is Sangeeta. I am an Anaesthetist by profession and it’s my job to put people to sleep. Thank you TCF, for having me here this evening.

My son is called Saagar Naresh. I could often hear his cackles emanating from his room. I am pretty sure he’s watching cat videos again. He loves to laugh and make other people laugh. He’s as bright as they come, astutely picking up languages, accents and mannerisms of people around him. He would go shopping with his best friend Hugo to Oxford street and they would pretend to be South African tourists all day.

We loved cooking together. It involved chopping of onions. He got tired of his eyes stinging and watering and found a way out – he would wear his swimming goggles whilst chopping onions. It worked brilliantly!

He was an excellent cricketer. A fast bowler to be precise. He also played the drums in a band. He loved to go to the gym. Most of all, he had a heart of gold and even when he was a teenager, he loved cuddles. He spoke French and German fluently and chose to study Arabic from scratch at University as he wanted to challenge himself.

After his second year at Durham University, he came home for the summer holiday and was diagnosed with Bipolar Disorder. He was unable to go back to pursue his studies as his depression started to deepen. We saw a doctor on the 14th of October 2014. He told us that Saagar would have to wait till his medications kicked in, that he was on the right medicines but they would take time to work. On the 16th of October, Saagar ended his own life.

That was like a bomb going off in our lives. Losing him suddenly, out of the blue was our catastrophe.

Finding hope …

The Oxford dictionary defines Hope as “a feeling of expectation and desire for a certain thing to happen”.

For me, Hope is the belief that it is possible that some of the best days in my life are yet to come.

Soon after Saagar passed away, just getting through the day was an achievement. The time ‘yet to come’ was a huge burden. I had nothing left to offer to the world and the one thing I wanted, the world could not offer me. My own mortality stared me squarely in my face and it was strangely seductive.

What was I left with? My logical mind had been turned into an emotional pulp as there was no logic to this. The more I tried to make sense of it, the more I suffered. It was like banging my head against a brick wall. It did not make any sense. Period. Deal with it.

What was I left with?

  1. This moment, right NOW
  2. Me, mySELF.
  3. Nature.

NOW

How deep rooted was my belief that Saagar would always be around? How much did I take that for granted?

What am I taking for granted right now?

My breath.

My parents.

My partner.

My job.

My health.

Let death be your teacher. ‘Right now’ is all I have left. Like a bird trapped in a cage. The door is open but the bird is unable to fly away. The cage is where he/she belongs. In the ‘now’, I could only sit and watch the door, knowing that it was open. I could breathe in, take a pause, breathe out, pause, breathe in and repeat… I could fully acknowledge and feel the dark hollow that was my chest and hear the echoes of my sobs returning from the black hole within. Connecting fully with the present moment was the only way past it. There was no short-cut. No secret escape route. One moment at a time. Now, I am walking upstairs. Now, I am halving cherry tomatoes. Now, I am watching the steam rise from my cup of tea and so on… My refuge lay in this moment, right here. Right now. The future is a story. The past exists in our thoughts. Yet, our mind is in one or the other. What is real is this moment.

I had a patient once who had a black ‘Gratitude’ tattoo on her left forearm in a big bold decorative font. I asked her the story behind it. She said, ”I work with kids with learning disabilities. By the time I’ve brushed my teeth in the morning, I’ve achieved more than they can. So, I am grateful every moment.”

SELF

I was lucky to have so much support at that impossible time. My mum and brother came over from India to be with me. My friends, Saagar’s friends, their parents, my work colleagues. Everyone stood by me with love and compassion but ultimately it was up to me to live with this utter devastation. I was filled with so many questions, so much guilt and grief that I felt like I was drowning. 

It took 2-3 years but slowly I taught myself to be kind to myself. I am still teaching and reminding myself that our everyday reality is made up of stuff that is unthinkable for most people. We live the life that is other’s worst nightmare. Many can’t even imagine what it’s like to be in our shoes. 

So, we need to honour ourselves for carrying on living with as much grace and dignity as possible after having absorbed the impact of such a huge catastrophe. To know that the harsh inner critic will continue to chatter but we need to witness its mumbling, recognise the pointlessness of it and let it go.

We need to have compassion for ourselves. Compassion being not just a gentle kind feeling but small acts of courage. For instance, I used to love dangly ear-rings ‘before’. I would change them every day, to match my clothes. But for 3 years ‘after’ I didn’t change out of the boring old gold studs. One day I decided to change into one of my favourite pair of ear-rings for no particular reason. It was a small shift. It took courage. I cried. But it was an act of kindness towards myself. I needed my own friendship, my own affection. I needed to once again find ways of being at ease with myself. Lord Buddha has said “If your compassion does not include yourself, it is incomplete.”

I am learning that I need to be a ‘compassionate friend’ to myself.

NATURE

That wretched day in the middle of October was cursed but also resplendent with autumn colours. It was a festival of orange, ochre, red, green, yellow and terracotta. These decorative leaves carpeted our street. I stared out of the window watching these leaves gracefully dance their way to the ground. The trees went from being semi-nude to naked. This was the cycle of life. Nature was reminding me and showing me the devastating beauty of life. Cycles upon cycles of change, millions of times over. The impermanence of everything.

Over the next few months, I sat gazing at the Himalayan mountain range, marvelling at its history and all the changes it has undergone. I sat on a beach in Goa, watching the ocean waves change every second. Over time, I started to allow Nature to teach me what I needed to learn and soothe me when I needed to be soothed. I learnt that we humans can carry the utter tyranny of life in one hand while simultaneously carrying the spectacular beauty of it in the other.

I requested everyone to join me in singing this song by ABBA and was delighted by the upward shift of healing energy in the room as everyone sang together. It was a powerfully uplifting evening.

I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail
I believe in angels
Something good in everything I see
I believe in angels
When I know the time is right for me
I’ll cross the stream, I have a dream

I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile
I believe in angels
Something good in everything I see
I believe in angels
When I know the time is right for me
I’ll cross the stream, I have a dream
I’ll cross the stream, I have a dream

I have a dream, a song to sing
To help…”

Emergency Numbers

Earlier this year, at a Medical school in North India I spoke to staff and students about the stigma and ignorance around Mental Health. At the end of the lecture one of the senior faculty members asked me a question, “Is it helpful for people with a mental illness to be a part of a religious community?”

‘Yes’, I said. ‘Most certainly. Just like it is helpful for someone with Diabetes to be part of a religious community. It might also be a good idea for them to see a doctor.’

Earlier that day Si and I had taken a walk around the hospital and found this list of ‘Emergency Numbers’ prominently displayed on a notice board in the medical library for medical students, nursing students, dentists and doctors.

Need I say any more?  

PS: It is important for every student in every educational organisation to have ready access to reliable and knowledgeable resources if they feel the need to discuss their thoughts and feelings or are concerned about a friend.

Mind the Gap

 You are 28.
 Married 4 years. 
 No babies yet?
 Your mum’s bursting with unspoken questions. 
 The answer arrives finally. 
 A perfectly miraculous baby.
 Born to you, so ordinary. 
  
 He’s way beyond your dreams.
 Your life’s now embellished. 
 He’s much loved and cherished.
 First grandson on both sides.
 That smile! Those cackles!
 Those big bright brown eyes!
  
 He can’t wait to grow up.
 As if in a big hurry, 
 He rushes into walking, talking.
 Loving mangoes and chicken curry.
  
 You work hard for your family. 
 That’s the way you’ve learnt to be.
 From the life of your Papa and Mummy. 
  
 He thrives. 
 Multiple moves
 He survives. 
 So many new houses, schools and friends.
 So many new towns, cities and trends. 
 He takes all of them in his stride.
 Builds up a repertoire of languages 
 from far and wide.
  
 He learns to play the drums
 Lovely unfamiliar melodies he hums.
 Spinning red cricket balls on summer afternoons.
 Reveling at night to heavy rock tunes. 
  
 You split your sides 
 with his impressions of accents 
 and caricatures of the brown, the black, 
 the yellow and the white.
  
 Paul Choudhary and Russell Peter.
 He loves their comedy.
 Their lines he recites to perfection
 At every opportunity. 
  
 Two things delight him most – friends and food.
 Stars at GCSEs and A levels come easy. 
 He’s quiet the dude.
  
 Uni takes him away to Durham.
 You miss his laugh, his wit and his hum.
 You find it painful to cook for one.
 And long for his cocktail –
 The old-fashioned rum.
  
 Two years go by.
 You think you are learning to comply.
 The holidays come by.
 Each and every moment you enjoy. 
 One day his closest friend, Hugo calls to say,
 “The guy I’ve known most of my life? 
 Saagar is not that guy.”
  
 The summer soon turns scary.
 You find yourselves in A&E.
 His laughter replaced with 
 Anger and paranoia.
 The Liason Psychiatrist calls it ‘hypomania’. 
  
 He starts him on ‘Olanzepine’.
 Puts him under the Home Treatment Team.
 They keep you well out of the scheme.
 They know what’s best for him. 
  
 Two weeks pass.
 He responds well to the pill. 
 He’s told he has Bipolar Disorder.
 You’re told nothing. Nil. 
  
 As his mood returns to somewhat normal,
 He wants to return to University.
 He is discharged to your GP.
  
 The GP receives a discharge letter.
 With no diagnosis. 
 No mention of signs of getting worse 
 Or better. 
 No list of warning signs.
 No safety plans or designs. 
 He’s just another number to quote. 
 A delivery note. Completed in rote. 
  
 He went back to Uni but just for 2 days.
 His mood slumped.
 He is too quiet. You are stumped. 
 At the next visit to the GP
 You describe his sadness.
 You are weepy.
 Then you hear the wise doc say
 Take more pills, Citalopram and go away.
 In 3 or 4 weeks
 They will start to play.
 Wait.
 Rome was not built in one day. 
  
 “Would you please refer him back to the psychiatrists? You plead.
 “They will do exactly what I am doing.” Says he.
 “This is not the first time I’m treating someone like this.”
 Take this slip please.
 You remember the look on his face.
 It’s now clear
 As if in front of you right here.
 The lines you thought were concern,
 Were fear.
  
 As advised, you go for walks and have a routine.
 Weekly CBT, daily gym, nice food and TV. 
  
 Multiple episodes of ‘Office’ and ‘Friends’
 Didn’t bring about any upward trends.
  
 He is but a hollow shell.
 You don’t know what to do. 
 Who to tell?
  
 This is your NHS.
 It’s honest and good.
 You know it. 
 It’s you. 
 May be waiting is the best thing to do.
 If they say he’ll get better
 It must be true. 
  
 One Thursday afternoon you return from work.
 An A4 sheet lies flat on the fourth step from the door 
 “Sorry. I can’t take this any more.”
  
 The hand writing unmistakable.
 The implications unthinkable.
 A dash upstairs. Screaming his name.
 A call to 999. 
 He’s only a child. A sweet child. 
 And he’s not well. 
 Surely they’ll find him.
 All will be swell. 
  
 Standing bare feet 
 in the middle of the street
 A festival of autumn all around me
 Red, orange, ochre and green. 
 A car pulls up in front of our house.
 Two uniformed men with his
 Keys and wallet … talk about
 Black hair…
 Brown skin …
 Grey hoody with a penguin …
  
 No one said anything about death or suicide
 What was there to hide?
 10 weeks from the first hospital visit.
 2 days from the last GP visit. 
  
 Later you find out they knew.
 But they didn’t tell you.
 And they didn’t know what to do.
 They sent him home with you.
  
 They call it ‘Care in the community’.
 Do we know the difference between 
 Treatment and care?
 If this is your community,
 What a pity!
 These are your colleagues.
 You trust them implicitly.
 With your baby. 
 Like they would have trusted me.
  
 I grieve for his guilt,
 His shame, his self-blame.
 Him. All alone. Forlorn.
 His quiet desperation.
 Separation.
 His terror. His fright.
 Night after night.
 Misunderstood.
 Behind a hood. 
 No one should have to suffer so.
 Nobody.  
  
 “To be or not to be” 
 That comes up for me.
 Time goes round and round pointlessly
 Never too far from complete insanity.
 Oh! The finality.
 I wonder if this is a movie or reality? 
  
 The official investigation says 
 everything was 'thorough and reasonable' 
 despite all the missing bits and 
 complete lack of clarity.
  
 The doctor stands up in Coroner’s court 
 and announces boldly
 “Suicides are not predictable or preventable.”
 I shudder in disbelief. Here stands a lay person.
 The only one who could have helped.
 I marvel at Saagar for staying alive 
 for as long as he did. 
  
 The Coroner sees the gaping holes 
 that swallowed him alive.
 Same old themes.
 Listening to understand.
 Communication. 
 Closing the loop. 
 Meaningful sharing of information.
  
She asked the Service Improvement manager of the distinguished Mental hospital what he would do to make things better.
He said he would discuss it at the next Business meeting and then spewed such jargon that I could have puked all over the floor of that spotless court room.
  
 I meet with other parents of deep loss.
 Story upon story of utter tragedy.
 Avoidable, preventable travesty.
 Immense outrage and consternation.
 Let’s start afresh with compassion. 
  
 They say when something good happens, learn.
 When something bad happens, learn.
 At a random conference, over coffee,
 I shared Saagar’s story 
 with a seasoned doctor of Psychiatry.
 He said plainly 
”This has been happening as far back as my memory ... ”
  
 I read somewhere:
  
 The opposite of love in not hate.
 It’s indifference.
 The opposite of art is not ugliness.
 It’s indifference.
 The opposite of faith is not heresy.
 It’s indifference.
 The opposite of life is not death.
 It’s indifference. 
  
 I questioned everything about me.
 Every decision, every word spoken, unspoken.
 Every move. Every choice.  
 I even questioned our love.
 But I learnt.
 I learnt to write. To speak. 
 I learnt that there is no ‘they’ or ‘thee’
 No ‘you’ and ‘me’.
 There is no other.
 It’s just ‘us’ and ‘we’.
 Saagar was our future. Our own. Our community. 
  
 Despite everything, I’m learning to love me.
  
 Did the others learn anything?
 Did my son, your son die of nothing. For nothing?
  
 No. There is a Saagar shaped hole in my heart.
 There is an Ed shaped hole in the NHS.
 There is a James shaped hole in A&E.
 At least seven thousand and fifty 
 more holes in the world since Saagar. 
 And rising.
 There are too many holes in this net. 
 In fact, there is no net.
 Just gaps.
 So, one and all, Mind the Gaps.
 And let’s please begin
 To close them in.  

[ Please support this film: https://igg.me/at/1000days ]

Me and Thee

Ron and Jeanette

The first time I saw Jeanette, she was acting in a play called ‘Hearing Things’ being staged at South London and Maudsley (SLaM) Hospital, where Saagar received (inadequate) treatment. The play was inspired by events and conversations from real ward rounds of patients with serious mental illnesses. It was written by the playwright often described by critics as the ‘English Chekhov’- Philip Osment, well known for giving a voice to those at the margins of society.

The play highlighted harsh facts through a story sensitively told. Just three actors  illuminated the wide swathes of blurred lines between sanity and insanity, between the healer and the ill, between strength and fragility. I learnt a lot from it. It was a powerful blast that left me thinking about my roles as an ordinary member of society, a doctor, a mother, a patient. It gave me an insight into how and why the system does and does not work. I thought it gave me a little peek into Saagar’s mind.  It certainly made me feel utterly close to him in an unearthly compassionate way.

A few weeks later I arranged to meet with Jeanette. I trusted her even before I knew her. She listened. We talked for a long time. She read the blog. I suggested a documentary. I spoke with some of Saagar’s friends and they wanted to participate. So was Si. We all had something to say. Ron and Jeanette filmed it last year.  

This year we aim to complete it and release it. We have a name – ‘1000 days’. We have found a suitable and brilliant editor. We need to find some platforms to showcase it and we will. We are working on a crowd-funding campaign which will be launched within the next 10 days. The intention is to make this world a kinder and more understanding place. Watch this space.

Many thanks in advance.

Mirror, mirror …

5 feet 5 inches. Average frame. 67 kilos. Completely owns her 52 years. Medium brown skin, a shade darker in a horizontal oval shape around the lips and in half-moons under the eyes.

It used to be thick black and curly but now it’s scant, allowing pale scalp to peep through in places. The blackness now replaced with streaks of silver, grey and pale brown that she wears in a bunch behind her head. The curls are now looser, more manageable. The hairline, less defined.

The oval face bears a forehead with 2 thin but clear, straight horizontal lines running parallel, about 1 centimeter apart, from one side of the face to the other. A baby line is forming on top of these two. Faint but visible on a closer look.

Asymmetrical eye-brows, the left one bearing a scar from a childhood fall. Not bushy, not sleek, not modified. Just plain, normal, slightly curved, unremarkable black brows concaving over dark brown eyes with microscopic gold flecks. The ones she passed on to her son. They are almond shaped and carry a sadness which lingers even when her face breaks into a smile. She didn’t know that her eyes closed when she laughed. A stranger told her once. He’s now her husband.

Her nose is odd. She’s always been embarrassed about it. Too broad. Too big. Strangely no one else seems to think so. Maybe they’re just being polite. Maybe they don’t really care. Maybe its inconsequential.

Her small shapely ears, adorned with traditional diamond studs set in the shape of a flower with 6 petals. Her lips, brownish-purple with a hint of pink where they meet. Her husband says she reminds him of the ancient drawings of apsaras at the caves of Ajanta and Ellora. Her teeth, perfect. Her chin, proud. Her jawline, clean. Her neck and shoulders, silky.

Her loose-fitting, sleeveless olive-green linen tunic has a modest V-neck. It allows her to freely move and breathe. And lets her hide herself. A pair of grey tights cover her legs.

She sits out in the sun in her backyard which is green with grass and weeds. One shrub with big round heads of purple and yellow flowers dominates half the square patch. She trims it every autumn and it comes back bigger and ever-more-loving the following year. Some say it looks untidy but who cares. She loves it.

Her study table is a mess and so are her ward-robes. Only she knows that. Everyone else seems to think she is super organised.

Halfway down her left arm, half a tattoo can be seen from the front. It is blackish-green in colour. It has English letters hanging off a horizontal line, like they do in Hindi script. The font is predictably called Ananda Namaste.  One afternoon in September 2016 in Lagos, Portugal, a skinny middle-aged man with glasses took 45 minutes to make it. He didn’t make small talk. What did this word mean? Why this? Why now? She was relieved. All she knew was that she would never change her mind or heart about this one. She would always love Saagar.

Constantine Bay

The entire coastline covered in Sea Pinks, bunched together in shapes resembling piglets. They could easily be called Sea Pigs. Poor soil – no problem. Lashing winds – no problem. Salt laden air and water – lovely! These little pink flowers are hardy as hell. Unperishable. Their leaves stay green all year round – sun or rain.

A week in Cornwall, the perfect escape from the Big Smoke.

From the white sands, rock pools and sand dunes of the bay, we could see a classic white light-house standing tall. A beacon of hope for hundreds of years for hundreds of people, lost at sea.

Lovely long walks along the headlands, fresh sea-breeze and delicious sea food. And, lots of exceptional cream-teas- especially the one at Bedruthan steps. Wowwie!!! It was indeed, like a dream. Our Scrabble travelled with us. In London we don’t get time to play it. So, here was our chance.

After dinner on Wednesday, I opened the green cardboard box. We were with friends who were half willing to play. We agreed to form 2 teams of two each so we would be able to consult and won’t have to wait too long between goes. As I unpacked the box, I found some old score sheets in there. They had 2 columns of scores – one for Saagar and one for me.

My heart lurched up to my throat and my eyes stung and burnt. I took a deep breath, closed my eyes and smoothened out the contortions of my face. I didn’t want to spoil the evening for everyone. A good game is had by all and we are off to bed by 11 pm.

“I am in a strange building in a strange sandy seaside town. I am wearing strange flowing green garments. Someone says three people are waiting to see me outside. After a while I walk out to see these people. 3 young men are seated on comfy cane sofas in a shaded balcony. As I walk towards them, one pair of eyes glints back at me bathed in recognition. A knowing smile flashes across his handsome olive face.

I freeze and stare. His hair has grown. He has blonde highlights, like he did when he was 15. He is wearing a big tan jacket and looking so good! He stands up and steps gently toward me. I look at him is disbelief. He holds me in his trademark big bear hug.

“You know how much I’ve cried.” I whisper.

“I know.” He whispers in his sweet young-man voice.

I hang on to him, never to let him go.”

Then the flood gates of my conscience are flung open and once again I am staring at a gaping hole. Another day … love … longing … The sea pinks … endure. The light house … hope …