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…”

Ode to Fall

Spring falls

leaving traces behind  

on every leaf.

Leaves fall

As if in love

with the ground.

Trees

Display their skeletons

For Halloween.

Standing bereft

Pretending

To celebrate.

A curtain once green

Now a crunching

crispness

Beneath my feet.

Moon falls.

Full no more.

Light falls at

Slanting angles

Turning everything

to gold.

Apples fall

Fill the air with honey.

Acorns fall

All over the pavements.

Each one

A possible tree.

Crack. Crush. Crush.

Pumpkins sit

Outside every door.

Toothy smiles

To match the kids.

Kids fall.

Whimper.

Get up and go.

A season for cuddles.

For magical beauty

And transformation.

Night falls.

Love, let go.

Grow, let go.

Convenient myths.

On a few occasions, after I’ve shared the story of Saagar’s brief illness and sudden death in public, one or two individuals, often men, who’ve possibly been through their own difficulties, have said that there was nothing I or anyone could have done to stop him. I know they mean well and speak from experience. I appreciate them reaching out to me.

For a few microseconds, on rare occasions, I have told myself that may be it’s true that Saagar’s death was not preventable. I have felt my shoulders relax, my tummy unknot and my mind quieten.

Life would be so much easier if I could believe/ accept/ give in to the concept that no matter what, Saagar’s death was inevitable. That the planets were misaligned and his demons got the better of him. That this was his destiny and it was ‘written’ in the balance sheet of his karma. Life would be easy if I could be complete with the fact that many people with depression/ Bipolar/ other mental illnesses will die young. Sometimes within 10 weeks of their diagnosis. What if I changed my outlook so I could have peace?

What if 3 decades ago everyone accepted that people who got AIDS would be dead within a few months or years. And then nothing more was done about it. That’s just the way it was and that’s how it would stay. Would we reach the stage where we are today, where thousands of individuals lead near normal lives for decades on regular medication, where HIV is not passed on from a carrier to another if the former’s viral load is sufficiently low.

Today, in the UK, cancer care is excellent and cancer research is huge. Anyone who gets diagnosed with cancer can be sure to get prompt and high quality specialist care for as long as needed. So much so that if a child is diagnosed with cancer, the parents automatically get assigned a therapist. We have come a long way.

On the other hand, if a child or an adolescent gets a mental illness, the patient can barely get the attention they need. Never mind the parents. It can hardly be a co-incidence that all the bereaved parents I meet are certain that more could’ve been done to help their child. Not all of them are deluded. Or are they?

Here’s Robert and Linda’s story. They sadly lost their talented young son Richard Wade. They too believe his death was preventable. https://www.youtube.com/watch?v=FofR47rM1BQ

The more we ‘accept’ that these young deaths are inevitable (as the myth goes) the more we keep quiet, the less likely it is that things will change. Accepting might be the wiser thing to do. It might be better for our mind but it may also contribute to future deaths. The easy road may be the wrong road.

We’ve reached 41% of the funds we need to complete the film, 1000 days. Please help us release this film so we can bust some of the myths that surround suicide and bring this subject into society’s consciousness.

Click on: https://www.indiegogo.com/projects/1000-days

A big fat THANKS to all of you for being a constant source of strength for me.

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 ]

A tiny shift

58 months. Nearly 5 years.

And still, the first thoughts in the morning that rush into me to invade and occupy my conscious mind are those of Saagar. Like multiple grey moths stuck on the dark walls of my room, waiting. Then hurtling into my head the moment the light in there is turned on. Bringing in the darkness with them.

Everyday. Still. Sure as the morning, the sunrise. The thoughts. The moths. The darkness.

A mantra I created for myself, for distraction, salvation: “Thank you for this day. Thank you for Si, my family and friends. Thank you for Saagar.”

Often times it works. Sometimes its impotent. Useless.

I need to find a way to get out of bed without a dagger being struck in my throat even before I’ve opened my eyes. I speak to some learned people and they tell me to make a slight shift. They say that everyone comes into this world to experience X amount of happiness and Y amount of sorrow. So, when I think of Saagar, I should think not just of the suffering but also the love and joy in his life. I shall do this tomorrow morning. The moment my sleep is over. I will.

Tonight I share this link with you. It is the link to the promotional pages for the short film I mentioned the last time. It will be called “1000 days”. It hopes to cause a tiny shift in those who might watch it. Collectively, they all might bring about multiple small shifts towards greater connectedness in our world. The aims of the film are to:
1. Educate people that many suicides are preventable.
2. Empower everyone to ask for and offer help, hope and understanding.
3. Enable all of us to feel less alone.

https://igg.me/at/1000days

Your support is invaluable. Thank you for being here. Your contribution might save a life. Good night. xxx

Heartbreak Syndrome

Screen Shot 2019-04-27 at 18.48.41

Carrie Fisher: Date of death 27th Dec 2016.
Her mother, Debbie Renolds’ date of death: 28th Dec 2016

Emiliano Sala: Plane Crash – 21st Jan 2019
(Death confirmed 13 days later).
His father, Horatio Sala’s date of death – 26th April 2019

Both these parents died of natural causes. Horatio Sala was only 58. For days after the crash, he was not sure what was happening. “Hours go by and I know nothing. It makes me think the worst. I know nothing. Nobody has spoken to me. Not a call from the Embassy, the club, from anyone.”

I cannot imagine how stressful that must be. After the ‘worst’ was confirmed, the investigation was a protracted one. Horatio’s angst is palpable on the video clips. The grief and anger of it must have caused a sustained and prolonged release of adrenaline which greatly raised his pulse and blood pressure, making his heart work harder, making his blood sticky and ruining his immune system. Research also shows that in the first 30 days after a loved one dies, your risk of dying too is significantly increased. There are many stories validating this finding.

More than a month after the crash a BBC report said, “Some operational aspects are yet to be determined, such as the validity of the pilot’s licence and ratings.” What must that do to a parent! “Air accident investigators will continue to look at all operational, technical, organisational and human factors which might have contributed to the crash.”

They will continue to look I am sure but for the bereaved families, there is no resolution till the investigation is complete. They don’t feel settled until then. They are haunted by unanswered questions. The big and noisy fight inside overshadows everything else. There is no sign of ‘peace’ for at least a thousand mile radius. A prompt, fair and proper investigation is essential for them to start grieving properly. Losing a child is bad enough. A parent should not then have to fight for facts and justice.

Sadly, even the medical profession does not understand sudden traumatic grief. Often the investigations are a sham, take forever and produce vague statements like the ones above. I know many parents whose suffering is insulted and prolonged for this reason. This must change. It breaks my heart and many others.

PS: Very sorry for the pilot, Mr Ibbotson’s death. The system failed him too. If he did not have an appropriate licence, the system did not stop him from flying.

Inventory of Loss

Just like old trinkets, losses sit about in our being for years, forming layers upon layers, rusting us on the inside. Most of the world walks around with a thin film of red rust of unresolved grief just under their skin. A long list of losses dressed up as something else hides behind this film.

When Russell was 6, he went for a basketball game with his dad one Saturday. He lost his little blue jacket there. His dad gave him a good hiding for that. For Russell, it meant loss of safety. Did anyone recognise this as a loss? Nope.

When Saagar moved from India to Northern Ireland, he didn’t know English very well. He was one of three coloured kids in his Primary school. Something as fundamental as his name was alien to all around him. One day he came home from school and asked, “Can we change my name to Alan or something?” For him, this move meant loss of a sense of place and a sense of self. Was it acknowledged as such? Nope.

When the Tsunami washed away thousands of villages on 2004, Saagar was stunned. Until then he had faith in God but after watching the devastation caused by it on TV, it was all over for him. He said, “If there was a God, He would not allow such a horrible  thing to happen.” It meant a profound loss of faith for him. Did we know how to deal with it? Nope.

When I was diagnosed with Rheumatoid Arthritis, I was 42. It mainly affected the small joints in both my hands. I worried about my ability to work in the future. With correct diagnosis and medication, I was back to normal in a short time, but for a while I lost my confidence, my sense of security. Was it expressed and addressed? Nope.

Yes. We accumulate losses without knowing it and our inventories continue to add on more items when we’re not looking.

I am learning to look at and validate all my losses. I am learning to be complete with them.  As Christmas is approaching, I am aware that that empty chair at my dinner table will hurt. But I am grateful that Saagar once sat there. I am already grateful for all those who will be in their chairs that day. I am also determined to make them feel special and wonderful, loved and cherished, like I would Saagar, if he were here.

PS: In Jan/Feb 2019 I hope to start a series of 8 weekly Grief Recovery workshops, 2 hours each. Up to 9 participants can be accommodated. It will most likely be on Tuesday evenings in South London. If you think you would like to work with me and take small actions towards healing, please do let me know. Thank you.