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

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.

At 15.

Cricket in the summers and badminton in the winters. That’s what Saagar chose to play during his school years. He was good at both and wanted to be better.

I often went along to watch him play, even though I didn’t appreciate all the technicalities of either game. One evening we gathered in the Sports club to watch him play. I noticed that every time he missed a shot he hit his right leg hard with the badminton racket gripped in his right hand. That must hurt. I didn’t understand. It distressed me. I spoke with him later. “It’s only a game, darling.”, I said. He kept quiet, neither defending his action, nor arguing with me, pointedly focussing on the piece of ground hit by his obliquely downcast eyes.  In him I saw a boy in pursuit of perfection.

Out of the blue he broke up with his lovely girl-friend of 7 months. That too on Valentine’s Day. His first love. Sweet and innocent. On being asked why, he said, ”It’s boring.” Soon after, late one night I gleened tears in his eyes as he hugged me, pretending not to sob. In him I saw a boy, trying to be a man. Oh! The pains of growing!

After a night out with friends, one weekend I noticed a cluster of 3 pea-sized fresh burn marks on his right forearm. Horrified, I asked what happened. He said it was a dare. A few of his friends were being goofy and challenged him to hold the burnt end of a cigarette on his skin and he did. He laughed as if it was a joke. I didn’t know what to make of it. How could this bright kid with an astute sense of right and wrong be talked into this kind of silliness? In him, I saw a boy trying to fit in with his peers.

Was there more to see? Did he tell me everything or just what he thought I could handle?

We love. Therefore, we are.

Nearly 5 years on, we gather again. This time it’s a 25th birthday party. Many in the room are in their mid-twenties. It’s their party. It’s everyone’s. There’s an open mike. Young voices. A few songs are special – Dolly Partons’ ‘Jolene’, Timberlake’s ‘Cry me a river’. By divine conspiracy, there is this song from the CD Saagar got me one Christmas –  Corinne Bailey Rae’s ‘Girl put your record on’. I sing along nice and loud, word for word, like I used to, a long time back!  It’s our music, biryani and laughter. A strong sense of belonging binds the room together. Sadness and joy are everywhere, stuck together like conjoint twins.  

When I supposedly had ‘everything’, I didn’t know how to access true joy. Now that I don’t have ‘everything’, I do. Even if it happens for tiny snippets of time, it happens in its fullness. It’s like being immersed in a singing warm ocean of bliss. The brickwork of resistance drops off. Everything is in harmony with my cosmos. Everything that steps in the way melts away. I am complete with everything just the way it is. This enticing path of joy meanders through a dark forest of grief. I carry the forest with me. And its black shadows. And all its wild animals that threaten to kill. We celebrate. We sing, laugh and we dance. We hug and cry and eat and drink as one. We are held in the warm embrace of a field of love that nourishes our souls.

We hurt alone and heal together.

Uganda Diaries

Frantically searching for an important document, I rummaged through all my papers up and down the Study. My mind can’t be trusted with anything anymore! My memory is shot. I exhausted myself and all my options. Over a cup of tea, I thought about all the places I had not looked through. A box full of Saagar’s books and diaries. I never read through any of his personal stuff. But that day, before I knew it, I had read all his musings from his travels to Uganda with a friend. They were there for 2 weeks to help at a local school supported by their College.

It seems when he was struggling, he wrote. Like me. He wrote exactly as he spoke, leaving some words half said and stretching out the first letter of unspeakable words. His diary was reading itself to me in his voice. I felt like he was in the room. I was an intruder. It wasn’t my place to read it. It was personal to him. But it was also my conduit to him even if it was written 27 months prior to Day 0.

It was clear that the boys were totally unprepared for the massive change. This is the note from his last day there.

30/7/2012. 2300 hrs.

“Never before have I been able to say the words “I want my mommy!” with as much certainty as now. This sucks ass. I feel like such a pathetic little shit. I hope missing Mother is no more than a manifestation of homesickness.”

A deep feeling. Then a judgement. Then an admonishment and then a substitution. A minimization. A classic example of a young man being brutally unkind to himself even though he is suffering. Being a ‘man’. Not allowing for any fragility even in the face of a harsh reality.

Fact: He missed me. Thinking of me brought him comfort. I have evidence.

How could I ever doubt that? By judging myself too critically. Why do we do this to ourselves?

That was a beautiful gift from you to me on your birthday my son. 25th birthday! Bless you my love.  

Mum’s the problem.

Recently I have met a Professor of Psychotherapy, a Consultant Psychiatrist and a GP – all parents of children lost to mental illnesses. Here’s what one mum says:

“Whenever I have seen a therapist, they have gone straight to my childhood, my up-bringing, my parents and their parents. All my behaviours and feelings seem to be explained and understood based on their behaviours, however ‘normal’, for their times. I am encouraged to think of all the ways in which they could have directly or indirectly damaged me.

By that principle, all of my child’s behaviours and feelings should be explained and understood based on the behaviours of his parents. Half of them is me. I agree. I must be part of the problem. My profession is perceived as a bigger problem. ‘High achieving Asian’ parents are assumed to put a lot of pressure on their children. So much so, the medics looking after him didn’t even need to meet me or know the quality of our relationship to be certain that my job makes me a bigger problem than most other mums. They could squarely put the blame on me and actively keep me out of the picture. I asked too many questions. I was the biggest problem. They wrote it in their notes.

However, that does not mean that I cannot be part of the solution. NICE guidelines lay out my role beautifully but do the people on ground read any of these guidelines? In my experience, not. If half of all that is written in Policies and guidelines was implemented, families could engage meaningfully in helping their kids recover.”

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Ref: https://www.nice.org.uk/guidance/cg185/chapter/1-Recommendations#recognising-diagnosing-and-managing-bipolar-disorder-in-children-and-young-people-2