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.

Feathers etc.

10 weeks back I was surprised to find an all-day course in ‘Mindful Self-Compassion’ for Health Professionals advertised on the Trust intranet. It sounded great and it was for free. Wow! We are recognising the pressures on health care professionals and moving slowly but surely in the right direction. To organise a course like this and make it available to all staff at no cost is nothing less than super-fantastic.

I enrolled instantly and waited patiently for the day to arrive. The day arrived.  I entered the room to find all these items scattered neatly around the room: a bowl of smooth tactile pebbles in purple, maroon, white and yellow, little bottles of lavender and vanilla extracts, fantastical eye-catching postcards, maracas and manjiras, a white rosary in a tiny wooden box, sketch pads with charcoal tree sticks, a bunch of sea shells, sprigs of fresh rosemary and mint, a dried corn on the cob, a few white and brown feathers, a spongy red ball and a spiky yellow plastic one, a tiny hand-crank music box and an hour-glass with pink sand. These things were for us to appreciate, touch, feel, smell and listen to.

Two gentle young women led the day taking great care of everyone in the room and in complete harmony with each other. We started with a ‘soft landing’ – becoming aware of our feet on the floor, bum on chair, our breath and our finger tips. They called these short snatches of peace, the ‘green moments’. We were encouraged to create/access these green moments to transition from seeing one patient to the next or from work to home mode and vice versa.

The word ‘discernment’ was brought into my awareness. While the dictionary meaning of it is “the ability to judge well”, we were encouraged to scan our thoughts and ‘notice what’s not helpful’. It was a useful concept. It helped me locate stuff that was unnecessarily cluttering up my mind and blocking light from entering this sacred space.

I remembered that as a teenager I had a big scrap book filled with my collection of feathers of all kinds, my favourite being the peacock feather. Where did that dreamy girl with 2 pig-tails go?

For a while I could hold the little girl in me lovingly in my arms and marvel at her innocence and beauty, appreciate her child-like sense of wonder and creativity. This sweet girl is me. Perfect and complete in every way. All she needed was to be seen. By me.

Caring with compassion for you and me.

No shame. Just love.

Last week I met Matt. A young man, calmly determined to share his story and open up a rainbow that would envelop the world and knit it closer together. A story of a glorious love, a damning shame and a tragic unnecessary death.

Matt and Naz met in Birmingham in the year 2000 and instantly fell in love. Matt Ogston and Dr Nazim Mahmood. Both men. Men in love. They tried having a relationship in that city but knew that if they wanted to live like normal people doing normal things, they’d have to move away. So, they did. Over the next 13 years they built and lived a fulfilled and happy life together in London. All this time they managed to hide their gayness from Naz’s family as it was guaranteed to create unhappiness.

One weekend Naz needed to go back to Birmingham for a family event. The question of his sexuality came up and he spoke the truth. As expected, his family reacted badly. He was told that he was living in ‘sin’ and his ‘condition’ was treatable. I cannot imagine how he must have felt. Deeply humiliated I guess. That day he must have known that now, he could never be the man he was born to be. His love for his fiancé would always be seen as sin by others he deeply loved.

He returned to London. To Matt. Two days later he ended his life.

In his utter devastation, Matt found the determination to do what he could, to stop religion from getting in the way of love. He set up the Naz and Matt Foundation.

“Our mission is to never let religion, any religion, come in the way of the unconditional love between parents and their children.”

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

It is all a dream.

Dream

When I stood in front of all those people, my arms were branches of an old oak flailing in a wild wind, my throat was shouting out commands like a drill sargeant at the top of his voice, my eyes were wide open and desperate to get through to everyone in the room. My chest was an erupting volcano and my feet had thrown deep roots into the ground. I invited Saagar and all my angels to help me as I felt exposed. The ‘normal’ part of me wanted to protect Saagar and me from people’s judgements. I am sure some were being made as I spoke. That is ‘normal’ too. But the mother in me stood like a warrior, absolutely disregarding any consequence, complete in the conviction that this was the right thing to do. It was difficult but it was worth doing.

Three times this week. Three times I got to show Saagar off to a bunch of doctors – 250 and 18 and 9. So, 277.  They saw the light in his eyes. They now know that many suicides are preventable. They know the stigma and silence of mental illness and suicide. They know that every mention of suicidal thoughts should be taken seriously. That if they notice a colleague, a friend or a family member behaving strangely, they can ask them ‘Are you ok?’ And whatever the answer, they can deal with it.  They know that it’s ok to go as far as asking, “Are you thinking of ending your life?” It’s difficult but worth doing. It might save a life. That no one is immune. That everybody can make a difference. That many doctors are lay people when it comes to suicide and believe in popular myths. That doctors, dentists and vets are very high risk groups and need to take good care of themselves and each other. That the medical curriculum is all about physical illnesses. That Mental Health services are broken in this country and we all need to educate ourselves and strongly advocate for our near and dear ones if, God forbid, the need arises. That charities like Papyrus do a great job of helping young people. That when it comes to suicide, there is only prevention. No cure. They now know when, where and how to find help.

Later on, a young lady chatted with me about how useful she found the content of my presentation and how it helped that it was delivered in such a calm and composed manner. Really? Was she talking about me?

Ref: Art of Conversation (NHS Scotland) :
http://www.healthscotland.com/documents/2842.aspx