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

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.

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

you is kind. you is smart. you is important.

images-1

My laptop claims to have at least 8 films on it but for some strange reason, on a train from Birmingham to London, it agreed to play just one, called, ‘The Help’. It’s about the writing of a book compiling the stories of African American maids working in white households in Jackson, Mississippi in the early 1960s. A book about an open ugly secret. About the courage of a few to start talking about it as a mark of protest. About the collective impact of small actions in bringing about big changes.

Yesterday was World Mental Health day and the UK became the first country in the world to announce a minister for Suicide Prevention. The day before yesterday, I learnt that Health Education England are very keen to put measures in place to prevent suicides within medical practitioners. Having been a part of the Suicide Prevention Community for the last 4 years, the one profession that is most conspicuous by its absence is Psychiatrists.

At 2 different meetings, I happened to meet 2 different Consultant Psychiatrists. On hearing Saagar’s story, one of them said he was very sorry but ‘this has been happening for 30 years’. I went blank. I just looked at him. I wonder what the public’s reaction would be if a surgeon would publicly admit that his surgical team has been making the same errors, that have been costing people their lives for 30 years. Yes. These are systemic errors. They are difficult to tackle. But, even today, youngsters like Saagar are dying because of lack of leadership within the specialty of Psychiatry, like they have been for the past 30 years.

The other, extremely prominent and respected Consultant Psychiatrist completely rubbished Mindfulness, Yoga and Meditation, without having tried any of them. He said that all these interventions have side effects. He believed that a Psychiatrist is only meant to attend to the most extreme cases. Their role comes into play only after these 5 have been called upon – parents, schools, GPs, CAMHS and Talking therapies. I am sure he knows that many youngsters die while on the waiting list, without ever getting to see a proper Psychiatrist, once. I am also sure he knows the side effects of psychiatric medications that are offered generously to all and sundry by non-psychiatrists. Lastly, I am sure he also knows how unsupported the GPs feel when faced with patients who are severely mentally unwell due to slow and inefficient response from the secondary services. And, I am sure it’s all down to poor funding. The same excuse that we’ve had for decades gone by and will have for decades to come. How about some imaginative leadership?

As parents, let’s start by saying to our kids in words and actions –
‘You is kind. You is smart. You is important.’
To me, I say – ‘I is kind. I is smart. I is important.’
You could too.

No more thorns

The bridge rumbles, shakes and shudders
as trains thunder over it.
I sit under the bridge and everything around me
rumbles, shakes and shudders.
The verticals, horizontals and things in between
judder
Outside and inside of me
I live under this bridge. It threatens to snap and bury me in rubble
Some trains are overloaded.
They crawl on top of my chest.
Crushing me to pulp.
Others come galloping,
Turning me to fine flying dust.
Almost non-existent
Yet, here.
Feeling. Breathing.

Thousands of us huddle under this bridge.
Wondering why our love wasn’t enough
Why no one said anything
Why it keeps happening at a maddening pace
Why we were blind
Why we didn’t know what to do
Why the Earth keeps spinning
Why the breath keeps oscillating
Why the heart keeps drumming.
Why?

4 years ago, it was all happening in September.
He didn’t know he was so close to the end.
I didn’t know I was so close to his end.
Now, I know.
Everyone’s talking.
Was I deaf or is it much too late?

Kingdom of Us: Lucy Cohen presents a film about the life of a family affected by suicide https://www.theguardian.com/film/2017/oct/08/the-kingdom-of-us-review-netflix-teenagers-lucy-cohen

Horizon: Stopping male suicide by Dr Xand Van Tulleken on BBC2 on 22nd August 2018
https://www.bbc.co.uk/iplayer/episode/b0bgv82g/horizon-2018-6-stopping-male-suicide

House of Commons, 5th September 2018: Transcript of a debate by Helen Jones, making a case for changing the standard of proof from ‘criminal’ to ‘civil’ for deaths by suicides
https://hansard.parliament.uk/commons/2018-09-05/debates/B8A2C436-64BE-4694-B4AA-F6535E49E31E/SuicideCoroners%E2%80%99Courts

NICE Guidelines: September 2018: Preventing Suicide in community and custodial settings.
https://www.nice.org.uk/guidance/NG105