Blue Rose

She was the colour of almonds. Her smile so bright, it made the sun shine. Her hair waist-length, wavy and a very dark brown, like a heavy veil down her back. Her petite frame, shy, smelt of sandalwood. She was only 19.

Her friends had rebellious red, pink and green highlights in their hair. Some had happy multi-coloured beads and braids woven in. Others had playful ribbons platted in, like flower-girls at hippie weddings. She sat on her aquamarine blue sofa with her laptop, peering through colour-charts. She wanted her hair dip-dyed. She hadn’t picked a colour yet.

It was going to cost a bit but her mum had agreed to pay for it. She often did.

When alone in her room, unable to sleep at 2 am, Rose had looked up Helium and what it does. She didn’t know why. It was an involuntary act. It was nonsensical. Her body and mind were no longer of her.

Her hair appointment was in a couple of hours. She had to decide now. It was important she got this right. It was an expensive decision. The staid Royal blue or the scintillating Moroccan Turquoise? Silky peacock blue or the majestic sapphire? She wanted a straight horizontal line to run right across the dark sheet of her hair. The bottom one-third of the length a startling shade of blue, like a designer curtain.

She played classical music on the violin. Her ears didn’t particularly savour the Blues. They jarred her. She didn’t have a taste for blueberries. She preferred the ‘rasp’ variety with big dollops of double cream. Her wardrobe was a smattering of whites, pinks and reds. No blues there either, except the denim jeans and shorts. She was a proper girlie-girl. Blue skies made her spirits soar. But they left blue stains on her heart. She hid them like children hide pretty pebbles in corners of drawers. Her smile kept feeding the sun through the blueness.

She hand-wrote letters to the people she shared the house with, in blue ink. To her mother she said how wonderful a mum she was and she should take better care of herself. To her sister she expressed her appreciation for her companionship, friendship and laughter. Her little brother never left her side. She never turned down his invitation to play any kind of silly game with him. The dogs were all hers. They didn’t know they weighed as much as her. She had to sit down when they clambered all over her saying ‘we love you’.

The blue stains on her heart were expanding like drops of ink drip-dripping on a white blotting paper. She knew it was happening but didn’t know what it was. It’s creepiness had no name. It made her want to escape. It compelled her thoughts to convince her that her deepest desire was to implode. She had no say in the matter. It made her hands look up Helium on the internet. It kept her eyes wide open at night. It made her tummy churn, her legs restless and her head hurt. She now had 2 hearts and she moved between them. One blue. The other not. One wanting out. The other wanting blue hair.

“I am finding this difficult Mum.”

‘We need to leave in about 20 minutes for the hair-dressers my darling.’

“Yes. I am thinking about it … looking up the options on the internet.”

‘Good idea. We can take your laptop with us. I am sure the hair-dressers will have some ideas for you. Don’t worry.’

“I have some ideas but haven’t decided yet.”

‘Take your time. No rush.’

Midnight blue was the final choice. She was happy.

Over the next year that wretched blue embedded deeper into her heart and from there, leached into every cell of her body. Then it burst out, released itself and merged back into the midnight, the sky, the ocean.

That was 5 years ago. Till this day, her mother’s mind twists into painful knots when she remembers that day. How could her lovely Rose have wanted to live with blue hair and at the same time, to not live at all? At nineteen! How?

No one knows. Sometimes it’s like that.

———————————–

A video for every parent: https://www.youtube.com/watch?v=3BByqa7bhto

Human rights issue – Families Matter

Hundreds of times, in waiting rooms outside Intensive Care Units I have looked into the eyes of sons and daughters, spouses and partners of patients, held their hands and said, “We did all we could. I am so sorry for your loss.”

When Saagar died, no one looked into my eyes and said that to me. They had not done all they could for him. The hospital carried out a sham investigation, a futile exercise in ‘being seen’ to be doing the right thing.

The GMC found everything to be hunky dory. The doctors ‘looking after’ Saagar had done their jobs to perfection. Just too bad the patient was dead. They did not deem Saagar’s case worthy of an investigation. GMC’s role in its own words:

We work to protect patient safety and support medical education and practice across the UK.”

The Coroner’s report shone some light on the holes in Saagar’s care. It clearly pointed out the things that South London and Maudsley (SLaM) Hospital got wrong.

  1. There was a general failure to identify the diagnosis on the discharge summary from the Home Treatment Team to the GP.
  2. There was a general failure to communicate thoroughly enough with the parents about the relapse symptoms, what to watch out for and where to go for help in the future.

Last June, I wrote to the CEO of SLaM, requesting an update on the changes that had been made in his organisation in response to the Coroner’s findings above. He said someone would get back to me and I heard nothing. This June, I sent him a reminder and again he said someone would get back to me and I am still waiting.

What are my rights as a parent? Is this too much to ask?

What were Saagar’s rights as a young man with a mental illness?

Are our lives not as important as anyone else’s? Black or white or brown? With Cancer or Diabetes? Or Bipolar Disorder?

Everyone deserves to be heard and seen. With respect.

It’s not charity. It’s a human rights issue.

Ref: Learning from deaths: Guidance for NHS trusts on working with bereaved families and carers

India – talking Mental Health.

Asian countries account for more than 60% of world suicides.

According to the WHO, in the year 2016, suicide was the most common cause of death in the 15-39 age bracket in India, the highest in the South-East Asian region. India’s own official statistics, which map the number and causes of suicides in the country, have not been made public for the last three years, hindering suicide prevention strategies and efforts to implement the WHO’s recommendations in this regard.

In 2014, the WHO released a report with a series of recommendations for successful suicide prevention. It proposed a public health model for suicide prevention, consisting of four steps:

  • Surveillance
  • Identification of risks and protective factors
  • Development & evaluation of interventions
  • Implementation

India has not progressed beyond the first step. Lack of political will, social stigma and inadequate mental health awareness in the general and medical communities contribute to the continuous rise in the death rate of young people by suicide in India.

A Junior Doctors World Congress was held at my alma mater, Christian Medical College Ludhiana in April 2019. Si and I ran a Mental Health Workshop that was attended by 75 medical students from India and the wider South and South East Asia region. 

Motivated by this event, some students have established community mental health support networks and mentorship programmes at their respective institutions.  I am impressed with their passion to make a difference.

Here is an example:

Early March I was back in Delhi and was honoured to be invited by Shruti Verma Singh, the founder of a Youtube channel, Zen-Brain.com. She is determined to increase the emotional awareness in India and does it gently, through a series of interviews. We met one afternoon to talk about Saagar. I hope her work will help wake up the government, break social stigma and drive understanding and compassion.

Nowhere to go.

On the 9th of March, I reached Melbourne for the second leg of the Churchill Fellowship. I had been looking forward to it for ages and just couldn’t wait to get started. I had the taken the whole month off. Despite the long journey I didn’t feel any fatigue. My AirBnB was homely and comfortable. After a good night’s sleep, I was ready for work.

The Beyond Blue Office was easy to find. After a brief introduction to the team, we all went out to get coffee together. I was already one of them and the coffee was great. The following days flew past with meetings, interviews, presentations and briefings. A trip to Headspace. Despite some background murmurings of a virus, I was having the best time, learning and exchanging thoughts and ideas. Then Australia closed its borders. Meetings and conferences started getting cancelled.

On the 16th, I took a return flight to London.  My trip shrank from 3 weeks down to one. I had to miss Sydney altogether. Now, I am back here with a blank diary for 2 weeks and I am loving it. I have volunteered myself to work and I am on standby.

I can now research and look up things I’ve been meaning to for a long time. I can clear out one cupboard every day and get rid of stuff I don’t need or use or get joy from. Unclutter and create space in my house and my head. I can go to bed without setting an alarm. That pile of unread books that’s been sitting atop my table, feeling ignored and giving me dirty looks, can now be tackled.

Part of me is rushing in to fill the time with a list of a hundred things to do but I am consciously slowing down. Having an easy routine. Fitting in things I love doing, like arranging flowers. Making time for friends. Cooking. Walking. Not getting hooked to the media but keeping an eye. Writing hand-written letters to loved ones. Sitting still. Enjoying our home. Truly appreciating the weirdness of our cat, Milkshake. Cherishing having breakfast, lunch and dinner with Si as he works from home.

Simplify. Make easy. Make plain.

The Way Back – supporting attempt survivors – an idea worth adopting.

Mental – I – zation

He was 15 when his Hungarian parents thought it would be best for him to come to live in the UK with another family. His parents were refugees in Paris and he in London. World War 2 had ended a few years prior. The times were turbulent and many people were having to make difficult decisions.

This boy did not speak English. He landed up amongst strangers, completely inhibited, unable to do well in school. He was teased and taunted by his contemporaries and no one understood him. At 16, he became seriously suicidal. He had a plan. One day a neighbour noticed that he didn’t look great and encouraged him to speak to someone at the Anna Freud National Centre for children and families.

 “The therapist who saw me could see beyond the struggles and see another person, see they had certain competencies and capacities, and that, if you removed some of the inhibitions, the self-defeating behaviours, and got access to my more positive side then I could do quite well,” he remembers.

Prof Peter Fonagy is now a leading contemporary psychoanalyst who has propounded and researched the theory and practise of ‘Mentalization Based Therapy’ (MBT). He is also Chief Executive of the Anna Freud Centre for Children and families. In simple words, mentalization is the effort an individual makes to understand someone else’s thoughts, feelings, hopes, beliefs, desires and behaviours. It is the ability to mind other minds, to understand misunderstandings, to see the impact of our behaviour on others, to see oneself from the outside and others from the inside. MBT is said to be especially helpful in the management of Borderline Personality Disorders.

The things that block mentalization are, firstly, the strong feelings of anger, shame and fear. And secondly, defensiveness, not wanting to know what’s going on in another person’s mind.

I can see how mentalization could make each and every relationship work. Not just the ones we have with others, but also the most important one, the one we have with ourselves.

Our own voices

Paramedics and trainee paramedics rotate through our Department of Anaesthesia to learn to manage airways safely. A few weeks ago, I had a young man in his mid-thirties, a trainee paramedic with me, learning about airway management. Out of curiosity I asked him, “What is the most annoying part of your job?” He was straight-up, “When people inflict injuries on themselves, I think it’s such a waste of time. It takes away from others with real problems, who really need our attention.” I just smiled. I wasn’t surprised. I know full well that paramedics do a great job of looking after all kinds of people in all kinds of trouble. But attitudes can only be changed through education.

A professor of Psychiatry tweeted today “Twice in the last week I’ve been told of cruel comments by health staff to people who had self-harmed. I really believe this is unusual now but it shows there is something deep-rooted that we have to eradicate.” A classic example of ignorance within medicine of attitudes within medicine.

No training of first responders is complete till someone with lived experience of a mental illness has spoken with them, be it a police academy, social workers, fire fighters, nursing or medical students or ambulance crew. Lived experience includes suicide attempt survivors, others who have experienced a suicidal crisis and those who have lost a loved one to suicide. Sharing by these individuals can be a powerful agent for challenging prejudice and generating hope for people at risk. It enriches the participant’s understanding of how people with these serious disorders cope with their symptoms, recover and lead productive lives with hope, meaning and dignity. The program also empowers those who are faced with mental illness and provides living proof that recovery is an ongoing reality. Presenters gain confidence and self-esteem while serving as role models for the community.

Disproportionate focus on research and clinical expertise too frequently fails to see the person at the centre of a crisis as well as their loved ones who ride the wave of terror of suicidal behaviour. This needs to change and with urgency.

Lived Experience is an underutilised and underappreciated resource in the UK.

Roses in the ocean, a charity in Australia is an excellent example of harnessing this invaluable resource and making a huge difference.

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.

Pink Dinosaur

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She was 29. She had suffered with severe anxiety and depression since the age of 12. She was diagnosed with Borderline Personality Disorder and other things.    “I have never been happy – I don’t know the concept of happiness”, said she. Aurelia had spent a couple of years in a Psychiatric unit and a couple in a prison. She wanted to be freed from her body. Doctors in the Netherlands agreed to assist her to end her life. On the 26th of Jan 2018, she drank the poisonous mix of drugs (supplied by medics), cosy in her bed, in the presence of her pals and 2 doctors, clutching her soft, pink, toy dinosaur and peacefully slipped away.

This is the beginning of the death of hope. I have full sympathy with Aurelia’s suffering. The question is:
Had every other option been fully explored and found useless?
Had she read Buddhist teachings or volunteered to help conserve a local park or anything else?
Had she tried travelling to a different country with a different vibe?
Had she tried Homeopathy, Ayurveda or Chinese traditional medicine?
Reflexology, Aromatherapy or Kinesiology? Music, theatre or art therapy?

The range of options explored are limited by the limitations of the imagination of ‘the system’. A purely medical approach is useless without attention to social factors. Many social issues cannot be fixed but they can be understood and imaginative alternatives offered.

Her death wish was most likely a symptom of her illness. No?
Does this euthanasia make it easier for many others to give up?
Can we be a 100% sure that she had considered all her options?
Had she received appropriate bereavement support when her mother had passed away?

My deepest condolences to her friends and her Dad.
RIP Aurelia. I am sorry you couldn’t find a reason to live.

_102880132_aurelia_sander976

Youtube clip: https://www.youtube.com/watch?v=ySVKF5_6gfM

 

Inheritance of fear

The past is never dead. It’s not even past.”
– William Falkner. Requiem for a Nun.

The echoes of past traumas get subconsciously played out by us in our everyday lives. Sigmund Freud called it ‘repetition compulsion’ – an attempt of the unconscious mind to replay the unresolved so that we can ‘get it right’. This mechanism drives its way through generations. Jung also noted that whatever is too difficult to process does not fade away. It gets stored in our unconscious and finds expression in other ways. He says,” When an inner situation is not made conscious, it happens outside as fate.”

Here’s an example: Jake was 19. He hadn’t slept a full night’s sleep in more than a year. He had developed dark circles around his eyes and a blank stare in them. He looked at least 10 years older. He had been a star student and a great athlete but the insomnia had left him lifeless. This thing had no explanation and none of his doctors or psychologists or naturopaths could figure it out.

It had started with Jake waking up shivering one night at 3.30 am, frightened to death. No amount of woollen clothing warmed him up.  Soon, insomnia became a daily ordeal. Despite knowing that his fear was irrational, Jake was helpless and could not relax. The ‘freezing’ feeling associated with the first episode was quite peculiar.

On exploration of Jake’s family history, this story came out: His mum’s brother, Uncle Colin,  whom he had never met had frozen to death at the age of 19. He was checking power lines in a storm in the Northwest of Canada. He struggled to hang on but eventually fell face down in a blizzard, lost consciousness and died of hypothermia. The family never spoke his name again.

Now, thirty years later, Jake was unable to slip into sleep at the same age as his Uncle. For Colin, letting go meant death. For Jake, falling asleep must have felt the same. Once Jake could see this link, he was able to free himself of it with the help of healing techniques taught by Dr Mark Wolynn, a neuroscientist with an expertise in breaking inherited family patterns.  His book “It didn’t start with you”, describes some of these practical tools.

Scientists are now able to identify bio-markers as evidence of traumas passed down from one generation to the next. Studies on Holocaust survivors and their children have revolutionised the understanding and treatment of PTSD all over the world. Be it fear, guilt, low self-esteem or anxiety, the roots of these issues may reside in the traumas of our parents, grand-parents and even great-grandparents.