learning

Varanasi

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This ancient city of learning and burning sits on the banks of the river Ganga which is home to Saagar’s ashes. We were here twice, within a few months of Saagar’s passing for various ceremonies related with the sudden and tragic nature of his death. A year ago, my Irish medium who I have come to rely on, informed me that the elaborate prayer services that were held for him here had been greatly helpful in freeing his soul. I have no reason to not believe her as everything else she tells me makes sense.

Last month I was back in this iconic city for a long weekend, celebrating the writings of my favourite 15th century poet and philosopher, Saint Kabir.

“Scholars are never made 

from reading countless books.

You only need to understand ‘love’

to be a true scholar.”

Twenty three years ago I left India as a motivated young professional thirsty for knowledge, professional growth and ‘success’. I was a naive kid. I did not know who I was. Now it feels like I’ve taken a tortuous and torturous route to finally come back home, to myself.

Yes, I passed many exams. In the year 2000, I traveled to Dublin for the day, for my first post-graduate exam at the Royal College. As soon as I returned home, Saagar, who was six at that time asked me, “Mamma, did you win?” A huge smile descended on my face and my entire being. I forgot about the stress of that day and the preceding months and got lost in our cuddles and giggles.

I did grow in my work and was ‘successful’ but the most important lesson I am learning is to understand, experience and be love.

The only lesson that is worth learning.

Meeting old friends for the first time.

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Meeting old friends for the first time. In at least three dimensions. Sharing a physical space together, not just a bland rectangular screen. Actually holding hands.

“Gosh! You’re for real!”

The sparkling smiles of recognition mixed with disbelief. The hugs offering heart to heart resuscitation and healing. Sitting down side by side on the sofa, sharing stories, tea and cake.

A year ago, this could have been fiction but last weekend it was fact. While volunteering at a retreat for Bereaved parents hosted by The Compassionate Friends, we finally met people we’ve only ever seen on Zoom. It was held at the simple and serene Woodbrooke Centre, a Georgian manor house in Selly Oak, Birmingham with tall trees, beautiful flower beds and a family of geese perambulating the grounds, intermittently honking. It is a Quaker centre and has a poster in the main foyer which reads “Nameless helping the Nameless”.

The garden in front of the main house has a labyrinth mowed into it. Early on Saturday morning, birds were singing and the light was inviting me into the open. I decided to walk bare feet into the center of the labyrinth. I took my shoes and socks off at the edge of the circle. As soon as I started walking, it turned into an extremely mindful experience as the ground was littered with geese droppings.

The silence in that place was sweet and the views a treat. We talked about the importance of finding meaning. We shared the joys and challenges of taking the inward road. We watched a film and sang together. We wrote from our hearts and created pretty little candle holders for our kids from jam jars at the crafts table. We cried and laughed, reassured that in this company, it was completely acceptable to do both, sometimes simultaneously.

A pleasant exchange. Giving and receiving with compassion. Understanding. Belonging. Learning. Holding the utter magnificence of life in one hand and the absolute devastation in another. That’s what this game is all about, I guess.

The Golden Buddha

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Once upon a time, far in the east, there was a country called Sayam. In the capital of this country there was an ancient temple of the Golden Buddha. People made long pilgrimages to visit this temple. Everyone knew of it and wanted to see the massive golden statue of the beautiful Buddha within.

One day the news came that a fierce foreign army was approaching the capital. The monks and devotees got together and quickly covered the statue from head to toe in mud and dirt. They made it look ordinary, with every bit of gold out of sight. It now looked dull and drab with no sparkle at all. It even gave out a peculiar odour that had to be camouflaged with incense.

Yes. The army made a huge clang as it arrived in the city with tonnes of ammunition and aggression, looking to plunder anything of value. A platoon of soldiers with armour and swords rode into the temple and looked around like hungry dogs. They found nothing of interest. Just an old dirty statue. They rode out and away.

Over time, new monks and devotees arrived. The old ones forgot to take the mud and dirt off. They forgot to tell the new ones about it. For years and years the Golden Buddha remained in hiding until one day, a young monk was deep in meditation a few feet away from it when he heard a crashing noise. His eyes opened and he saw that a bit of the mud had cracked and fallen off. Smashhhhh…onto the floor. He saw the left hand of the statue glinting in the dim evening light. He walked up to the statue and took a closer look. With eyes as wide as coins he ran out to get the others to see what he had seen. All of them got to work and took the mud shell down to reveal the awesome, pristine Golden Buddha.

This parable reminds us that we are all born pure and all-knowing, one with the divine. Over time we get conditioned to wear the shells or labels of ‘man’ or ‘rich’ or ‘silly’ or ‘mother’ or ‘short’ or ‘engineer’ and so on. Until one day something comes along and cracks the casing, making the gold within visible. Then we can’t help but keep picking at the dirt as nothing else satisfies us. We keep peeling the layers of muck away bit by bit by bit, till it’s all done and we are free.

Isness of Is. Clayness of clay.

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T: It came to a point when she couldn’t bear to celebrate Christmas with her family. Her brother and sister and their respective spouses could roll out one child per year effortlessly while she had been through all kinds of tests and procedures, and nothing. Absolutely nothing but heartache and multitudes of unbelievably negative pregnancy tests to show for it. Six years of nothing.

S: Yes. I suppose nobody’s got it all. Some of the missing stuff is obvious and some not. Surely, even those who appear to have it all have their painful stuff hidden away. Who said everyone has to have everything?

T: It’s hard for her to watch other people with their babies. Intolerable. I can understand.

S: Isn’t that like saying no one should walk in front of a man in a wheel-chair? They might be offended. Let’s all pretend we can’t walk. Poor man! It might be intolerable for him.

T: That’s harsh. That’s a completely different situation.

S: It is an extreme example. Yes. It’s all about comparisons though. Isn’t it? You have something that I don’t. By right I should have what you have. Everyone should have it. But everyone is different. Their life path is different. The lessons coming their way are different. Her unhappiness comes from ‘yours’ and ‘mine’, ‘desirable’ and ‘undesirable’. Kids come with their own brand of drool, cackles, dirty nappies and tantrums. Those things are there for everyone.

T: But her sister’s kid is not hers. That is fact.

S: Indeed. However, the kidness of the kid belongs to the whole world. It’s okay to be jealous – nothing wrong with it. It’s also okay to know there are other possible routes to take, other possible responses to make. She could choose to recognise jealousy as the most conditioned and expected response and embrace it. She could also be present to the pastness of the past, the kidness of the kid, the sisterness of the sister, the aliveness of her life, the heartfulness of her heart and work with that. See what happens. She might be surprised. There might be a beautiful garden behind that wall.

T: It’s hard though.

S: It’s worth a try. There are more Christmases on the way and they want to be happy.

Human rights issue – Families Matter

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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

Could I?

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She ran around chasing her multiple ‘to-do’ lists the whole time. She managed to tick things off it with fare speed. Yet her chores never ended. She didn’t allow herself the slightest slip-up. She slowed down for nothing or no one. Despite running herself down she kept carrying on. Yet she thought she wasn’t quite hitting the mark. There was so much more to do. She lived so much in the future that she could never see the landscape of her own heart or anyone else’s. She didn’t know that if your own cup is empty, you can’t fill someone else’s.

She thought she had everything under control. She didn’t ask anyone for help or advice. Even if they offered it, she seldom took it. She did her own thing. Deep down she knew that she didn’t know best but had no idea how to admit it. She took herself way too seriously. She bull-dozed her way around the marshland of her life and crushed a poor little soul every now and then. She didn’t know how to apologise even when she was truly sorry.

She took herself off to far-away places as and when she fancied, oblivious of the impact it would have on those left behind. She just wanted to fly high, be happy, be free. She made it look like she had it all figured out when in fact, she was lost. She had no names for her feelings. Somewhere along the way she had learnt that it was ok to be a martyr and a bully and she managed to play both those roles to perfection. She didn’t know that it wasn’t ‘hard work’ but kindness that made a life good.

She had been unfulfilled and ignorant in so many ways for so many years but she had no clue. She was under the impression that she was successful. There was so much that she did not know. But none of it was her fault.

Could I forgive her?

She was the mother of my son before Day 0.

Could I accept her? Even love her? Embrace her? Could I?

Our own voices

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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.

Emergency Numbers

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Earlier this year, at a Medical school in North India I spoke to staff and students about the stigma and ignorance around Mental Health. At the end of the lecture one of the senior faculty members asked me a question, “Is it helpful for people with a mental illness to be a part of a religious community?”

‘Yes’, I said. ‘Most certainly. Just like it is helpful for someone with Diabetes to be part of a religious community. It might also be a good idea for them to see a doctor.’

Earlier that day Si and I had taken a walk around the hospital and found this list of ‘Emergency Numbers’ prominently displayed on a notice board in the medical library for medical students, nursing students, dentists and doctors.

Need I say any more?  

PS: It is important for every student in every educational organisation to have ready access to reliable and knowledgeable resources if they feel the need to discuss their thoughts and feelings or are concerned about a friend.

Come October

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3/10/2019. 6 am: I am excited. At the airport, waiting to board my flight to Washington Dulles. Change to another flight to Manchester and then a taxi ride to Concord, New Hampshire. This is the first leg of my travels as a Churchill Fellow. I have checked in and am having a cup of tea. I have just come across this post from a young woman on Facebook:

“According to my local crisis team, I was ‘too articulate’ to be feeling suicidal.
As a writer, and someone who works in languages, I am a naturally very articulate person. Because I could speak so clearly about my thoughts and feelings, I was discharged from the crisis team as I didn’t fit the bill of someone suicidal, or indeed, of being mentally unwell enough to need their support despite evidence to the contrary.

The Papyrus text line allowed me to articulate how I felt (you don’t have any choice really when you’re using the text service, you have to ‘say’ it how it is!!), and that was delved into so much deeper with thoughtful questions, suggestions and recommendations that allowed me to get through a real low point and see that there was hope. At no stage did they reply with ‘sorry, you’re too articulate to be feeling the way you claim’.

Non-judgemental, kind, compassionate, a REAL life saver, especially in the current climate of NHS mental health cuts.”

Judgement. The ultimate wall. Even a positive judgement can be harmful. A missed opportunity. A lost life. Who fills the gaping holes created by ‘unfit for purpose’ services, NHS cuts and ignored carers?

Charities. Families. Friends.

The needs of young people are different. They need an active, positive and creative interaction to make sense of how they feel. They need to be heard and understood. They need to know in their hearts that they are deeply loved and cared for just the way they are. They need to know that things get better. Educating families is crucial.

4/10/2019

Today’s gem: Mayo Clinic video for parents. All parents of adolescents should see this.

Mum’s the problem.

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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