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

The Order – a short story.

She didn’t want to feed the monster but after ages, she had time. Time to work her way, one by one, through her long list of ‘Books to Read’.  On top was ‘Rebecca’ by Daphne Du Maurier. She logged on to Amazon and found 23 used copies. One of those would do. After finishing it she would donate it to the local Red Cross Charity shop. This was her formula for keeping a clean, spacious, open home. It’ll be here tomorrow. Magic.

Boredom stayed miles away as her mind landed fancy occupations. Lately she’d been listening to Eva Cassidy’s songs and imitating some of her less well-known paintings on her sketch pad. They were simple and sweet and reminded her of her childhood. She had also attended a poetry workshop on Zoom and was trying her hand at prose-poetry.

She longed for her home-town, Bhopal in India, even though she had chosen to leave fifteen years ago. Traveled thousands of miles in search of some ground beneath her feet and some air to breathe, after a major heartbreak. Now she had left that ruin far behind. Her job as a journalist felt like being with friends creatively. She had found that patch of earth and created a little haven for herself. At 39, she was settled even if her parents worried she was not. A little flat in East Dulwich in London was home.

The tiny package arrived in a massive lorry. She opened the door even before the deliveryman had knocked on it. She pulled at the stiff brown case. It was a fight to set the contents free but finally the book was held in her elegant hands. All eight corners were soft and rounded. Turquoise blue and white decorative pencil-work on a sinister black background. An ornate profile of a young woman with her hair put up anointed the front and back cover. This book was worn. Like her, it had travelled. It was smothered in a familiar dusty odour.

She opened it to the first page. In a sparkly green feminine font, it read:

“For my darling husband Atul.

Happy 4th Anniversary!

Sometimes I feel like Caroline de Winter.

Love you,

Sonali.

4th March 1999”

In that second, it was not her book. It was his. Once again, he had appeared out of nowhere and snatched her calm. The last time he did this was when she was a college student, happy with her books and music. He was two years her senior. He had subtly got her to look up at him and at life, invited her to parties, long bike rides and picnics. Before she knew she was his girl-friend and surprisingly she enjoyed the role. He made her laugh. He was a preening peacock and she, a simple sparrow. But it worked. They would sing and laugh but after 3 years of that, he made her cry. A lot.

Lost and lonely, she had roamed various cities and continents for years and finally made peace with her solitude. Now, the reins of the past had loosened their hold on her. She could breathe.

She had avoided acknowledging the existence of those two names all these years. Now they were lighting a fire in her eyes. One name of her one and only boy-friend and the other of her one and only best friend. May be this book had absolutely nothing to do with them. There must be thousands of people with those ordinary names.

The book sat innocently on her coffee table. She looked at it as she would an unwanted guest. She looked away, wondering what to do next. She turned on  the kettle as if in automatic mode. As two cups of near-boiling water were being infused with Darjeeling tea leaves, she prepared herself for the turbulence ahead. She poured the tea into her Frieda Kahlo mug and sat down again.

Her delicate hands reached out for the book again and casually unfurled the pages like a pack of cards. It sounded like a bird taking flight. A book mark fell to the ground with a soft flick. She fished it out from under the sofa. A pale blue and white visiting card:

Mr Atul Tyagi.

Tyagi and Lal Associates

First Floor. Office number: 133

NKS Plaza. Char Street.

Bangalore. 200 006

Phone: Office:  +44 221 63939

             Mobile: +44 976146022

e-mail: amtyagi@tala.net

Oh no! After years of laboriously moulting out of his skin, here was an invitation back into the darkness of it. An invisible chord lay between them. She knew of it. He did not. Did she have to do anything with it? No. Did she want to do anything with it? Not yet. There was no point blasting an exhaust fan over the dust that had taken eons to settle. The smooth glossy card reminded her of his forehead that she had kissed a thousand times. She held its corner between the thumb and index finger of her left hand and rested her head on the right palm.

Sadness – yes. Regrets – no. Excitement – a little bit. Flummoxed – a lot. Cat-like-curious – oh yes! Was this a psychological mind-game? Were there hidden cameras in her apartment, like the Big Brother House to record her reactions to this? Was this a sheer co-incidence? There were 22 other used books to choose from. How did this one land up in her lap? Destiny? Randomness? Serendipity?

For old time sake, she had to say hello. They were grown-ups now. They had to let the past sit in the past. Should she call him or send an e-mail? She could always hang-up like a truant teenager if the voice at the other end sounded dodgy. An e-mail might never be answered. She could send him a formal text and arrange a time for a phone call. Less intrusive. Also, it gave him a choice to chicken out. She did not want him to have that choice. Not this time.

Hello. Tyagi and Lal Associates.

Hello

How can I help you?

Hi. I am Kavita. Is that Atul?

Sorry. I am Manish Lal, his associate.

It’s ok. I’ll call back later.

Can I convey a message?

It’s okay. Nothing important.

Are you Kavita … Saini? From his college?

Yes.  

Oh. I’ve heard so much about you. Don’t worry. All good. He’d be delighted to hear from you. He’s traveling right now but I can put you in touch with him.

Where is he traveling to?  

London. He’s on a business trip. All the work is on me now. That’s how I’m in the office so late. Finishing up. Where are you calling from?

It doesn’t matter. I don’t have any message for him. Sorry to bother you. Bye.

Wait. Please. There is something you must know. I am his husband. Yes. It took him years to admit it to himself. Please forgive him. It wasn’t easy. Sorry.

Click.

Be the Change

Be the change

RIP George Floyd.

The waves of raging violence in one form or another, in the street, on the TV, on Twitter, on Facebook, against the government, against one section of society or another. It is present everywhere I look. It seems to be the problem and the solution. Cops carrying guns to control gun-carrying people. Knees as weapons. Cries for mercy falling on multiple pairs of stone-deaf ears. Rich countries indiscriminately bombing poor ones in the name of peace, to bring them ‘liberty’. International leaders goading each other on to continue expanding their defence budgets.

I was born in a country of huge contrasts. It won its independence from the Brits, who ruled by the gun, under the leadership of Mahatma Gandhi, who lived and led by non-violence which was the core of Gandhi’s contribution to the world. For him nonviolence was the greatest force at the disposal of mankind, mightier than any weapon, superior to brute force. A living force that no one has been or ever will be able to measure the limits or extent of, just like love. In fact, he translated the Sanskrit word, Ahimsa (which literally means non-violence) as love.

True nonviolence is dissociated from fear. Gandhi felt that possession of arms is not only cowardice but also lack of fearlessness or courage. Gandhi stressed this when he said, “I can imagine a fully armed man to be at heart a coward. Possession of arms implies an element of fear, if not cowardice but true nonviolence is an impossibility without the possession of unadulterated fearlessness.”

The same country, India, classes some people as ‘untouchables’ and treats them as such. The discrimination against dark skinned people is ugly to watch. You only need to watch an Indian film and look at the mountains of money spent on the skin-whitening cream, ‘Fair and lovely’.

Saagar and I knew what it means to look different, be different. We both suffered in our own ways because of people’s instant judgements, inability to look beyond our skin and their downright unkindness.

Let’s teach ourselves and our children a new alphabet:

A – Abundance of love

B – Belonging / Brotherhood

C – Compassion/Connection 

D – Diversity

E – Empathy

F – Forgiveness

G – Giving / Gratitude

H – Harmony / Healing

I – Intimacy

J – Joy

K – Kindness

L – Listening / Learning

M – Meaning

N – Non-violence

O – Openness / Oneness

P – Peace

Q – Quest

R – Remembrance

S – Self-compassion

T – Trust

U – Unity in Diversity / Understanding

V – Victory over our inner demons

W – Wisdom

X – Xanadu (an ideal place of magnificence and beauty)

Y – You matter.

Z – Zeal for love and life.

Thank you Ma’am.

She was just over 4 feet tall but her voice boomed across the workshop as if it was arising from a big Bose speaker. She spoke, taught, lived, breathed Ikenobo, the oldest discipline in Japanese flower arranging, broadly known as Ikebana. 1400 years, to be precise. It was her life, her passion and she generously gave it to us, her students.

Initially I couldn’t figure out what I should call her. In India, I would have called her ‘Aunty’, but it didn’t seem right. Some called her by name but I couldn’t do that. I tried it but it felt wrong. She was nearly my mum’s age. I dug out the word ‘Ma’am’ from my college days, a term used to address female teachers. It felt right to me and seemed fine by her.  

She drew schematic diagrams of arrangements on a white board in front of the class, explaining the name, function, quality and significance of each component. She emphasised the relationship between different parts of an arrangement but mostly, she spoke of the importance of spaces between them.

Wood symbolized mountains while grasses and flowers suggested water. A natural landscape, in a single vase. It was a meditation of sorts, exploring the relationship between the sky, humans and earth, between the outdoors and indoors. It had philosophical representations of the past, present and future. It was about harmony and the laws of nature, a welcome break from the cacophony of London.

After Saagar passed away, she gently encouraged me to join her classes. She knew this art form would help. Mondays became exciting because they were the day of the lessons. Couldn’t believe how little they cost. It definitely was not about money. I joined this community of aspiring flower-arrangers who like me, were constantly baffled by how minor changes made by her, transformed our arrangements into spectacular creations.

Ma’am was a walking-talking Encyclopaedia on all things garden. She had looked after award winning gardens for most of her life. She knew wholesale flower markets intimately and could predict and cherish the floral offerings of every month, every season accurately. But last week, an unfortunate accident suddenly took her away from us, from this earth.  

“Not only beautiful flowers but also buds and withered flowers have life, and each has its own beauty. By arranging flowers with reverence, one refines oneself”, she would say.  

We will miss you and your finesse, Ma’am. My head bows to the space left by you. Thank you for helping me see beauty in everything.

Vite Vine

Darling Saagar,

You learnt your English in the UK from English-speaking people. I learnt it in fits and starts from Hindi/Punjabi/Bengali-speaking folk in India. It was not a surprise that you were only 10 when you took it upon yourself to start correcting my English. All the time.

“Saagar, please would you close the vindow?”

“The parent’s meeting is on Vednesday. No?”

“Where does the best Vite Vine come from?”

You would be all over the floor. What was funny? These were simple questions. In Hindi, there is an equivalent for ‘v’. None for ‘w’. The sound of ‘w’ is learnt. I learnt it and can apply it to everything except nouns. Must be a genetic aberration. I had a huge sense of achievement when I made you laugh, given my sense of humour was nothing compared to yours.

Other words that I spoke wrongly were – rebel (re-bell), adolescence (a-doll-essence) and such.

Sometimes I knowingly uttered incorrect sentences, so you could correct me, playing with your predictable pleasures.

“Bought a really nice t-shirt today.” you said.

‘What colour?’

“Not ‘what colour’ Mamma. It’s ‘which colour’.”

‘Ah. Right. What colour?’ I asked again with a crooked smile.

Rolling-up your eyes, shaking your head from side to side.

“Parents!”

Laughter.

We’re in lockdown at present, Saagar. Long story! I can’t help thinking how fab it would be to have you home. We would have so much time together to try new recipes, to exercise and laugh, play carom and do some gardening, relax and watch funny cat-videos and so on…

Time … tic-toc, tic-toc … gone forever.

My mind plays silly monkey-tricks with me. The rascal. I watch it. Holding my own, I am not getting carried away with it. I am being the witness (vitness).

You are here, with me always.

I love you.

Yours,

Mamma.

A phone call.

Last week we got a call to assess a patient for a possible transfer to ITU. Our team of three anaesthetists went along with all our kit and PPE. From a distance, he didn’t look too unwell. And he looked young. I hoped he wouldn’t need too much intervention. We donned out protective equipment and looking like aliens, entered his cubicle. I checked his name and date of birth. He was born in the same year as Saagar. After making a quick assessment, we decided that his breathing needed support. We spoke to him about getting him off to sleep so that we could place a tube in his wind-pipe and assist his breathing. We explained to him that we would transfer him to ITU for further care.

By this stage he was shaking, his eyes swollen with fear. He asked to make a call to his mum. We stood back while he called her. He held the phone to his left ear while oxygen hissed through his face mask. We waited, watching his face slowly relax, his fear melting into tears that dripped down his cheeks. After what seemed like a long time, he said bye to her, told her he loved her, composed himself and said he was ready to go to sleep.

It was like watching the dance of life and death. Love and separation. Help and helplessness. I was grateful and pleased that this mum and this son could connect at this crucial time.

Saagar didn’t have this luxury. He didn’t get to call his mother. No words of comfort fell into his ears. No tears of relief spilt from his eyes. Nobody offered him their understanding. I felt sorry for his mother too. She didn’t have a chance to say good-bye, to tell him that she loved him, that she would pray for him and that she wished him the very best.

When there is political will, governments can bring countries to a shrieking halt, the world can come to a stand-still.

When it is a physical illness, millions of pounds can be spent in seconds. New hospitals can be erected within weeks. Multiple trainings can be put in place for the front-line staff. Awareness campaigns are everywhere. What to do, what not to do, repeated endlessly. Retired doctors can be redeployed. National economies can be allowed to crash. Everything else can be put on hold.

When it is a mental illness, there isn’t enough money. There isn’t enough time. Not enough people. Very little expertise. No effective awareness-raising campaigns. No appropriate spaces. Not enough beds. Not enough research. The bottom-line is that there just isn’t enough respect for the fact that people with mental angst suffer the same, if not worse than those with physical ailments. That on many occasions they too, die alone.

 Its about Respect and Political Will.

The Sliding.

Ryan woke up at least twice every night to run to the loo. But last night he moved like a little whirlwind under the sheets. Sue slept through most of it but found it peculiar. She didn’t say anything, lest it disturb him but he disturbed her at least every hour without knowing it.

She woke up feeling tired at 6.30 am. It was a Monday morning. The day of the week didn’t matter much any more as both of them had recently retired. She as a head-mistress of a primary school and he as an accountant.

Their daughter lived in Liverpool with her boy-friend. Her job as a personal trainer at David Lloyds was less than they’d hoped for her. Her boy-friends spoke funny but for a living, wrote speeches for prominent people. The phony politicians who couldn’t even write what they wanted to say to the people they represented.

Sue put the kettle on and freshened up while it whirred. She put two green and gold Wedgewood cups and saucers on a tray along with a matching milk pot and a tea pot large enough to hold 4 cups. She entered the bedroom with the tray. Instead of sitting up in bed thumbing his phone, Ryan was flat on his back. His eyes red and fine vertical lines above his nose.

‘Morning!’ she sang, ‘You ok darling?’

With a smile, she placed the tray on his bedside table and placed her hand on his forehead.  

“Yes. I’m fine.” Said Ryan.

‘Did you sleep well?’

“Not really. The temperature in this room was all over the place. Couldn’t settle.”

The temperature was just fine, she thought but decided to stay mum.

‘Care for a cuppa?’

“Yeah. Sure.” Ryan raised his head off the pillow. An oval wet patch was imprinted on the white cotton pillow case. He quickly turned it around and stood it up against the cushioned head-board. She noticed but did not comment. She poured the golden-brown tea into the cups and added a few drops of milk for him. Over this first month of their retirement they had been falling into a nice little routine. Opening the day with a shared pot of tea was a special pleasure for them both. It made space for the rest of the day to slide into their lives.  

“What shall we do today?” she asked Ryan.

‘I miss my work. All the friends I had. My clients. The window in front of my desk. The 11 am coffee with colleagues. The laughter. I even miss the commute. I never thought I’d hear myself say that but it was nice. I miss all that.’

“Yes. I am sure. I miss my work too but not much. Shall we go to the garden centre and get some saplings? This is a good time for planting. The Organic Café does some nice coffee too.”

‘Let’s see. I might just enjoy the sun-shine in our garden today.’ He got up to visit the loo again. This was not like Ryan. He was the one who normally put ideas forward and she was the one who normally said yes or no.

As soon as he left the room, she put her cup down and stood up to get a closer look at the other side of his pillow. It was definitely damp. She peeled back Ryan’s side of the duvet. The bedsheet underneath him was certainly moist. It smelt of him. Only stronger. This was unusual.

Sue’s pulse quickened. She’d heard of people working really hard all their lives and then dying soon after their retirement. She shoved her silly thoughts aside and waited for Ryan to come back, trying to focus on the delicateness of the tea.

When Ryan came back, she was surprised to hear the puffing sounds of his breathing. His brow had started to glisten.

“Would you rather have a lie-in Ryan?”

‘No. I am ok. Nice tea. Don’t make an old man of me. I’ll be fine once I’ve had a shower. It’s funny. My left arm feels strange. Must’ve slept funny.’

Now she could hear her own heart pumping in her ears. But she kept it cool.

She managed a fake smile. A polite false agreement. She wanted to jump at the phone and dial 999 but didn’t want to scare Ryan.

“There’s no rush to have a shower. More tea?”

‘No. Thanks. I’ll get myself a glass of water.’

“Don’t worry. I’ll get it for you.” She jumped.

At the kitchen sink Sue stood like a statue, staring at the water pouring down the hole in the stain-less steel basin. Is today the day my life changes for ever?

She debated with herself on what to do next. A tug of war went on within her. Does he know he’s unwell? Is he really unwell or am I imagining this? Is that new virus in him? In our house? In our bed? Will he be terrified if I tell him what I think? Is he just having the blues? Or a heart attack? Or an infection? Or nothing at all?

She carries the glass of water back to Ryan. He glugs it back and slowly slides back inside his duvet. She walks around to her side of the bed, slips under the covers and lays down right beside him, holding him with both her arms, a little bit tighter than usual.

Like a couple of soft cuddly toys, they snuggle up. In that moment, she has all she needs. Ryan breathing, resting right next to her. Her tears meld into her pillow. The past and the future disappear. In that moment, life is whole and complete.

The good times.

Once again I found myself sitting in the waiting room at a Healing Centre in Wales. I sat facing a wall covered with effusive and colourful thank-you messages plus baby pictures. They were addressed to the acupuncturist who had helped these women become mums. I was here to connect with my son through the beautiful, Moya, whom I have seen twice before. She is compassion personified. Each time I have met her, I have found great comfort in her readings and felt close to Saagar. So, despite Storm Dennis, train disruptions, a brewing respiratory infection and a serious jet-lag, I made my way up in water-proofs and a big red polo-neck jumper.

The first thing she mentioned was Varanasi. A seat of learning. A place of pilgrimage, where the temporality of this human body is clear to see. Of course, Varanasi, where Saagar’s ashes are immersed in the Ganges, where we had a prayer ceremony with 5 priests simultaneously chanting and carrying out various rituals for 5 hours to help Saagar’s soul transcend peacefully into another realm. Where my ashes will go.

Then came a string of other places and memories: Playing catching-catch on a beach in Port Rush, stepping over multitudes of hexagonal stones at Giant’s Causeway, crossing the flimsy Carrick-a-rede bridge, the 3-day trip on a narrow boat one beautiful summer, shopping in New York, visiting his Uncle, Aunt and new-born cousin in Chicago, admiring the moon and stars through the big Velux windows in his large loft conversion space. All these sweet things came up.

He wanted to present me a Cherry blossom. Did that make any sense to me? Yes. Coming up to March, we would be using Sakura in our Ikebana arrangements, bringing nature into our homes. A very special time of year for this Japanese art.

Moya said he is peaceful where he is. He understands that sometimes I breath deep and hard to stay alive and sometimes it feels like I am breathing glass and sometimes I wish I could just stop. He understands. And he holds all these happy memories and places that he cherishes.

He’s reminding me of the good times. I need to look at them and cherish them much more than I do. They were ours. They will always be ours.

The ocean and me.

That was the winter of 2014-15. This is the winter of 2019-20.

This was the beach in Goa where I sat paralysed for weeks. Some days I didn’t walk or talk. For days, I peered into my laptop, trying to figure out the ugly intruder who had broken into our house and taken my everything, my son. I swam in the whys and hows of this tragedy that had befallen us. The fact that my life continued while his had ended baffled me. I struggled with how that could be and what was the meaning and purpose of what was left. What now? What now? The question marks sprang up incessantly.

Si was with me then as he is today.

In this time, life has revealed that there is no one answer, no single destination, nowhere to go, nothing to do. All there is, is unfolding. The Universe endlessly expressing itself through this beach, the moon, the sand, the pain and me.

After dark, the wave fronts approach the shore shimmering like sword edges of the cavalry, roaring towards me and then breaking apart into a playful white surf and disappearing into the sandy slope. Again and again. Same but different. In the navy blue of the night it appears as though the special effects team has spent hours to make it look like this.

The lukewarm sand between my toes. The dancing waterline swirling around my feet. My hand tenderly held in Si’s. The rhythmic breathing of the ocean. The ins and out of my breath. The moon, an oval light overhead. The sea breeze ruffling my hair. The hint of salt in the air. The humidity, same as that in my eyes.

A pause. A break. A blank.

A moment holding everything within. It’s all here.

Working from the heart.

I had taken the day off work. The nurturing, peaceful, green lap of Amaravati Buddhist Monastery at Hemel Hampsted was where I wanted to be. It was a day of rest, solitude, silent contemplation and meditation. Autumn was at its prettiest best and despite everything, it was time to receive beauty. Receive time.

It was the fourth anniversary of Saagar’s passing. The most difficult day of the year, despite my belief that time means absolutely nothing. But this day always stares at me like the enemy. A wretched, horrid, cruel, ugly thing. A brown sludge that I have no choice but to drag myself through.

Slowly, slowly … most of the day drew itself behind me. I returned home, gazing at the sky from the train window, still looking for answers. Still nothing. Just the unbearable pain of longing.

Switched myself back into practical mode, as the next day I was meant to be working. Opened my inbox and found an e-mail from someone called Dan.

“I hope you don’t mind me contacting you out of the blue like this, my name is Dan, I’m a third year medic at Aberdeen University and also the Vice President of the Anaesthetics Society. 

I actually attended your talk at the AAGBI conference this summer. I hope you don’t mind me saying, but I found it incredibly moving. The very day before I attended I had been diagnosed with Bipolar Disorder and was worried about how this would indeed impact on my studies and working career as a Doctor. 

After your talk, I met with one of the Consultants who was offering a ‘mentoring’ session where I discussed the recent diagnosis. She spoke to me about what I need to do to stay well, one of the things was accepting treatment, which initially I admit I was not that open to doing. 

Anyways, I find myself rambling on, I suppose I just wanted to email and introduce myself. If you have any advice for someone with Bipolar who is wishing to pursue a career in Anaesthesia then I would love to hear it!

I just saw an email which was saying that you are giving a talk in Aberdeen next week about this particular topic, which I certainly hope to attend! If you would be about afterwards and free for a coffee I would certainly love to meet you!

Best Wishes and sorry again for emailing like this out the blue!

Kind regards,

Dan.“

Another green moment – tears mixed with joyful smiles. What a way to end the day. What perfect timing.

We met in Aberdeen a few days later. He was all smiles. Friendly, generous and sensitive. We got on instantly. Had a nice long chat. He dropped me in his little red car to the airport. I told him I was hoping to write a book at some stage. He offered to help me with the research that might be needed.

Last week, I was back there in Aberdeen at Dan’s request, to run a 2 hour-long Mental Health Workshop for a bunch of medical students, junior doctors and researchers. It was a good day. I had to smile when Dan talked about Saagar as if he was an old friend.