stories

Thirteen weeks

Posted by

13

Date of admission: 2nd Sept 2022 (Friday)

Date of Surgery:     5th September 2022 (Monday)

Date of demise:      2nd December 2022 (Friday)

Length of hospital stay: 13 weeks (91 days)

82 years old gentleman with no significant medical history was admitted for an elective Anterior Decompression of Cervical Canal Stenosis. He wanted to regain his confidence in walking and return to playing golf. He was not on any regular medications. He was not overweight, diabetic or hypertensive. He had no history of heart or lung disease. He lived independently with his wife in their flat on the second floor of a building that had no lift. He went out at least once or twice every day without much difficulty. He was an ardent and proficient bridge player. He drove his car to a friend’s birthday party one week before he was admitted to hospital.

He underwent an uneventful surgery but afterwards he lost power in all his limbs. They took him back to re-operate and make more space for the spinal cord that had swollen up, according to the MRI. That didn’t make any difference. His lungs were unable to work properly as the muscles of his diaphragm became weak. The domes of the diaphragm separate the chest from the abdomen. They play an important part in effective breathing and coughing.  Yes, surprisingly, the nerves to the diaphragm, originate from the neck (C3,4,5). They stopped conducting electricity. His lungs became unsupported.

His doctors said he’ll get better. It was just a matter of time. We needed to be patient. He needed help with his breathing so his windpipe was hooked on to a machine with numbers and waves and graphs and bleeps. He could not speak. No air came through his vocal cords.

Over the next few weeks he regained the sharpness of his mind and found that he was unable to breathe or speak, move or eat, turn from side to side in bed or have any control over his environment. He couldn’t really tell if it was day or night. The machines in the ICU made mad beeping sounds throughout the day and night and no one cared.

Patience wasn’t one of his best qualities but he was patient. Over the next few weeks he regained some strength in his forearms, enough to wave us hello and bye. Enough to blow us kisses and indicate that he was enjoying the music we were playing for him. Enough to bring his hand up to my ears and mouth the words “Nice ear-rings.” He learnt to communicate through his lip and arm movements. He said thanks to everyone who came to see him. He also said, “I love you” more than ever before. He smiled a lot despite his predicament.

His younger son is a writer and a storyteller. He told him a story of two well-known writers of modest means who visited a super-rich investment banker about something. In conversation the banker said he had great wealth, what did these two measly writers have? One of the writers said, we have something you will never have. “Really. What might that be?” He asked with a smirk.

“We have enough.”

After a moment, this patient father on Bed number 19 formed these words with his smiling lips, “I have enough.”

His lungs got infected five times in three months and the morale of his family went up and down like a yo-yo with him. No one knew what would happen next. In between, there were good times – going for a spin on a wheel chair, bowing to the statue of Buddha down the corridor, having bits of tomato-ketchup-flavoured-pringles with tiny sips of Coke, watching sparrows on frangipani trees. But this was not his chosen way of life. He had had enough. His heart had had enough. It stopped. The time to say good-bye left his doctors and nurses in tears too.

Ninety-one days of pure love and deep suffering. The former remains while the latter is done.

May there be peace for all beings everywhere.

“What will survive of us is love.” – Philip Larkin.

Random stuff

Posted by

0

After many years, things are being taken out of cup-boards and off shelves, turned inside out and properly looked at. Dusty books, clothes, folders, boxes and sachets. Some familiar fragrances are escaping and some old scenes are playing out on the screen of the mind. Bits of stuff slipping out of other stuff and falling to the ground with a clink. Some stuff that was believed to be misplaced is being placed. Some that was believed to be forgotten is being revisited.

Sample 1

A nappy pin. Special feature – A white safety cap to prevent accidental opening up while the baby has his cloth nappy on. Commonly used in India and other developing countries. Original owner: Baby Saagar.

Sample 2

A business card. Special feature – Simplicity. An invitation to music and joy. Original owner: Saagar.

Sample 3

A Crisis Plan. Special features – Not worth two pennies. Highly ineffective. Not accompanied by a conversation. No detail. Not individualised. Not created in partnership with the patient. Not an alive document. Does not mention anything more than ‘self-harm’. Doesn’t tell us what ‘Crisis’ looks like. Doesn’t identify any helpful distractions, activities, friends or family. Doesn’t appear to know the patient, for example, a key fact – does this person have a key worker? Does not express any understanding or compassion.

Commonly used in developed countries.

Oops! The name of the GP surgery is visible. It doesn’t matter. It closed down years ago. We were it’s last few unlucky patients. Owner: Saagar Naresh (1994-2014).

(Resource: Safety Planning is essential to safety: https://stayingsafe.net/home)

Home

Entrances and exits.

Posted by

2

The two little lads were inseparable. Saagar and Rohan. They cycled together all evening after school and kicked a ball about for hours. They had dinner at each other’s houses. They created snowmen and played with snowballs together. They even shared a bath every now and then. Luckily, they lived right next to each other and their parents were friends.

At Ulster Hospital in East Belfast, the staff accommodation is a set of six flats. Rohan‘s family lived in the one just below us. His mum, Shruti, was the best grower of indoor plants. A gentle, sweet lady. She was also a doctor but at that time, was not working. Over time our families became close friends and continued to visit each other even after we moved to London and they moved to the north of England. If you ask me to name my oldest friends in the UK, Shruti’s name would be on top.

Eventually Shruti started working in Psychiatry and seemed to enjoy it, even though the exams were a struggle as they are for many of us, when they must fit somewhere in between work, kids, husbands, homes, pets, friends, sleep and homesickness.

When Saagar was diagnosed with Bipolar disorder, I needed to speak with her. I needed her. I asked her by text what time would suit. She said she’s call me after work and she did.

“Hi Shruti. Thanks so much for calling.”

‘No problem. I am driving so we may get cut off. I’ll call you back if that happens.’

As soon as I started speaking it got cut off and she called back and the same thing happened again. And again. And then she didn’t call back.

When Saagar died, she came to see us the very next day with her husband, utterly shocked.

A month later I needed to connect with her again. She said she’d call me back after work. She called while driving. She had to pick someone up from somewhere or drop someone off somewhere. She was on the move. On – Off – On – Off : our phones connected and then rudely disconnected mid-sentence and stayed disconnected for seven years.

Two days back a message arrived from Shruti on Whatsapp saying, “Please join us and bless the couple.” Rohan gets married soon. A nice little electronic invitation to the reception was posted underneath the message. The invitation wasn’t for anyone in particular. It had no names on it. I can’t be entirely sure it was for us.

I am happy for the family and for Rohan. Wishing them all possible happiness, I RSVP’d with apologies for being unable to attend. There’s nothing here and let’s not pretend there is. I felt sad for a little while at this loss of a valued friendship, but not for long. This is an opportunity to let go. Yet again. If there is one thing I want to be skilled at, it is to keep letting go, remembering what the Bard of Avon said – ‘All the world’s a stage, and all the men and women merely players: they have their exits and their entrances …’ I get it.

“I would like to live

like a river flows

carried by the surprise

of its own unfolding.”                                    

– John O’Donahue

Thank you for noticing.

Posted by

0

She was listed for a minor surgical procedure on my list. I called out her name in the waiting area and escorted this pleasant, middle aged lady into a cubicle for her pre-anaesthetic check-up. We both sat down at right angles to each other. She had an unmissable racoon’s eye on the right side of her face. I looked again. Just to be sure. It was there in its fading pinky-blueness. She was in hospital for a totally unrelated reason but I ventured into asking, “What happened here?” pointing to the eye.

‘Oh. I had a run-in. Couple of weeks ago.’

“A run-in with what?”

‘You know … It’s okay. I don’t want to talk about it.’

“Have you spoken to anyone about it?”

‘Yes. I am okay. I really don’t wish to speak about it.’

“That’s fine. How are you doing today?”

We went ahead, staying focused on preparing her for the upcoming procedure.

I took a moment to call the Safeguarding department of the hospital. They said that it was normal for people suffering abuse, to not talk about it for a long time. They advised us to signpost her verbally. A written set of resources might make her more vulnerable, if discovered by the wrong set of hands.

Two women are killed by a partner or former partner every week in England and Wales.

One in five people suffering domestic violence will plan or attempt to take their own lives.

One in eight of all female suicides and attempts in the UK are due to domestic violence and abuse. This equates to 200 women taking their own lives and 10,000 attempting to do so due to domestic abuse every year in the UK. That’s nearly 30 women attempting to complete suicide every single day. 

Men endure domestic abuse too. This can include physical violence, as well as emotional and psychological bullying, sexual violence or financial control and abuse. 

It is living hell. An invisible prison. Isolating, with no one to confide in.

It takes great courage to speak. It’s often ignored. Many suffer in silence.

Survivors do come in contact with health and social services but disclosure is difficult.

If done right, it is life changing. Appropriate response is invaluable.

Front-line staff must recognise signs and highlight issues.

It is important to ask and act.

After her procedure, I went to see her in the Recovery room.

“Have a nice evening.” She said. “Thank you for noticing.”

Resources:

https://www.rcn.org.uk/clinical-topics/domestic-violence-and-abuse/general-resources-and-support

https://uksaysnomore.org/get-involved/ask-for-ani/
https://www.mankind.org.uk/help-for-victims/types-of-domestic-abuse/

… and your name is?

Posted by

2

S A A G A R.

In Delhi, it was simple and sweet.
In Belfast, it was a problem. It had to be pronounced slowly with exaggerated lip movements and spelt out clearly. Still, it was uttered in all kinds of ways – Segaar, Sega, Saaga, Sags, Sagsy-wagsy. It is after all, a proper noun. “As long as you call him with love, you can call him anything.” I would say with a smile. But of course, it was his name. Not mine.

At the age of 7, one day he came home from school and said, “Can’t you change my name to Aran or something?” I felt for him but laughed. What else could I do? I asked him if something happened at school that day, if someone said something hurtful and he just picked up his soft grey elephant and cuddled it.

I told him the story of his name. I was 24 when I got married. My in-laws lived In Chennai. We visited them a few months after the wedding and one evening we all visited a place called Besant Nagar beach. That was the first time my eyes fell upon the expansive ocean. On the map this water body had the boring label, Bay of Bengal. The vision of a dark blue shimmer below meeting a pale blue glow above in a clean, delicate, straight line made everything else disappear. Its calm, its rhythm, its enormity, its subtle dance, its grace and openness pulled me in. All conversation faded away and there I was, completely soaked in the bliss of the ocean. My soul soothed. My body relaxed. My eyes quenched. My heart happy. I was in love. In that moment, I knew that if we ever had a son, he would be called, ‘Ocean’: Saagar. I reminded him that his name was Saagar because his heart was as expansive and as beautiful as the ocean. He smiled and gave me a tight hug.

As he grew older, he came to own his name. He came to live it. The waters of this ocean ran deep. They appeared placid on the surface but strong currents ran underneath. All I saw was the steady flow of gentle waves, rhythmically lapping against the shore through the seasons. It oscillated with the moon but the high tide was never too high and the low tide was never too low, until one day it was.

Come home, my darling.

Posted by

2

I still hear the key turning in the door from the outside and you stepping in. Can you believe it? I still see your face, darkened by the sun. Dressed in your cricket whites, you drag your massive cricket-bag-on-wheels behind you by your left arm.

“Did you take the sun-screen with you?” I ask.

“Yes, it’s in the bag.”

“Did you actually put it on?’

 “Mamma, I’m hungry.”

I still wait for you to join us for dinner. I cook the foods you like, especially on your birthday: spinach-paneer for mains, chocolate mousse for dessert. I wonder what you’d be doing in this realm if you were here. Job? Girl-friend? How silly! Isn’t it? I can’t help it. It’s involuntary. It’s got something to do with the heart. With longing. With missing. With love. It’s not supposed to make sense. You would have had a good old chuckle at my expense if you were here. But you are not and I am. How random is that?

I still remember the first time I felt you elbow-ing or knee-ing me from inside my tummy, as if we had an inside joke between us. I remember holding all three kilos of you in my arms for the first time. I couldn’t believe you were for real. You were all mine. Now my arms ache with emptiness. Is this real?

Do you miss me sometimes?

Happy birthday my darling.

Heaven

It will be the past

And we’ll live there together.

Not as it was to live

But as it is remembered.

It will be the past.

We’ll all go back together.

Everyone we ever loved,

And lost, and must remember.

It will be the past.

And it will last forever.

                      – A poem by Patrick Phillips, on the New York subway.

(“Ghar aa” is a Hindi phrase that means “Come home”)

Two lessons

Posted by

0

“He loved me in the purest sense and I loved him. That’s how he kept me alive.” says Marsha about Ted, a catholic priest.

This relationship taught her two important things that she applied to her work as a therapist for seriously suicidal people. She wrote about these things and taught them to her students, the future generation of therapists.

  1. ‘I was unable to say thank-you then. Now I can.’

If you’re giving unconditional love to help someone cope with the hell they are in, if you’re holding them emotionally and physically, don’t interpret their absence of ‘thanks’ as a sign that you are not giving them what they need. You probably are.

2. ‘Keep loving them.’

When someone sees no point in living, they are like someone walking in a mist. They don’t see the mist. They don’t see that they are getting wet. If you’re walking with them, you may not see it either. But if they have a pail of water, you can collect the water that was mist, in it. Each moment of love adds to the mist, which adds to the water in the pail. By itself, each moment of love may not be enough. But ultimately, the pail fills up and the person in hell can drink that water of love and be transformed.

Like Marsha, I know this to be true. I’ve been there and drunk from that pail.

(Inspired by Marsha M Linehans’s book: ‘Building a life worth living’.)

The time is always Now.

Posted by

1

Once upon a time there was a beggar. He sat at a street corner, pleading for scraps. Anything – pennies, food, clothing. For thirty years, he had lived in dire poverty. One day a young man came along and asked him, “What is it that you sit on?”

“It’s an old wooden box.” mumbled the beggar.

‘Shall we have a look inside it?’

“It’s not worth looking at. I found it in a rubbish heap years ago.”

‘Ever looked inside?’

“No. What’s the point? There’s nothing in there.”

‘I can help you dust it down if you like.’

“Can you spare some change for me please?”

‘Yes. After we’ve looked at the box you sit on.’

“If you insist…”

They took the rotten old blanket off the wooden box and managed to pry it open. With utter disbelief, astonishment and elation they saw a heap of glittering gold-coins within.

While we look for scraps of pleasure, fulfillment, validation and security outside of us, the true wealth of deep unshakable peace and the radiant joy of Being lies within us. Inspired by “The Power of Now”, a book by Eckhart Tolle, I’ve been practicing making this moment the focus of my attention, surrendering to what is and saying ‘yes’ to life, noticing the direct relationship between inner resistance and pain, observing the subtle life-force that flows through my body, witnessing my emotions arise and cease as sensations in my chest and tummy. I have learnt to trust myself. I have found glimpses of freedom from my mind and felt my presence as one with the Universe. Who would’ve thought this possible?

Earlier this week I had the honour of sharing some of the theory, practice and research on this subject through an on-line presentation entitled “Making Friends with Now”. Many thanks to The Compassionate Friends for making this teaching accessible to many.

Making Friends with Now: https://youtu.be/TUC6PQ3l-Ls .

‘

A report and a film.

Posted by

1

A report published last month by National Child Mortality Database (NCMD) identifies common characteristics of children and young people who die by suicide between 1st April 2019 and 31st March 2020. It investigates factors associated with these deaths and makes recommendations for policy makers.

Every child or young person who dies by suicide is precious. These deaths are a devastating loss for families and can impact future generations and the wider community. There is a strong need to understand what happened and why, in every case. We must ensure that we learn the lessons we need to, to stop future suicides.

Key Findings:

-Services should be aware that child suicide is not limited to certain groups; rates of suicide were similar across all areas, and regions in England, including urban and rural environments, and across deprived and affluent neighbourhoods.

(No one is immune.)

-62% of children or young people reviewed had suffered a significant personal loss in their life prior to their death, this includes bereavement and “living losses” such as loss of friendships and routine due to moving home or school or other close relationship breakdown.

(Saagar was unable to return to his life at University due to a new diagnosis of a mental illness.)

-Over one third of the children and young people reviewed had never been in contact with mental health services. This suggests that mental health needs or risks were not identified prior to the child or young person’s death.

(Saagar had been in contact with Mental Health Services but they discharged him as soon as he showed signs of improvement. They did not follow him up. His GP was unable to identify his high risk of suicide despite his Depression scores being the worse they could be for at least 4 weeks.)

-16% of children or young people reviewed had a confirmed diagnosis of a neurodevelopmental condition at the time of their death. For example, autism spectrum disorder or attention deficit hyperactivity disorder. This appears higher than found in the general population.

(Saagar did not.)

-Almost a quarter of children and young people reviewed had experienced bullying either face to face or cyber bullying. The majority of reported bullying occurred in school, highlighting the need for clear anti-bullying policies in schools.

(At his Primary school in Belfast, his peers called him ‘Catholic’. He didn’t know what it meant but he knew it was not right. This went on for more than a year before I found out. When I spoke to his class teacher about it, she denied any problem.)

The film ‘1000 days’ tells us about Saagar and what we have learnt from his life and death. I am not sure what or how much the policy makers and service providers have learnt or changed but we have learnt and changed a lot and here we talk about that. The film is presently available on-line at the Waterford Film Festival (Short Programe 6), till the 15th of November at the link below. Please take 20 minutes to watch it if you can. You will learn something too. Each one of us can make a difference.

https://waterfordfilmfestivalonline.com/programs/collection-jlvwfxb8ctq

Suicide in Children and Young People

Mum’s not the word.

Posted by

0

He didn’t want to go. The new school was an hour’s drive from home. His bags were packed. Each piece of clothing had been labelled, “Baxter 289”. Each set had been neatly marked and packaged – rugby, cricket, football. He was getting ready to leave for the most prestigious Boarding school in town. Nothing less would do for a seven years old lad from such a good family as his. It was for his own good. This precious boy needed a proper education, even if he had to be separated from his sweet mum, wrenched away from his big house on the hill and the fields all around, his playground. This was unquestionably the right thing to do and it was being done. They would make a proper young man out of him. 

His mum knelt beside him in his room, combed his curly brown hair back from his forehead and kissed him there, gently. She looked at his freckled face and spoke apologetically, “I’ll see you at the weekend my darling.”

“I don’t want to go Mum.” He said, looking straight into her big blue eyes.

“I know sweetheart. But once you get there, you’ll have so much fun. You won’t want to come home” she said.

He looked at her face, his eyes now pleading. She felt an ache in her chest and looked down and away at the green Persian carpet.

“Don’t send me away. Please. I promise to be good.”

“My sweet, sweet child. Your dad only wants what’s best for you. Let’s not keep him waiting in the car.”

She held his hand and walked him out into the sunny afternoon of that last Friday in August. The sun was keeping the car warm even though all the windows were open. The day looked like it ought to be a happy one.

It was never the same again.

Forty years later.

He wanted to come home for Christmas. The Government had locked everyone in their homes because of the bugs. He lived in the big smoky town full of bugs. She still lived in her lovely big house on the hill in the open, clean and green countryside.

“It’s not as bad as they make it out to be Mum. We are well and strong and so are you. Nothing will happen. Don’t worry.”

‘I do worry darling. Let’s meet once this season of calamity is over.’

“I would really like to spend Christmas with you.”

‘Yes. That would be nice but I am not sure. The government has not given permission yet.’

“They really should. If they don’t, that would be more of a political decision than a scientific one.”

‘The Government only wants what’s best for us. Let’s not disobey the rules.’

That sounded familiar. He was seven again.

— — — — — — — — — — — — — — — — — — — — — — — — — —

Ref: How early maternal deprivation changes the brain and behavior? by Masa Cater and Gregor Majdic

EJN – 18 April 2021: https://onlinelibrary.wiley.com/doi/10.1111/ejn.15238