Thirteen weeks

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.

Unspeakable.

Age: 82 years.

Sex: Male

Residence: Bed number 19. Intensive Care Unit.

Duration of stay: 70 days and on-going.

Last heard speaking 68 days ago.

Up and down with repeated pneumonias, rising and falling need for support with breathing and blood pressure, weeks of starting and stopping a plethora of antibiotics, kidneys pushed to their limits, sepsis coming and going, metabolic state constantly fighting off infections. This goes on and on and we, his family go up and down with him. In between spells of invasions by nasty bugs, he mouths words, some of which we can decipher and some we can’t. It’s excruciating on both sides when he gives up after a few times of trying to be understood.

“I want to speak.”

Last evening, he insisted silently, sitting up in his hospital bed. His lips firmly formed the shapes of those words. After a quick consultation with the doctor in-charge, we arranged a brief attempt to enable him to speak. We did the appropriate suctions, explained everything to him and blocked his tracheostomy manually with a thumb covered in a sterile glove, to enable the small amount of air in his lungs to leave through his vocal cords, which have not been used for nearly ten weeks.

This man who used to have a big voice, spoke four languages and sang sweet songs had been rendered wordless. In a somewhat broken, hoarse, unrecognisable semi-voice he whispered, “I am trying.”

There were tears. Lots of them. Of love and all the unspeakable stuff.

His eyes were two bright lamps in a poor man’s hut. Oh! To be understood!

For no reason at all.

Andretta is a small village in the foothills of the Himalayas. It has been calling to us for the past five years. We’ve been working towards becoming able to take it up on its invitation and finally, we are here.

I return to my country, a stranger. I am not that young lady who left and this land is different from what it was when she left twenty-three years ago. It is noisier, busier and dirtier. People and houses everywhere. The national highways used to run through wide expanses of green and yellow fields but now they are lined with messy shops, workshops and warehouses. Overweight people used to be a rarity but now obesity is commonplace, even in kids and village folk. The forests are thinner and the weather full of surprises. The number of extreme rain events has risen three-fold since the beginning of the last century, possibly due to a warmer Arabian Sea.

It was in the last century that I ventured abroad. The dreams that lived in my eyes then, are a mere story now. Those dreams had to be dashed, so I could wake up. My heart had to be shattered before it could learn to be full. I had to be completely humiliated, before I could be truly humble.

Maybe it was necessary.

Fifty-four days ago, my father walked into a hospital for an operation that he believed would improve his quality of life. He has been unable to leave his hospital bed since. Every time I turn from one side to another in my sleep, I am aware that my father can’t do that. He needs help with nearly every activity of life. He’s aware of his predicament and we all are helpless. This helplessness is an old friend from a few years back. Looking back, it might have been better if he’d not had the operation but we don’t know for sure and it’s too late now. It could be worse. I could be better. It could be different.

I wonder why things happen as and when they do? Is this a question worth asking or is it completely pointless? Some questions are unanswerable no matter how frantically the logical mind looks for answers. There are none.

This is how it is. For no reason at all.

Long shadows

A few months after Day 0, at a SOBS (Survivors of Bereavement by Suicide) meeting at the All Saints near Euston, I met a father who said, “Eight years” when I asked him how long it had been since his son died. I looked at his face as if he was the most spectacular and wondrous impossibility of the world. Is it possible to live as long as that after the death of a child? He was proof. It was. I had never seen anyone who had been bereaved that long, standing and smiling and speaking sense.

Last Monday I joined the 3 dads on the last leg of their long walk to Westminster alongside many people who want the government to add suicide awareness and helpful resources to the school curriculum. We walked and talked in the rain. I said ‘Nearly eight years’ in response to how long has it been since my son passed. I got the same look from a young mum recently bereaved. She stopped and looked into my eyes through the thick rain drops. Past and future, face to face. “Gosh! Does it get any easier?” she asked. It does, I replied, holding her hands.

All these years I have tried to keep Saagar alive in every way I could – writing, public speaking, teaching Youth Mental Health First Aid courses, advocating for young people, working with various people, charities, NHS, Churchill Trust and other organisations, making films and so on.

I have read other people’s accounts of loss, hoping to lessen my pain and deepen my understanding. The latest book I read was ‘The Year of Magical Thinking’ by Joan Didion. She says:

I know why we try to keep the dead alive: we try to keep them alive in order to keep them with us.

I also know that if we are to live ourselves there comes a point at which we must relinquish the dead, let them go, keep them dead.

Let them become the photograph on the table.

Let them become the name on the Trust accounts.

Let go of them in the water.

Knowing this does not make it easier to let go of him in the water.”

Eight years! No time at all.

Time is the school in which we learn.

Time is the fire in which we burn.”

  • Delmore Schwartz.

Entrances and exits.

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

She.

(Pen Vogler by John Burke. BP portrait awards 2017)

With all her worldly wealth, she could not purchase belonging. Especially to herself. Her eyes thirsty for tenderness. Her muscles tense with want, her skin hungry for touch, her lips a straight line of dissatisfaction.

She hoped a painter might find her in his brush strokes and capture her on his canvas. She paid him a mountain, so he could help her find out who she might be … find out if she could meet her real self. After many hours of sitting still, with her hands clasped together in her lap, she was tired. She was tired of perfectly painting her fingernails bright red, for the painter. She couldn’t wait to see what he saw.

The day came and the painting was ready to be seen by her. Her eyes bulged out of her head, eager to find the joy she so wanted to find in herself. All she saw in the fore-ground, was a golden dress sitting beside a golden yellow lamp shade. All she saw in the back-ground, was the austerity of dark brown walls and furniture. That was the gist of it. The thing she was dying to find was not there. It was yet to be born. Those clasped hands held the secret. She knew what she had to do – unlock the door with those lovely hands and leave … for some place, white, blue and green.

Thank you for noticing.

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

No words.

Two years back, it could not be screened as scheduled. After a long wait, last weekend it was, at Clapham Picture house where Saagar often went with his friends. People came from Leicester, Salford, Cornwall, Cardiff and Birmingham. Some, I had only ever seen on screen. Others, when they were school kids. They brought their sisters, spouses, friends and colleagues. They stayed for hours afterwards, talking about themselves in a way they never had. They fell in love with Saagar’s big brown eyes and mischievous smile. They saw what a treasure had been carelessly lost. Everyone felt something. Many had no words but there was a profusion of overdue hugs all around. Many felt they knew him even though they had never met him. Some introductions were made to link up the leaders from various sectors of society so they could form stronger and safer networks.

That woman in the film was not just me. She spoke for the fifteen families in the UK, who are plunged into this harsh reality every day. More than 6500 every year.

That young man in the film was not just Saagar, but everyone who has ever blamed themselves for their troubles and felt shame for things that have happened to them, hiding behind their beautiful smiles. Unseen. Unheard. Each one who lost their tribe and couldn’t find a way back.

These were not just Saagar’s friends, but all those who are left behind, trying to figure out how this could happen to someone they loved. Wondering what they could have done then and what they can do now.

This film laments a future lost. It mourns silent suffering. It also illuminates a path that appears out of darkness. It also celebrates love and smiles. It also gives us permission to soften, lighten, loosen. It breaks open our hearts so we can hear the unspoken pain that lies behind the mask of another face and our own. It makes us one.

This is what it means to be human. Here, on this beautiful Earth, there is no other. Only us. Not us and ‘them’. Just us.

PS: International film awards: Eight.

‘1000 days’ is made by Me and Thee films for educational purposes. Hence it is not yet freely available on social media. It was screened in the ‘Lived experience’ section at Middlesbrough, for the Hartlepool and Stockton Safeguarding children’s Partnership and South Tees Safeguarding Children’s Partnership Conference on the 12th of July. It made a profound impact on roughly 350 attendees, motivating them to make individual and collective change so as to protect young lives and their happiness. Will keep you posted on the opportunities to watch it. Thank you for your love and support. Please do share any constructive ideas/ thoughts you may have for the film in the comments section.

What are the chances . .?

It was Tuesday, not my usual day to be working at St Thomas’ Hospital.
It was lunch-time and there was time enough for a proper break, which was extremely rare.
I was able to physically leave the Theatre complex for fifteen minutes, which was usually impossible.
I wanted to clear my head, so I went to the cafe, looking for a seat by a window. I was in my raspberry scrubs, wearing my most expensive necklace which is a green lanyard with my ID batch. The round table by the french doors had three chairs, of which one was occupied. I asked the older gentleman if I could share his table and he didn’t mind. As I sat down I noticed that his left arm was heavily bandaged. My curiosity got the better of me and I asked, ‘What brings you here?’
He looked straight at me and replied, “I tried to die.”
‘I am sorry you found yourself in that impossible place. Must have been terrible. Are you getting the support you need?’
“Yes. They’ve been very good here.”
‘I am glad.’ I paused to wonder if I should tell him but the words left without my permission.
‘You know, I lost my son to suicide a few years ago.’
His gaze connected with mine like a laser beam and his eyes moistened.
Softly, almost apologetically, he stated “When you are in that place, you can’t think about other people.”

Pause.

“Here comes my wife.”
Holding two paper-glasses and a brown paper bag, she joined us and placed one of the glasses in front of him. She took out a Jubilee cupcake from the bag to share.
“Have you traveled a long way today? I asked, shifting gear.
‘Sussex. Straight train. Not too bad.’
“Beautiful part of the world!”
‘Yes. But we lived in Australia for eighteen years which was really pretty. We came back to be with the children.’
“Nice. I wish you all the very best. I must get going now.”

‘Us too. Our appointment is in fifteen minutes.’ she said.
‘You take care’. He said, making that eye-connection with me again.
“You too.” I looked straight at him, nodded, smiled a polite smile and walked away.

(Resources for attempt survivors, their families and friends:

https://www.sprc.org/livedexperience/tool/resources-suicide-attempt-survivors-their-families-friends)

God bless America.

Following the Sandy Hook school shootings in 2012, the Conservative commentator Anne Coulter provocatively proclaimed that “Guns don’t kill people. The mentally ill do.”

“The United States sees an average of 32 000 handgun-related deaths per year (as per this paper published in 2015), and firearms are involved in 68% of homicides, 52% of suicides, 43% of robberies, and 21% of aggravated assaults. Far from the national glare, this everyday violence has a disproportionate impact on lower-income areas and communities of color, and is widely held to be the cause of widespread anxiety disorders and traumatic stress symptoms”… the stigma linked to guns and mental illness is complex, multifaceted, and itself politicized, in as much as the decisions about which crimes US culture diagnoses as “crazy” and which it deems “sane” are driven as much by the politics and racial anxieties of particular cultural moments as by the workings of individual disturbed brains. Beneath seemingly straightforward questions of whether particular assailants meet criteria for particular mental illnesses lay ever-changing categories of race, gender, violence, and, indeed, of diagnosis itself.”

“Persons in the United States live in an era that has seen an unprecedented proliferation of gun rights and gun crimes, and the data we cite show that many gun victims are exposed to violence in ways that are accidental, incidental, relational, or environmental. Yet this expansion has gone hand in hand with a narrowing of the rhetoric through which US culture talks about the role of guns and shootings. Insanity becomes the only politically sane place to discuss gun control. Meanwhile, a host of other narratives, such as displaced male anxiety about demographic change, the mass psychology of needing so many guns in the first place, or the symptoms created by being surrounded by them, remain unspoken.”

“Mass shootings represent national awakenings and moments when seeming political or social adversaries might come together to find common ground, whether guns are allowed, regulated, or banned. Doing so, however, means recognizing that gun crimes, mental illnesses, social networks, and gun access issues are complexly interrelated, and not reducible to simple cause and effect. Ultimately, the ways our society frames these connections reveal as much about our particular cultural politics, biases, and blind spots as it does about the acts of lone, and obviously troubled, individuals.”

Ref: American Journal of Public Health. 2015 February; 105(2): 240-49.

Mental Illness, Mass Shotings and the Politics of American Firearms by Jonathan M. Metzl, MD, PhD and Kenneth T. MacLeish, PhD

PMCID: PMC4318286

PMID: 25496006

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4318286/