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.

Come home, my darling.

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”)

Yummy!

It would be a bit much to say they are friends. But they are very fond of each other and meet up as often as they can which is about twice a year. They both care deeply for young people and support each other’s work. One is a dedicated mother of five. Keeps a beautiful house and garden. Cooks the best food. Sews gorgeous clothes and looks amazing. The second woman has one child who stopped living a few years ago. She doesn’t care much about her house or garden. Can’t use a sewing machine. Doesn’t pay much attention to her appearance.

The second woman appreciates the first one’s invitation to lunch. They sit at the dining table on top of which appear five large aromatic dishes straight from the oven – roasties, grilled carrots and broccoli, kale chips and baked salmon marinated in exotic spices.

As they settle down with their plates, the first woman starts “My Anne has been challenging since she was little. When she was six and we lived in South America, she got it in her head that she wanted to make a cloth tent. We went to the shops and she chose the materials in the green colour she likes. I put it together the best I could and then she wanted buttons and ribbons to go on it and I did all of that. When the tent was ready, I put it up in the living room before she returned from school with great anticipation. She took one look at it and declared “I no like.” She kicked it. It went lopsided and she went up the stairs to her room.”

“My Mike is dreadfully over-confident. He can charm anyone into telling him their secrets. He can make anyone laugh ….. And my Noel! He’s a big architect in Leeds and I love his girl-friend. She is so down-to-Earth. I am so glad they found each other …. And when they asked me what I wanted for my birthday …. And when we all went on a holiday ….. And when they got engaged …. And my Lisa! She is such a good designer. She comes up with original patterns for her tops and I stitch them for her. She carries her dresses like a model …. And my youngest… Oh! He’s full of ….”

The second woman places her attention on the delicious meal. She has no invitation to speak.

It changes. And changes again.

Over and over I asked myself – Now what? Now what? What happens after a severance such as this? How long do one’s bones bleed? Do the tears ever finish? What does ‘recovery’ look like? Is it even possible? How does one keep placing one foot in front of the other? Where is the road? Where does it come from? Where does it go? How long and meandering is it? When does the screaming in my head stop? How long can I keep up the facade? Pretend to be sane? Is this what a new diagnosis of a terminal illness feels like? Is forgiveness possible? Self-forgiveness? Acceptance? Surrender? All these big words! Surrender what? To whom? Who am I now? What do I do?

No answers. Silence. The tilted earth keeps spinning around its imaginary axis. It keeps cradling me. The sun stays at the center of its orbit. My son stays at the center of my being. My breath keeps coming and going. I grow new eyes. My bones carry my weight even though they bleed. The road appears under my feet. It reveals itself one step at a time. Rumi and Khalil Gibran come and hold my hand. The screaming softens. The wall of bricks that was my body, loosens. I come to know the terror and the joy of being insane, catch glimpses of being free. Respect for those who went before and sadly others, who follow. I stop fighting with the big words and keep it simple. Watch. Observe. See. Open. Let the gash in my heart, allow the light in.

A recent talk for The Compassionate Friends, a charity dedicated to supporting bereaved families.

Logotherapy

It was late 1930s. He was a young man in love. She was a young woman who was delighted to be asked by him. They were married. Soon she was to be a mother. But the clan they belonged to were not allowed to procreate. She was made to abandon the baby even before it was born. They both were sent to different concentration/death camps. But their love story did not end there.

Despite shoveling snow with no shoes on, going for months without proper food, constant beatings and humiliation, not knowing which instant he would be walked to his death, he carried on loving her. He did not know if she was dead or alive but he loved her every second. He hoped to see her again. His longing kept him alive.

Four years later, he was freed and he found out that his sweetheart had passed away soon after their separation, at the age of 24. His father, mother and brother had met the same fate in that ugly assault of humanity on itself. His sister had survived and moved to a faraway land.

Viktor E. Frankl was a Psychiatrist. He took 9 days to pen down his learning and thoughts which became a book – ‘Man’s Search for Meaning’ that sold millions of copies all over the world as it helped them transform their suffering .

He pioneered a new way of counselling patients called Logotherapy or ‘meaning-based-therapy’. When asked of the difference between Psychoanalysis and Logotherapy, he said, “In Psychoanalysis the patient must lie on a couch and tell you things which sometimes are very disagreeable to tell. In Logotherapy the patient may remain sitting erect but he must hear things which sometimes are very disagreeable to hear.”

It is a future focussed approach through which the patient is reoriented toward his unique and specific attributes aligned to a purpose which can be fulfilled by him/her alone. It is based on the premise of freedom – the freedom to choose our response to our experiences, the freedom to choose the stance we take when faced with a difficult and unchangeable situation.

Over the last 5 years I have read Frankl’s book at least 5 times, each time deriving new inspiration. Last week I had the good fortune of being able to share some of those insights on-line with a community close to my heart. The Compassionate Friends helped me discover that Frankl’s love story will never end. It is interwoven into yours and mine and with the love-stories of those yet to come across it.

Food, water, shelter and clothing.

That’s what it’s all about. Isn’t it? Our most basic needs.

For some, who were comfortable, these basics are threatened in the current climate. For some they have constantly been under threat. For the lucky ones, all is well. For now.

The fact remains that food needs to be grown by someone. Seeds need to be sown and nurtured. Given the right amount of nutrients, sun and water. Given time to mature and then harvested. Like Midas, even if everything else was made of gold, we could not eat it. Even if we put hundreds of satellites in space, we need our basic needs met.

Over the past few months I have appreciated growing a few things from seed. Sunflowers, mint, coriander and sage. Not enough to keep me alive but enough to give me a smug feel of being someone who grows stuff. I have little trays laid out by the windowsill and they fill me with pride each day they reach out for the sun, a few millimeters more than yesterday. What must it be like to be a real farmer!

In India, more than 11 thousand farmers ended their lives in the year 2016. Too much rain. Too little rain. Aberrant weather. Poor quality seeds. Exploitative middle men. Illness in the family. Monsanto. Easy access to pesticides. False promises of relief measures, incentivising a farmer suicide. The government promises money but fails to deliver again and again. It then blocks articles and videos that try to make this information public.

Kheyti is an organisation that helps small farmers design and implement low-cost farming interventions. “Greenhouse-in-a-Box” is a low-cost greenhouse bundled with end-to-end services. This greenhouse fits in 2-5% of a small farmer’s land, protects crops from environmental risks and grows 7 times more food using 90% less water.

This prolonged lockdown is going to affect many individuals and small businesses. Many are starting to worry about their very basic needs. Uncertainty, insecurity and the feeling of being stuck is rising everyday. Helplines are receiving more calls. Food banks have had to expand beyond capacity. The indirect and unintended consequences of the pandemic might be worse than the direct and predicted ones. As incomes fall away, despair in our communities will rise further.

Each of us needs to think of one person we know whose income might be affected by this and call them. We need to think of one person recently bereaved and call them. Not text. Not e-mail. Phone call. Speak. Directly. Ask questions. Connect, have a chat, come up with ideas and creative answers. Signpost to resources. Reassure. Give hope. Together, figure it out.

This too will pass but before that it will test us. All of us.

Kooth Infographics – suicidal thoughts rising. Highest in the Midlands.

Kooth Week 10 COVID infographics

Hope

The concert had just finished and the hall was semi-lit. A dance recital entitled ‘Hope’ had coaxed everyone’s feelings up from deep within to just under the surface, like fish in an aquarium hovering at the top for specks of food. The main supporter of the show was the Patel family who had recently lost one of its eminent members. He was survived by his young wife and three kids. The soft thuds of seats folding up, the hiss of people whispering in gentle tones and trudging in small steps towards the exit filled the warm air.

I approached the 17 years old Patel boy, one of the sons. He appeared shrunken. Contracted, like an empty plastic water bottle, after a flight.

“How’re you doing?”
‘Not bad. Thanks’ he stated, unconvinced, looking downwards and sideways.
“Did you enjoy that?”
‘Yes. T’was nice.’ Still expressionless.
“How’s mum doing?”
‘We went for a safari to Kenya. That was good’ he looked up a little.
“I am sorry for your loss. I hope you’re taking good care of yourself.”
‘Yes. Thanks’. Mortified.
“Can I give you a hug?”

It was like hugging a coat stand.

Resources:

1. Child Bereavement UK: https://childbereavementuk.org/for-families/support-for-bereaved-children/
2. Winston’s wish (Charity to help young ones cope with grief): https://www.winstonswish.org/
3. Cruse: https://www.cruse.org.uk/children/how-to-help

Looking up – a true story.

At the age of 51, he was finally consumed by the very thing he loved to consume. He died peacefully in his sleep. Pat, his wife was sad but knew it was inevitable. She carried on.

9 months later her son Kevin went on a Summer camp. He was 15. The camp site had been shut all winter. 2 days before the start date, the camp site had been checked by officials and declared safe. The lads arrived with great memories of the previous year and masses of energy and excitement. They started with a race. With a big smile on his face, Mark flew to the finish line ahead of everyone else and was instantly charred.

Pat’s family wanted to take care of her. They moved her from her family home in Surrey, to a house closer to her brother’s, in Essex.  Pat went quiet. She silently and diligently pulled the shafts of her hair out from their roots one by one till she created white little clearings on her scalp. She scratched those clearings with such vigour that they turned into raw, red, weeping craters. She would empty the kettle before plugging it into the mains. She wore her clothes back to front, inside-out. She stood by the window for hours, waiting. She drove down the motorway in the opposite direction. Her family couldn’t help her. They thought she needed to be moved to an Institution for the insane.

A doctor in the Isle of Mann was well-known for his abilities in this field. Pat’s sister-in-law asked him if he would make an exception and help Pat even though she did not live on the Isle. He kindly agreed. He saw her. He unpicked her heart. He unwrapped the wounds in it. It was an excruciating process. She felt he was cruel, forcing her into the darkness of her soul with a torch, untangling the tight knots in her mind, wading through whirlpools of turbulence within.

After 5 weeks he invited her to live in his family home. He encouraged her to walk down the street. The first few times he went with her. Thereafter she walked alone, with her eyes fixated on her shoes. He suggested she try looking up and tell him what she saw. “Blossoms on trees, the church spire, white fluffy clouds, birds, light…”

By the time the hair-dresser had finished with her, she was ready to go home.

(If you or anyone you care for needs support after loosing a child to suicide or addiction: The Compassionate Friends : Supportive weekend retreat for bereaved parents: 6-8th July 2018: https://www.tcf.org.uk/content/events/91-supportive-weekend-retreat-for-parents-bereaved-by-suicide-addiction-or-substance-use/)

 

 

Day 778

Bereavement by suicide is a risk factor for suicide.

A study published in The British Journal of General Practise in August 2016 found that among GPs there is a low level of confidence in dealing with suicide and an unpreparedness to face parents bereaved by suicide. Some GPs described guilt surrounding the suicide and a reluctance to initiate contact with the bereaved parents. They talked of their duty to care for the bereaved patients but admitted difficulties in knowing what to do, particularly in the perceived absence of other services. They also reflected on the impact of the suicide on themselves and described a lack of support or supervision.

2 weeks after Saagar’s death I went to see our GP. I just wanted to see him as there had been no communication between us since Saagar’s last consultation, which was 2 days before his death. He asked me if I was sleeping well. Through a non-stop stream of tears I said I wasn’t. He gave me a prescription for sleeping tablets to last me 3 months. Just perfect for someone who was para-suicidal. Time up. Consultation over.

A few weeks hence I consulted a homeopath. She asked me how I felt. She listened. She created a safe space for me to share from the heart. She wanted to know how I was coping and what support systems I had in place. She acknowledged my tears. She held me like a baby. She taught me techniques that would help me release anger out of my system. At the very end she gave me some medicines for healing. She knew exactly what needed to be done. Having time with her was a blessing.

This is how Wikipedia defines ‘Alternative medicine’: practices claimed to have the healing effects of medicine but are disproven, unproven, impossible to prove, or only harmful.

Lately, there is a trend towards slating alternative medicine as quackery. This is worrying as it assumes superiority of Allopathy over all other disciplines for every possible condition. However, this is not the case. The pharmaceutical industry has something to do with this propaganda just as the automobile industry had a huge influence on cutting back train services in the UK. As far as evidence is concerned, Randomised Controlled Trials are often not do-able or appropriate for many medical interventions within Allopathy.

Holistic care is only possible if we acknowledge the strengths and weaknesses of different disciplines and use them in conjunction with each other.

Ref: http://bjgp.org/content/early/2016/08/15/bjgp16X686605