Day 965

Guidelines, guidelines everywhere…

NICE guidelines on ‘Bipolar Disorder in Adults’ regarding the role of families and carers state:

“Quality standards recognise the important role families and carers have in supporting adults with bipolar disorder. If appropriate, health and social care practitioners should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.”

“Why is it that some psychiatrists sometimes don’t fully appreciate the views of carers and involve them in the care of a patient when NICE guidelines clearly state that it should be otherwise?” I asked a senior psychiatrist casually during a recent conversation. “Traditionally” he said, “doctors were sons and daughters of doctors, their friends and spouses were often doctors and those were the people they spoke with. Carers didn’t fit into that box. It’s a cultural thing, still lingering. Hardest thing to change – a mindset.”

India gets criticised for its caste system. In other countries it exists in other forms – the power dynamic between different groups of people in different strata of society. As the Grenfell tragedy unfolds, I see how the management didn’t  take the resident’s concerns seriously. What is the nature of Tenant-Management relationship? Who is disadvantaged?

Any number of guidelines cannot change deep-rooted, unconscious biases. Only humanity can.

Mrs May visited the site but couldn’t speak with the residents for ‘security’ reasons and because she is very tired after her recent election campaign. Being with them would have taken compassion. And humanity. I wonder if this was a Mayfair tower wether she would have felt more secure and less tired. 

 

 

 

Day 959

In 20 weeks, it will be 3 years.

It has started to dawn on me that this is irreversible. It is final. He is gone and is not coming back. Ever. So far I was living in the third person. All of this was happening to someone else and I was just observing and documenting the proceedings as an interested spectator. A curious on-looker.

By a brisk random stroke of the proverbial brush, I had been shoved on to an alien canvas where I met wonderful people. They shared extra-ordinary insights. They had survived some harrowing traumas. Some, a long time ago. They came together and supported each other and there I was, one amongst them.

Somewhere deep inside, I imagined that another crude brush-stroke would flick me back on to the old canvas and things would go back to being as they were. But it is becoming clear that I’ll have to stay here, in this landscape, for as long as I live. There is no way back. No return. No re-entry. No u-turn.

At the start, his smell was in my clothes, his voice echoed around the house, his drums played in the back-ground, his favourite foods sat in the pantry, his clothes appeared in the wash, letters arrived in his name. Today, the batteries in the weighing scales died. He had put them in. It felt like something precious was snatched away, again.

With time, the distance is increasing. Between which two points? I am not sure.
Infinity and me?

Day 958

DSC00625

An excerpt from the Eulogy by Saagar’s uncle (my brother), Chetan:

“Two things about him come up over and over again.
The first is how much fun he was to be around. His ability to laugh. To make people laugh. And his astonishing ability to laugh at himself.
The other was how helpful he was. How he would do things he did not have to, to help other people out.
But clearly Saagar was so much more. He was so many things to so many people. And it is very difficult to capture in words the essence of what a person is. In the angst of his loss, his aunt wrote a short poem, which captures him more beautifully than I ever could, so I would like to read out now.
You..
You were more…
More than the dreams you dreamed
More than the laughs you shared
The beats you kept of the music you played
The words you learned of the tongues you spoke
The love you sought and the hearts you won
More…
More than the questions we ask, and the tears we shed
And more, much more than the demons you faced
And the battle you lost.
Hope you found your peace, and some day we find meaning…

When I think of his having moved on, I am in despair. But when I think about Saagar himself, what comes to mind is a series of memories. Knowing Saagar, they are all a lot of fun.
I fIrst met Saagar Naresh on a warm day in the summer of 1994 in Delhi. A baby was brought before me, probably 30 minutes after birth. I had no idea a human could be like that tiny, that fragile. The honour bestowed upon me was to be the very first person on this planet – after his mother, of course –  to provide him nourishment. I touched a spoon with honey briefly to his lips. That was my first meeting with Saagar Naresh.
Saagar has been a constant source of joy and pleasure ever since. The odd way in which he slept in bed as an infant.  The 2nd birthday where the birthday boy vanished, only to be found in the balcony with the new puppy, sharing a bowl of yoghurt, one spoon at a time.
I remember the 8 year old who never tired of practicing his bowling. The child who found the courage to get into a fixed wing glider for a joyride. He came out badly shaken,  but proud that that he had done it.
And the 14 year old who – once when he was visiting us – decided it would be fun to have my pet Doberman, Cleo, lick his head.  So he poured coconut oil all over his head. And Cleo was more than happy to oblige by licking it all off.
I remember the naughty 18 year old bodybuilder who put a post on his sister’s facebook page when she wasn’t looking, which said “My brothers triceps could dam a river”. And, of course, Saagar and Hugo’s mimicry of the English spoken by Indian tour guides would always have us in splits.
Saagar was great fun. I can bet that wherever he is right now, those around him are happy that he is there. Just like we have been for the past 20 years. Of course, there is regret that I will not see him soon. But there is gratitude for the time that I did have with him.
Saagar was gifted with a natural skill for languages, and along with that comes the desire to travel, which he did extensively. And because of him being far away and traveling often, there were always extended periods when we would not see each other.
Saagar has set off on another such trip now. And I think it is just a matter of time before we run into each other again. Honestly, I can’t wait for that day.
We miss you Saagar. Have a great trip.”

Day 956

images

Death seems to be all around me. It has seeped into my bones. My thoughts are filled by it. And my feelings. Yet, I don’t understand it. It is so many things in one – intrigue, loss, finality. While it is an essential part of life, why has it flooded my being? Standing under an old oak tree, my back against its barrel trunk covered in rough bark, eyes closed, I beg for a shred of the silent ancient wisdom it holds. Its roots connect me to grieving mothers everywhere. I see their shattered hearts, vanished futures and hollowed rib cages mirror mine. The globe is covered in a blue fishnet of grief.

Helen Dunmore, a poetess, writes about death, staring it in the face with calm and courage as cancer takes home in her body. She wrote this poem 12 days ago, 12 days before Death took her in her arms.

Hold out your arms

Death, hold out your arms for me
Embrace me
Give me your motherly caress,
Through all this suffering
You have not forgotten me.

You are the bearded iris that bakes its rhizomes
Beside the wall,
Your scent flushes with loveliness,
Sherbet, pure iris
Lovely and intricate.

I am the child who stands by the wall
Not much taller than the iris.
The sun covers me
The day waits for me
In my funny dress.

Death, you heap into my arms
A basket of unripe damsons
Red crisscross straps that button behind me.
I don’t know about school,
My knowledge is for papery bud covers
Tall stems and brown
Bees touching here and there, delicately
Before a swerve to the sun.

Death stoops over me
Her long skirts slide,
She knows I am shy.
Even the puffed sleeves on my white blouse
Embarrass me,
She will pick me up and hold me
So no one can see me,
I will scrub my hair into hers.

There, the iris increases
Note by note
As the wall gives back heat.
Death, there’s no need to ask:
A mother will always lift a child
As a rhizome
Must lift up a flower
So you settle me
My arms twining,
Thighs gripping your hips
Where the swell of you is.

As you push back my hair
– Which could do with a comb
But never mind –
You murmur
‘We’re nearly there.’

 

 

Day 955

GMC says

Saying sorry

A letter I wrote this morning to the world’s first medical defence organisation that is proud of its rich history of guiding, supporting and defending its members:

Dear Medical Defence Union,

Here, I speak more as the mother of a deceased child than as a Consultant Anaesthetist. When a patient comes to my hospital to have surgery, there is a legal contract between him/her and the hospital. As per that, the hospital is obliged to safely complete his/her operation.

When I see that patient on the morning of their surgery, I speak with them and gain their confidence. The trust they place in me when I look into their eyes and assure them safety is not legislated for. Trust is an empowering human sentiment essential to the patient, enabling them to come for their operation. Trust is the basis of any meaningful relationship.

2 days before my son died, his GP, Dr F assured us that he was on the right medications and would soon start showing signs of improvement. After my 20 year old son, Saagar Naresh’s death on the 16th of October 2014, I didn’t hear at all from our GP. Not a word of condolence or sympathy. Complete silence. At the Coroner’s court the GP said that he followed the advice given to him by the MDU, to not call me after my son’s death.

Considering he knew me for 10 years and I entrusted my child’s well-being in his hands, I think it would have been ‘basic decency’ for him to call or visit. Legally speaking, a 20 year old is not a child. But for me he is. Human relationships are way beyond ‘legal’.

In light of GMC’s Duty of Candour, please rethink your advice in the future. The practice of medicine is founded on humanity.
Please do not take it away.

Kind regards,
SM.