Day 967

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One of the actors at the above workshop, who is also a mentally ill patient in recovery spoke about his insights, “I realised that as long as I depend on the State to look after me, I will be met with the lowest common denominator. This brought me to the conclusion that I may not have control but I have agency.”

After I got home, I looked up the meaning of ‘agency’ to figure out exactly what he meant. Agency is an ‘action or intervention producing a particular effect’. For example, many infectious diseases are caused by the agency of insects. Synonyms to this effect are: influence, power, effect, force, means, channels, routes, mechanisms and techniques.

In effect, he was referring to ‘self-help’. He was saying, “I have the power to change my situation.” It was inspiring for me to hear him say that. That statement reinforced the message of the workshop – there is a very thin line between the well and the ill. Role reversals are common. Sometimes visible. Often not.

I came away from there with a mixed bag of feelings. On the one hand, I could clearly see the daily struggles of mentally ill patients and on the other, their brilliance shone through. I wonder how Saagar would have been, had he got through that big dip.

May the force be with you. And me.

Day 963

Wysa

A young couple, committed to making a difference used their love and  intellect to create Touchkin, Artificial Intelligence for proactive care, integrating behavioural health into medical practice.

Tom Insel, a psychiatrist from National Institute of Mental Health (NIMH), the world’s largest mental-health research institution, spoke frankly about how MH services and research were failing to help the mentally ill. He openly dismissed the DSM (Diagnostic and Statistical Manual of Mental Disorders). At any given moment, roughly one in seven of the world’s 7.5 billion people is struggling with mental illness. “We’re not going to reach all those people by hiring more psychiatrists,” says Insel. But we might reach them with smartphones.

In one of his talks, Insel was sharing the intricacies of the delicate workings of the brain.   Someone interrupted him and said, “You don’t get it. The house is on fire, and you are discussing the chemistry of the paint”

Jo Aggarwal, one of the developers of Touchkin says:

“This line from the article resonated deeply with me. It’s a familiar sentiment – one many of us in development have had in conferences on employment, education, conflict. They are all at some level connected to the base fire that engulfs our world today – that of mental health. Until this fire is brought under control, we don’t have a hope for any of the rest of it.

His dramatic move lends credibility behind the idea that phones may be the answer. Identifying issues using smartphone behavior is powerful, though it can feel creepy. But detection is not enough. In our trials at Touchkin, phone sensors were able to predict depression in people with diabetes to a 90% accuracy, and went a long way in getting the physicians convinced to integrate mental health into their regimen. But only 1 in 30 people diagnosed went on to take treatment for the depression.

It said to us – “The house is on fire, the fire brigade is missing, and here we are saying how accurate our fire alarms are”

Wysa the emotionally intelligent penguin willed itself into existence somewhere along the way. It was a side feature created between ‘formal’ projects to improve accuracy. Taken by how people reacted to the prototype, we all kept working on making it better… in three months it crossed a threshold. It started changing lives. Last month, 3 people wrote in to say it saved their life, it is what is keeping them from suicide. Over 50,000 people talked to it anonymously, and thousands of them wrote in to us to say how much it meant to them.

Unlike the Stanford psychologists creating Woebot- we have no hypotheses around Wysa. It is evolving entirely based on what works for its users. It has evidence-based techniques, but everytime we add more tools or advice or tips we get users telling us to just let them talk to Wysa, and not to underestimate how much of a difference that makes.

“The fire in the house, is in our brains. The fuel is the language of the conversations we have inside our head. “

We started out, like Insel, trying to detect the fires… Wysa is leading us to try and put a fire extinguisher in everyone’s pocket. Any pretence of our own hypothesis went out of the window when the first person wrote in to say it saved their life. Now we are following it to see where it goes.

Like us, like Tim, there are many unwitting recruits to this fight.

Rick Little started fighting it as soon as he graduated college. So many of my friends… Sangeeta Mahajan who lost her son to suicide and has dedicated her life to preventing it for others. Anjana Ajay who is changing others lives after healing her own Stage 4 cancer by focusing on healing her mind. Bhavana Issar who is doing amazing work at Caregiver Saathi.Pooja Goyal who is creating resilience in pre-school children and their parents, bravely facing all the storms that come her way. Archana Aggarwal Sarda has made emotional support a way to get intl level diabetes outcomes in rural children, long before she realised that she was doing it.

None of them are psychologists. They each have options of more comfortable, lucrative ways to spend their time. They are all powerless to not do this. “The house is on fire. Once you see it, and you realise that you can stop it spreading, it is hard to do anything else.”

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Day 957

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At 26, she finally sought help. She is bright, has received fabulous education, is brought up in a stable, happy household and has travelled extensively. After graduation she got a great job in the city of London but came to realise it was not right for her.

After a tempestuous patch, she has landed on her feet. Great wisdom has come to her in abundance. She has discovered that her family is her strength. She can trust them. Her mother walks right beside her, growing with her, every step of the way. She now appreciates her dog more than ever before. A drive to the coast and a stroll by the sea with a loved one is not something she takes for granted anymore. Yoga is now a part of her daily routine. Gardening brings her peace. She spends her time colouring picture books and drawing sketches.

Her creativity is finding expression. Zaynah lives with Borderline Personality Disorder and writes a blog – Not a simple mind. Her life is not easy but it is a hundred percent authentic. She shares it generously. She is determined to help others. While Facebook constantly incites her to compare her life with that of others, she knows better. She can tell real from fake. She understands she is in recovery. It’s a zig-zag road but it’s good. Yes. All this learning at 26!

“Recovery isn’t about getting back to how you were before, it’s about building something new.” – Anonymous.

In the recording below, Zaynah talks to me about her diagnosis, her recovery and the changes in her life:

 

Day 956

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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 948

Why Pinky?

My deepest thoughts are in Hindi. Only when I am in a hurry do I think in English. It’s my second language. A legacy of the Raj. Even though I have been using it for most of my personal and professional life, I need to constantly work at it. Being bilingual means one has 3 languages to have fun with – Hindi, English and Hinglish.

The English in the UK is different from the one I learnt as a child. That English was more a medium of education. As a teenager I started to enjoy it, especially through Tintins – billions of bilious blue blistering barnacles.

The usage of a language in its native country is very different from anywhere else. I had no idea what ‘Pinky’ was. For me it’s a person’s name, mostly a girl but could also be a boy. Little finger? Really? It would never have crossed my mind.

This notice in the loo on the train showed me the endearing way in which vernacular can be used : ‘Please don’t flush nappies, sanitary towels, gum, old phones, unpaid bills, junk mail, your ex’s sweater, hopes, dreams or goldfish down this toilet.’

‘Numpty’ is not quite the same as idiot. It has a particularly affectionate tone to it. Cute! Again, a new one for me. ‘Skulking’ is not as simple as loitering. It is, moving about shadily, with something to hide. It has a naughty/sinister connotation to it. ‘Four Weddings and a Funeral’ introduced it to me.

This evening I asked 2 English men their favourite word and both of them perfectly pronounced the same one:  Floccinaucinihilipilification.

Recently I was flattered to be asked to write an article for the charity Mind, about a simple coping mechanism that has helped me and can help anyone. I wrote about writing. This is how I grieve: Woes and Prose.

 

Day 944

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The Great Master

All I manage to read these days are short stories. Partly due to my abbreviated attention span and partly because the time has come when I ‘should’ start wearing reading glasses but I don’t. I get by, by increasing the font size and by reading for short periods of time. Also by squinting a lot.

‘The First Forty nine stories’ is a collection by the Nobel prize winner, Earnest Hemingway. In the preface he says, “In going where you have to go and doing what you have to do and seeing what you have to see, you dull and blunt the instrument you write with. But I would rather have it bent and dull and know I had put it on the grindstone again and hammer it into shape and out a whetstone to it, and know that I had something to write about, than to have it bright and shining and nothing to say, or smooth and well-oiled in the closet, but unused.”

After devouring the collection, I read up about him and was saddened to find that he suffered with depression and died of suicide. Here’s an example of the sensitivity and vulnerability of his characters and the simplicity of his story telling style. It’s called ‘Cat in the rain’.

https://soundcloud.com/user-474898075/new-recording-2

 

Day 936

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Born to run

“Patti will observe a freight train bearing down, loaded with nitroglycerin and running quickly out of track… she gets me to the doctors and says, ‘This man needs a pill’.”

 His new memoirs speak a lot about his long battle with depression. Bruce Springsteen had a strong family history of mental illness. He didn’t do drugs as a rock star which is unusual. He was afraid  they would unmask his genetic potential for insanity but he was already suffering  with serious melancholia.

On the therapeutic value of touring he says, “You are free of yourself for those hours; all the voices in your head are gone. Just gone. There’s no room for them. There’s one voice, the voice you’re speaking in.”

His wife of 25 years, Patti understands his illness. She helps him manage it. “A lot of his work comes from him trying to overcome that part of himself”, she says.

The media often reinforces negative stereotypes of people with mental illness, depicting them as inadequate, unlikable, dangerous, confused, aggressive and unpredictable. The Boss’s devotion to many progressive causes sharply contrasts that image.

Public stigma leads to self-stigma. It stops us from talking about mental illness and worse, ask for help when we are struggling. Patti was initially apprehensive about the book in which Bruce speaks openly about how years of depression left him crushed. It would be read by millions. But then, she saw the value in that.

I watched Bruce Springsteen in 1985 at a Live Aid Concert in Delhi. I was terribly envious of the young lady he invited on to the stage from the audience to dance with him.

Long live The Boss!

“In the day we sweat it out on the streets of a runaway American dream
At night we ride through the mansions of glory in suicide machines
Sprung from cages out on highway nine,
Chrome wheeled, fuel injected, and steppin’ out over the line”
H-Oh, Baby this town rips the bones from your back
It’s a death trap, it’s a suicide rap
We gotta get out while we’re young
`Cause tramps like us, baby we were born to run.”