Three years of nothing

IMG_5170

One morning as I set off to work on my bike, my neighbour bundled up her chatty 6 years old son in her car and drove him to school. In the evening when I got back home, huffing and puffing, she was there again, putting the bins out with her son. I unlocked our front door and walked in with the biggest lump in my throat.

A few months ago, a notice arrived from the Council saying that the rubbish collection day would change from Tuesdays to Fridays. My first thought was, “Must let Saagar know.” It’s not the fancy things, but silly, mundane, ordinary, everyday things that make up the essential fabric of life.

Yesterday was three years since we spent a whole day together, going to the GP, then to the green-grocer and bank, then for a walk and then for an afternoon nap. When he was upstairs in his room, I phoned my brother in India and shared my sadness and helplessness about Saagar’s illness. He said he would come over as soon as his Visa came through, most likely within the next couple of days. I felt re-assured. I cooked a nice meal. We ate and watched TV together. We kissed good-night and went to bed.

3 years ago, today was the last time I drove him to the gym and back. He didn’t spend much time there. I noticed but didn’t make much of it. I asked him if he met any of his friends in the gym. He said no. He did his best to carry on. Today was the last time I gave him a cuddle and kissed him good night.

Last week I happened to walk past the GP surgery where Saagar was treated (or not). It has closed. The GP has retired. A barrage of mixed feelings emerged out of nowhere. It felt good to read that sign. Yet, it marked the end of a career, a vocation. God knows how many people found help and comfort there. God knows how many got lost. God knows how many such practices still exist where GPs work single-handedly and in isolation, hiring locums on occasion.

Walking along the Thames a few days ago, a stream of bubbles glided across my field of vision with the majestic, unshakable St Paul’s cathedral standing solidly in the background. The bubbles captured all the colours of the rainbow hidden in the autumn sun. The breeze sculpted subtle shifts in the shapes of the bubbles as they floated along the river. They danced and smiled as they moved with the wind. They added immense beauty to the world even though they lasted less than a few seconds.

Billions of people have lived and died before Saagar and I. Hopefully, billions will live and die after us. We are like bubbles in the ocean of life, capturing all the colourful emotions and being the best we can for as long as we are here, however long or short.

Saagar’s best friend Hugo shares his thoughts and memories. He also sings a beautiful song for Saagar. We love you and miss you darling Saagar. May peace be upon you!

 

 

 

 

A life sentence.

The best part of being human is to be able to feel stuff. All kinds of stuff. The world seems to be forever in pursuit of happiness in more money, more holidays, more clothes, more children and so on. The elusive ‘happiness’ is put on hold until the ‘more’ arrives, soon to be followed by more ‘more’.

In a week, it will be 3 years since Saagar died. For days I have been feeling this day approaching like a huge oil tanker which is going to squash my dinky little boat. This inauspicious day that should be removed from all calendars everywhere for all the years ahead. It should be obliterated, erased, deleted and destroyed.

I think back on this time three years ago, trying to understand how Saagar must have felt. I try to find words for the thoughts and feeling that he could not verbalise. I lament the fact that no one could read his body language. I admire him for coping with his state of mind with patience and dignity. I look at his face-book post from this night. It was a full moon. He said ‘big ass moooooon innit”. I marvel at his ability to appreciate beauty. I remember how funny he was. I get a smile on my face. I promise myself never to take one moment of those 20 years for granted. Each of them was a blessing. Yes. It’s true that this feels like a life-sentence sometimes. Yet, I know I am blessed.

Screen Shot 2017-10-08 at 23.46.06

“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.”
― David Foster Wallace

 

World Suicide Prevention Day 2017

WSPD 2017

WSPD

231 school kids died of suicide in 2015.
Please support PAPYRUS in tackling this impossible reality.

‘Take a minute, change a life.’

Taking time to look out for someone who may be struggling, encouraging them to talk, offering a word of support and listening could help change the course of their life. Making someone a cup of tea, inviting them for a walk or a run, asking them,”Are you OK?’ could make a world of a difference to them. It would surely enrich your life too.

This series of short films is about real people and real stories. It’s about life and death. It’s about what we can do as individuals and as communities to help each other through dark times. It’s about you and me. Please scroll all the way down to watch all the snippets.

https://www.talkaboutsuicide.com/

A vigil will be held on Thursday, the 14th of September at Hyde Park, Speaker’s corner at 6.30 pm. We will get together to honour the lives of those lost by suicide. Please bring pictures, candles, stories, poems, memories and songs. It will be an occasion for us to celebrate our love.

I am not my diagnosis.

While I continue to struggle to figure out Twitter, forget how to update my website, get confused while recording podcasts, consistently get my innumerable passwords mixed up, stay oblivious about Instagram and Snapchat, the digital world gallops ahead.

Digital Interventions in mental health Conference 2017 was recently held in London. It explored topics across psychiatry, technology and culture to identify innovative ways of addressing mental health needs.

Dr Becky Inkster is a Neuroscientist, passionate about digital interventions in mental health, social media data analysis, genomics, molecular biology, and neuroimaging. She co-founded Hip-Hop Psych as she is passionate about working with hard-to-reach, disadvantaged groups and youth culture.

‘Views from the street’, ‘Prison transition tools’, ‘Beyond the bullets’ and ‘The Digital Psychiatrist’ are some of the workshops that were conducted at the above conference. The range of topics was rather fantastic. It was aimed at improving our understanding of how social media is helping to create and facilitate new spaces for mental health practices and support, exploring the benefits of social media and social networking to improve a sense of identity, self-expression, community building and emotional support through examining a few popular international examples. Participants and facilitators engaged in interactive sessions to understand how new tools for self-expression via pictures, videos, captions and short personal narratives can help break down the stigma surrounding mental health and perhaps even lead to more people seeking help. They explored how to empower young people to use social networks in a way that promotes their mental health and wellbeing, how to harness the power of social media to nurture mental health innovations that the future holds.

Impressive stuff. I carry on doing what I do. I write another article for the Huffington post – Darkness to light. I talk about my darling Saagar and emphasise the importance of us, the people, educating and empowering ourselves so that we can help ourselves and each other through the light of knowledge and empathy. I continue to speak with ordinary people living extra-ordinary lives. Here is a conversation with Sara Muzira, mother of the beautiful Simba. Both, mum and son are artists. She talks about the state of inpatient mental health services in her experience and things that can be made better for patients and their families. Thank you Sara.

 

 

 

 

 

 

 

 

 

 

Day 967

DAwbtccWAAEAAgj

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 966

2 (1)

It seems like that was another lifetime. Some moments however last forever. My mind has been dancing in overlapping elliptical, circular, zig-zag and squiggly shapes between the remotest past and the far future and deep inside this bottomless present moment. I find gems scattered all around. Today the moment when I first saw his face shone the brightest. I picked it up. I held it in both my hands, looked at it for a while, felt it, kissed it and held it close to my heart. This is where he lives. In my heart, in the past, the future and the Now.  That moment from another lifetime is mine again.

Experiences can only be experienced. Not explained. Ones who has experienced it know it, ones who haven’t can have a guess. Some songs say it all. This one does. It speaks to me. It’s a song of love. Roberta Flack sings to my heart. She knows how I felt the first time ever I saw his face.

“The first time ever I saw your face
I thought the sun rose in your eyes
And the moon and the stars were the gifts you gave
To the dark and the endless skies my love
To the dark and the endless skies

The first time ever I kissed your mouth
I felt the earth move in my hand
Like the trembling heart of a captive bird
That was there at my command my love
That was there at my command my love

And the first time ever I lay with you
I felt your heart so close to mine
And I knew our joy would fill the earth
And last ’till the end of time my love
And it would last ’till the end of time

The first time ever I saw your face
Your face, your face.”

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.”

11078077_10152678753741035_8566229743541697060_n