CHIME

132 billion pounds = money saved for the UK by unpaid carers.

6.5 million = number of carers in the UK.

6000 = number of people who become carers every day.

1 in 8 adults are unpaid carers for a family member or friend.

Carers UK call them ‘The Second NHS’.

Yet, do we or the Health Service truly value them? Listen to them? Include them? Give them a voice? Understand their concerns? Treat them as an ally? Respect their abilities and contributions? Answer their questions? Educate them? Empower them? Support them? Partner with them as well as we could? Sadly not.

In my experience and that of many other families of individuals with a mental illness, the power imbalance between the health care providers and the service users does not allow for an equitable relationship. Hence, denying the patient the best chances of recovery. There is national and local evidence that proves that carer engagement saves lives.

Triangulation of services is essential for best outcomes for patients and professionals. Risk averse practices may help reduce risk in the short term but may increase risk in the long term. A recovery approach to risk and development of a “life worth living” may have longer lasting benefits through rebuilding relationships, increasing service-users skills and confidence in collaboration with carers.

Norfolk and Suffolk Foundation Trust (NSFT) have developed a program called “Stepping Back Safely” up-skilling staff, carers and service-users. It is based on five main drivers of Recovery: CHIME

  • Connection
  • Hope
  • Identity
  • Meaning
  • Empowerment

NSFT are offering free training in Stepping back Safely in July 2021 on-line. Having heard many stories where a life could have been saved only if there was a meaningful and effective communication between the three parts of the Triangle of Care, I think this training is most relevant and essential. I shall be taking it as I am sure it will deepen my understanding of the subject. If you or anyone you know might like a point of contact, here it is: catherine.phillips@nsft.nhs.uk

Watch it!

After a long wait, we can watch it. Not in a cinema but on the largest screens available in our homes. You might know that a few years ago we set out to make a short documentary on the life of Saagar and our lives after him. I am so happy that it can now be watched at the link below by clicking on the box that reads 1000 days and entering the password as suggested: hiddenFF2021

https://www.festivalreel.org/hff-2021

Presently this film is available through the Hidden Film Festival website but in time it will be a resource to increase the understanding of suicide and bereavement by suicide and the value of kindness. I hope it will generate constructive, life-affirming and healing conversations. It is 20 minutes long and is available till Friday, the 4th of June. At present it is doing the rounds of international film festivals and has been selected for 7 major ones. Thank you for holding Saagar in your hearts the way you do. For shouting out love and hope.

Cast: Freddie, Hugo, Seb, Sam, Bex, Rosie, Azin, Simon, Saagar and I.

Filmed and produced by the magical duo Jeanette Rourke and Ron Bambridge.

What some people have said:

“I cannot get the film out of my head (in a good way!). I am really impressed with the professional job done on the filming and opening drone shots of where you live etc.”

“It is beautifully made and the editing done with such sensitivity. I also loved the music – definitely sounded like a professional music for film composer.”

“Thank you so much for the film and it really brought me a lot of comfort especially  in a rough week like today when I have grief burst. I am grateful to have to know you in this difficult journey and what you have been sharing about your beautiful Sagaar, your thoughts and your journey milestones has helped me tremendously.One thing I learnt from 1000 days is that the hope of surviving this unsurvivable pain which you gave me through your story. Thank you so much Sangeeta.”

Thank you all for funding this film. For illuminating this world in your own special way!

PS: Please feel free to share it on.

An immersive experience.

I have felt safe outside lakes, rivers and oceans as opposed to inside. Shoes and woolly socks keeping the feet warm and dry, a scarf wrapped around the neck, jeans and jackets keeping me secure. These water bodies are a source of calm but I am suspicious of their invisible currents, innocent iciness and deceptive cleanliness.

Ten days ago, we drove to a little self-catering rental cottage at Constantine Bay in Cornwall, 100 yards from the beach. After a quick cup of tea we took a walk on the windy sea-face, almost swept off our feet. Its playfulness hit my face like multiple mini-darts. It must have hit some obscure part of my brain that suddenly came to believe that it would be a great idea to have a soak in the sea. This was strange given I can’t swim. I splash my arms and legs enthusiastically without staying afloat or traveling any distance. My breath gets all confused and erratic. I choke and splutter and cough. I am clearly a creature of the air. Not water. But this had to be done.

The next day, high tide was at 1834. We took our wedding rings off and left them at home as they are known to slip off in cold water. The  winds were low. Air temperature 10 degrees Celsius. Water temperature same. Sun, in and out. No rain. We changed into our improvised swimsuits, got our towels and walked to a quiet lagoon at one end of the bay that we had spotted the day before. A steep set of steps led down to it. At the bottom, sloping slate-grey rocks lay dry. Welcoming. The force of the waves was dampened by an intervening row of irregular black rocks, making the water as still as possible, lapping gently to the beat of the sea. The salty air resting on my lips and in my chest. My heart preparing to be stopped.

With my eyes focused on the sharp horizontal line between the blues of the sea and the sky, I walked straight into the Atlantic. I wanted to be neck deep in an instant and I was. An involuntary squeal escaped my throat. Coming to myself I breathed slowly with my eyes wide open. Counting. Smiling. Shaking. Completely inside that stark moment. Everything else dissolved. All of me was covered in acupuncture needles. Every swish of the waters stole some more heat away, deepening those needles infusing energy. The shock of it. And the delight of being alive. Woohooo!

40 seconds… once… and again. Then 2 minutes and then longer… and longer every day.

(Ref: TIPP Skills to modulate emotions: https://www.manhattancbt.com/archives/1452/dbt-tipp-skills/)

Twenty-seven

Dear Saagar,

It was your 27th birthday, last Thursday. You would have been 27 years old. You were 27. You are 27. Which one is it? None of the above? All the above?

You were a Presence eons before you were born as Saagar and you will be one for ever more. You are Awareness, beyond form and name. I am the same. There is no separation between us – both ageless, placeless and traceless. Untouchable. Unknowable.

Didn’t take that day off work this year. Woke up and thanked the blessed day for you, your life. On the beautiful bike ride to work, the heart overflowed with love and gratitude. Had a full productive day at work and another lovely bike ride home. Sat on your bench in the evening under the circle of trees bathed in the slanting rays of the setting sun. Felt the love.

Thank you for bringing me the true experience of love.

Yours,

Mamma.

“When love beckons to you, follow him,

Though his ways are hard and steep.

And when his wings enfold you yield to him,

Though the sword hidden among his pinions may wound you.

And when he speaks to you believe in him,

Though his voice may shatter your dreams

as the north wind lays waste the garden.

For even as love crowns you so shall he crucify you. Even as he is for your growth so is he for your pruning.

… Like sheaves of corn he gathers you unto himself.

He threshes you to make you naked.

He sifts you to free you from your husks.

He grinds you to whiteness.

He kneads you until you are pliant;

And then he assigns you to his sacred fire, that you may become sacred bread for God’s sacred feast.”

  • Khalil Gibran

PS: Please like and retweet the link below if you can. That will give a media presence to this short documentary film, ‘1000 days’, which is based on this blog and has been made with the intention of bringing us all closer together in love, kindness and understanding so that no one reaches a point where they can’t find a way to live another day. You will be able to see the film in late summer, once it has done the rounds of a few film festivals across the globe. Thank you very much.

Changing the Conversation.

First versus second.

Medical versus human.

Symptoms versus experiences.

Problem-based versus Trauma-informed.

Here is an example of language, describing the same thing in two different ways.

First:

“I was 15 when I started to suffer with mental illness. I went to see a psychiatrist who told me that I had something called Schizophrenia. For a couple of years my symptoms got really bad and people were afraid I was going to hurt myself so I was hospitalised. They stabilised me on meds and shock treatments and sent me home. For a long time, I didn’t get sick again.

Later, as an adult, I started to get symptomatic again. I got pretty psychotic and once again got put in hospital. They told me there that I was really sick and should go on disability. For a long time, I was pretty sick but then started to be able to manage my symptoms.”

Second:

“I was 15 when I started feeling different than others and really alone. For a couple of years after that, I would do things in pretty extreme ways. They made sense to me based on what I was thinking and feeling but I guess it was scary for others who didn’t really understand what I was thinking and feeling. I got put in a hospital. There I really lost hope and beliefs about being a ‘regular’ person. They put me on a lot of medication that made me sleepy all the time. After I left, I threw out all the meds and put my intensity into music.

Years later, coming out of a difficult marriage I started to have similar kinds of experiences as the ones I had as a kid. I had really strong feelings and felt pretty separate from others. I got put back in the hospital again. I was told I had a major mental illness and that I should go on disability. Though I did that for a while, I realised that I was just going along with their beliefs rather than looking at how I’d come to think in certain ways. Little by little, I figured out what to do with my intensity and I’ve been really growing ever since.”

Each one of us is simply at a different place in our growth and development. Using language that is personal and descriptive of our experiences enables shared understanding. It forces us to think of ourselves and others more broadly as human beings, free of labels and assumptions.

Reference:

Intentional Peer Support: https://www.intentionalpeersupport.org/?v=79cba1185463

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.

Less than 3

Si was flummoxed by the ‘<3’ sign appearing repeatedly in the chat box on a zoom call with friends. Sometimes all by itself, without context, without a before or after. It took him a while to realise what it was. I suppose you know already. Don’t you?

“Love thy neighbour as thyself” implies that respect for one’s own uniqueness and integrity is inseparable from the understanding of anothers. Yet, it is widely believed that it is virtuous to love others. But to offer that same love to yourself is somewhat indulgent. In fact, this misconception goes as far as to say that the degree to which I love myself, I do not love others. Self-love is commonly understood to be synonymous with selfishness or narcissism. The French theologian, John Calvin speaks of self-love as ‘a pest’. Self-love bad, hence, unselfishness good.

Selfishness and self-love are opposites. When selfish, one is incapable of loving others and incapable of loving oneself.  

Only recently have I come to know this to be the truth – I am deserving of my love. In fact, I cannot fully love and respect another, until I love and respect myself a hundred percent. I don’t need to buy expensive gifts for me to experience it. Sitting quietly with myself is an act of love. It does not need evidence. It is free of all obligatory burdens. It is freedom itself.

On this day, I hope you can be your own Valentine. Happy Valentine’s day! Today and every day.  

 “If you love yourself, you love everybody else as you do yourself. As long as you love another person less than you love yourself, you will not really succeed in loving yourself, but if you love all alike, including yourself, you will love them as one person and that person is both God and man. Thus, he is a great and righteous person, who, loving himself, loves all others equally.”  

Poverty and the Mind

Vikram Patel is a psychiatrist and a Professor of Global Health who works tirelessly to improve the mental health of people living in low and middle income countries like India and Ethiopia.

His recent research has found that all countries are ‘developing’ countries when you look at the low proportion of the health-budget they spend on mental health. Some wealthy countries may have better systems of care for maternal and child health but overall, mental health remains universally, at the end of the queue.

At present, COVID has overtaken all other agendas. However, now more than ever before, there is a recognition of the two-way relationship between poverty and mental ill-health. This may be a historic opportunity to get this right.

The relationship between poverty and mental ill-health is a complex one. How can we distinguish a normal response to poverty from a disease process? Poverty can increase the risk of poor mental health via multiple pathways, for example, poor physical health, high levels of noise pollution, violent neighbourhoods, insecurity and humiliation.

Can an increase in income improve mental health? Yes. It can but it needs to be sustained.

The fact that having a mental illness may induce poverty is less well recognised. It may affect one’s education and hence, employment opportunities. In low and medium income countries, health care is paid for by people. Due to the length of time it takes to find an effective treatment, much effort and money is wasted in doctor-shopping. Depression is inequitably distributed in society but not recognised as such because wealthy individuals also get it. We accept that long term expensive therapies cannot be delivered to the poor, so what’s the point in studying them?

After nearly a year of job-losses, the number of people below the bread-line all over the world will increase by tens of millions. In India alone, the gains made in economic growth over the last decade are predicted to be wiped out this year. The historically disadvantaged will fare worse, suffer more.

We can expect a surge in mental health problems like we did after the 2008 global financial crisis, mainly led by suicide and drug misuse. Sir Angus S Deaton, a Nobel prize winning economist wrote extensively about these deaths of despair. Economists and global health experts warn that this one will possibly be far worse.

In India, while the state is spending all its energies on the pandemic, livelihood-based organisations are finding very poor mental health in their members. Taking a broad, multidisciplinary approach to depression and anxiety rather than viewing it through the lens of a medical specialty is the need of the hour. Policies all over the world need to de-medicalise the emphasis on specialists and empower front-line providers and communities to enable them to foresee, identify and address this problem.

The bi-directional relationship between mental health and finances means that appropriate mental health interventions can improve finances. Can we persuade policy-makers world-wide to listen to global health experts and economists, look at this fast-approaching  avalanche and steer policies to protect those who are being and will be hit by it?

Talk: Poverty and Depression (https://voxdev.org/topic/health-education/poverty-and-depression-how-improving-mental-health-can-help-economic-wellbeing) – this talk was available till last night but has since disappeared.

Research Papers:

  1. Angus Deaton on the Financial crisis and the well-being of Americans (June 2011):

https://www.nber.org/papers/w17128

2. Vikram Patel on Causal evidence and mechanisms of Poverty, Depression and Anxiety (May 2020):

https://www.nber.org/papers/w27157

The Season of Giving

In July, looking for inspiration to think and write beautifully, I spent an hour on 3 consecutive Sundays listening to David Whyte, a wise and warm poet of English/ Irish origin who speaks and writes, seemingly from his spirit. I thought he was some kind of a magician as I felt mesmerized, awakened and soothed by his presence and his words.

He described the simple involuntary act of breathing as a life-sustaining exchange for the planet – inhaling is receiving and exhaling is giving. Generosity and gratitude – reciprocity in every moment. Last Sunday he spoke on the seasonal subject of ‘giving’ and I can’t help but share the synopsis of his talk in his own words here.

  1. The foundational understanding that giving is not just a logistical act of transferring something from one person to another, but an art form to be practiced. Like all art forms, practicing it takes time and spaciousness and the ability to create a relationship with the unknown, the invisible and the unspoken.
  1. To learn to give is often the simple, heart-breaking act of giving again.
  1. Giving is an essence of relationship. To stop giving is often to call an end to relationship.
  2. Giving asks us to have a close relationship with both time and timelessness. All gifts change with the maturation of both the giver and the receiver.
  1. Giving is an imaginative journey into another’s life with all the implications accompanying that journey.
  1. Giving can be a form of blessing, a way of empowering another life. The blessing is made through giving what a person does not even know they need themselves.
  1. Giving, in the words of Shakespeare, is ‘Twice Blessed’. Through exploring the edges of our own generosity, we come to understand where we have trouble receiving ourselves; and this teaches us to ask for what we ourselves might not feel we deserve. In the enriched relationship, giving becomes a reciprocal harvest where giver and receiver are not so easily distinguished.

(PS: On 3 Sundays in January 2021, he speaks about resolutions for new beginnings. Recordings and written resources available if you are able/unable to attend the live event)

To my brothers … lean on me.

This video was made after a spate of suicides by senior NFL players in the USA as they were starting to feel the effects of Chronic Traumatic Encephalopathy (CTE). Michael Irvin spoke from the heart without a script and his truth is visible.

If your isolation is getting the better of you, know that you are not alone. You are loved, silently. Reach out your hand and they will be there.