Not ‘them’ and ‘us’. Just ‘us’.

It has been a dream to be face-to-face, talking about Saagar with the Psychiatric community. In the past 7 years that has not really happened. On Wednesday, the 15th of September, I got as up close as possible with an entire department of roughly 100 psychiatrists and Therapists at differing levels of experience and practice. They were in New York and I was here, in London. The Grand Round was organised by a colleague, Prof Mike Myers, who gave it the title:

‘Losing a Son to Suicide: How One Mother is Opening Hearts and Minds Around the World’

After a cordial ‘meet and greet’, the film ‘1000 days’ was screened. It was followed by complete silence. Same as the previous time it was screened. And the time before. Each time the audience was left speechless.

After a long minute I gently stepped in with the assurance that this was a normal response. I invited questions and comments. I thanked them for the work they do and acknowledged how difficult it is for the profession to deal with such losses. I shared my hope that the film will deepen their insights into the human element of such deaths and the value of forging partnerships with bereaved families.

What followed was a fulsome, creative and holistic exchange of ideas.

“What led you to make this film and share your life in this way?” one young Resident asked me.

“I could only work with what I had and do what was in front of me. When I could write, I wrote. When I could speak, I spoke. When I could learn, I learnt. From the moment I heard the news of Saagar’s death, my only intention was that this must stop. No one should have to suffer the way Saagar did or the way I and his friends do. This film came about because it’s time we recognize that these lives are worth talking about, that the desire to end one’s suffering is a normal human desire and that we all have a role to play.”

Winner – BEST DOCUMENTARY – Swindon Independent International Film Festival
Winner – Brighton Rocks Film Festival – Spirit Award
Winner – Compassion Film Festival Colorado – Reflections of Love People’s Choice Award
Nominee – Morehouse College Human Rights Festival Atlanta (winners yet to be announced) 
Semi Finalist – Gold Coast International Film Festival – New York 
Nominee – Long Story Shorts International Film Festival 

Upcoming festivals where the film can be watched starting 23rd September 2021. Tickets available now.

‘1000 Days’  
Morehouse College Human Rights Film Festival – fosters ongoing discussions about human rights and social and political issues.
September 23 – 25 https://morehousehumanrightsfilmfestival.com/2021-film-guide/

‘1000 Days’ at Women Over Fifty Film Festival:
WOFFF is an inclusive, international film festival celebrating women over 50 in front of, and behind the camera.
25 Sept – 2 Oct – tickets on sale
https://wofff21.eventive.org/films/61379c142c09f100b90ae7c4

Comments:

”Bringing people closer and keeping them deeply connected despite social isolation.”

“Keeping the silk threads of human bonds as strong as ever.”

I hate my shoes.

(‘A pair of leather clogs’ by Vincent Van Gogh 1853-1890)

“I am wearing a pair of shoes.

They are ugly shoes.

Uncomfortable Shoes.

I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes.

They are looks of sympathy.

I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.

There are many pairs in the world.

Some women are like me and ache daily as they try and walk in them.

Some have learned how to walk in them so they don’t hurt quite as much.

Some have had to wear the shoes so long that days will go by before they think of how much they hurt.

No woman deserves to wear these shoes.

Yet, because of the shoes I am a stronger women.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.”

  • Author unknown.

One death by suicide is one too many. On World Suicide Prevention Day, today, let us start by

  1. believing that suicides are preventable.
  2. knowing that we all play a part, however small, by being aware, educated and resourceful.
  3. being kind and courageous enough to ask the ‘S’ question, listen and respond.

Now, they are pink.

The day after he died, our door-bell went berserk. This time the same young woman from the local florist, who had been here thrice already, stood at the door again. She had arrived with yet another bouquet of pure white lilies and roses. She stood just outside our front-door with tears rolling down her cheeks. Had this stranger accessed her own sadness or was she feeling mine? I thanked her and tried to console her, wordlessly holding her hands in mine, not believing any of that was happening.

Our eyes met through the fresh white flowers and films of salt water. She didn’t know me or the young man who had died and I didn’t even know her name. But we were flowing in the same river of humanity. Of loss.

For weeks, every room in our house reeked of the sickly-sweet stink of white lilies. I used to like that fragrance before all this but now it screamed ‘DEATH’. It crept into every empty space, crevice and corner. It sneaked under tables and inside locked cup-boards. It suffused my clothes and hair and got into my body like poison.

All these years later, that smell can still hit like an axe on top of my head when I walk past an innocent flower shop.

On my birthday last week, a bunch of Freddie’s flowers arrived unexpectedly. I thought I had cancelled that delivery but it seems I hadn’t. Roses, lilies and gladioli – but this time, they are a pretty pretty pink. Six days on, they are open and smiling and guess what … no heart-breaking fragrance.

Our long-distance relationship is working. Thank you, sweetheart.

Same story

“Three weeks before that day he was at a bridge and he called his friend who called the police. They came out but just told him to call the GP. One week before that day he called another friend saying he had a panic attack. The friend picked him up. Four days before that day they told the GP what was happening. She gave him a prescription for anti-depressants and said it would take 3 weeks for a referral. 4 days later my brother was dead. At no point did anyone tell the family.”

That day was sixteen days ago.

I wonder if anyone sat down with him to listen to what was going on with him. Two friends, one GP and the Police – none of them could put him in touch with his life and keep him safe. Yes. Ultimately it is up to him but I wonder if he was told that it might be helpful to get in touch with his sister, his brother, his mother, his father – the people who had known him all his life. That he could choose someone who he had a deep connection with, someone he trusted, and let them know how fragile he was at present. Someone who truly cared.

I wonder if you’ve seen this recent advert from St John’s ambulance where a dad is desperately trying to save his son. It encourages lay people to learn First Aid, in case of a physical health crisis. It’s a good one.

Save the boy”

Let’s put this in the context of doctors not knowing how to give First Aid to someone in a Mental health crisis.

The police not knowing that this is life-threatening, that there are resources in addition to the GP, like A&E, Maytree, Papyrus, Samaritans, CALM, their community, their family.

The GP not knowing that this is life-threatening, that there are things in addition to antidepressants that help, like having a proper conversation, exploring the suicidal ideation, informing them that it would be in their best interest if they included a family member or a friend of their choice in their care, giving them details of helpful Charities, giving them compassion and hope, drawing up a Safety Plan, getting in touch with the local Mental Health Crisis Team and  being aware that antidepressants can make things worse for young people in the short term.

Over-medicalisation of suicidal thoughts and behaviours in a setting where most medics are uneducated and unsupported in managing these crises.

Save the boys and girls by insisting on education for all professionals in medicine, nursing, law-enforcement, prison service, youth services, social work, for schools universities, hair-dressers, cab-drivers, students, parents, teachers, managers and everyone else is the only way to get it right – A multi-agency approach to Suicide Prevention.

In the USA, ‘legislation’ was recognised as essential to Suicide Prevention(SP) in 2012. At present, 10 states have legally mandated training for all health care professionals.

ASIST Training (Applied Suicide Intervention Skills Training):

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.