Men and boys

International Men’s Day is designed to help more people consider what action we can all take to “Make A Difference” and “give men and boys better life chances” by addressing issues such as high suicide rates, sexual abuse and health.

I had no idea when this day was until yesterday morning, when I received 4 photographs from Aidan who lives in Malasia. He is one of Saagar’s close friends and he shared a house with him at Durham. His comment read “Delivering a Mental Health talk to Schlumberger in conjunction with International Men’s day.’

Invaluable, undying friendships.

Here’s another set of friends. Rene’s friends, who are racing across the Atlantic later this month in his memory – Race for Rene. They are raising a huge amount of awareness and funds for 2 charities: PAPYRUS and Child Bereavement UK. They say, “We lost Rene to mental health in 2017. We don’t want anyone else to have to feel what that’s like.” That is a vision worth having.

Here’s a conversation with James, one of Rene’s friends: https://www.youtube.com/watch?time_continue=4&v=Aerqfealiwk&feature=emb_title

Good luck to the crew. Here’s to all the men and boys we love:

Thanks for this Mary.

Three friends

This is an approximate transcript of a presentation I made at a TCF (The Compassionate Friends) gathering of bereaved parents earlier this month. The topic was “Finding Hope after Catastrophe”. I hope you find it useful in some way.

“Hello. My name is Sangeeta. I am an Anaesthetist by profession and it’s my job to put people to sleep. Thank you TCF, for having me here this evening.

My son is called Saagar Naresh. I could often hear his cackles emanating from his room. I am pretty sure he’s watching cat videos again. He loves to laugh and make other people laugh. He’s as bright as they come, astutely picking up languages, accents and mannerisms of people around him. He would go shopping with his best friend Hugo to Oxford street and they would pretend to be South African tourists all day.

We loved cooking together. It involved chopping of onions. He got tired of his eyes stinging and watering and found a way out – he would wear his swimming goggles whilst chopping onions. It worked brilliantly!

He was an excellent cricketer. A fast bowler to be precise. He also played the drums in a band. He loved to go to the gym. Most of all, he had a heart of gold and even when he was a teenager, he loved cuddles. He spoke French and German fluently and chose to study Arabic from scratch at University as he wanted to challenge himself.

After his second year at Durham University, he came home for the summer holiday and was diagnosed with Bipolar Disorder. He was unable to go back to pursue his studies as his depression started to deepen. We saw a doctor on the 14th of October 2014. He told us that Saagar would have to wait till his medications kicked in, that he was on the right medicines but they would take time to work. On the 16th of October, Saagar ended his own life.

That was like a bomb going off in our lives. Losing him suddenly, out of the blue was our catastrophe.

Finding hope …

The Oxford dictionary defines Hope as “a feeling of expectation and desire for a certain thing to happen”.

For me, Hope is the belief that it is possible that some of the best days in my life are yet to come.

Soon after Saagar passed away, just getting through the day was an achievement. The time ‘yet to come’ was a huge burden. I had nothing left to offer to the world and the one thing I wanted, the world could not offer me. My own mortality stared me squarely in my face and it was strangely seductive.

What was I left with? My logical mind had been turned into an emotional pulp as there was no logic to this. The more I tried to make sense of it, the more I suffered. It was like banging my head against a brick wall. It did not make any sense. Period. Deal with it.

What was I left with?

  1. This moment, right NOW
  2. Me, mySELF.
  3. Nature.

NOW

How deep rooted was my belief that Saagar would always be around? How much did I take that for granted?

What am I taking for granted right now?

My breath.

My parents.

My partner.

My job.

My health.

Let death be your teacher. ‘Right now’ is all I have left. Like a bird trapped in a cage. The door is open but the bird is unable to fly away. The cage is where he/she belongs. In the ‘now’, I could only sit and watch the door, knowing that it was open. I could breathe in, take a pause, breathe out, pause, breathe in and repeat… I could fully acknowledge and feel the dark hollow that was my chest and hear the echoes of my sobs returning from the black hole within. Connecting fully with the present moment was the only way past it. There was no short-cut. No secret escape route. One moment at a time. Now, I am walking upstairs. Now, I am halving cherry tomatoes. Now, I am watching the steam rise from my cup of tea and so on… My refuge lay in this moment, right here. Right now. The future is a story. The past exists in our thoughts. Yet, our mind is in one or the other. What is real is this moment.

I had a patient once who had a black ‘Gratitude’ tattoo on her left forearm in a big bold decorative font. I asked her the story behind it. She said, ”I work with kids with learning disabilities. By the time I’ve brushed my teeth in the morning, I’ve achieved more than they can. So, I am grateful every moment.”

SELF

I was lucky to have so much support at that impossible time. My mum and brother came over from India to be with me. My friends, Saagar’s friends, their parents, my work colleagues. Everyone stood by me with love and compassion but ultimately it was up to me to live with this utter devastation. I was filled with so many questions, so much guilt and grief that I felt like I was drowning. 

It took 2-3 years but slowly I taught myself to be kind to myself. I am still teaching and reminding myself that our everyday reality is made up of stuff that is unthinkable for most people. We live the life that is other’s worst nightmare. Many can’t even imagine what it’s like to be in our shoes. 

So, we need to honour ourselves for carrying on living with as much grace and dignity as possible after having absorbed the impact of such a huge catastrophe. To know that the harsh inner critic will continue to chatter but we need to witness its mumbling, recognise the pointlessness of it and let it go.

We need to have compassion for ourselves. Compassion being not just a gentle kind feeling but small acts of courage. For instance, I used to love dangly ear-rings ‘before’. I would change them every day, to match my clothes. But for 3 years ‘after’ I didn’t change out of the boring old gold studs. One day I decided to change into one of my favourite pair of ear-rings for no particular reason. It was a small shift. It took courage. I cried. But it was an act of kindness towards myself. I needed my own friendship, my own affection. I needed to once again find ways of being at ease with myself. Lord Buddha has said “If your compassion does not include yourself, it is incomplete.”

I am learning that I need to be a ‘compassionate friend’ to myself.

NATURE

That wretched day in the middle of October was cursed but also resplendent with autumn colours. It was a festival of orange, ochre, red, green, yellow and terracotta. These decorative leaves carpeted our street. I stared out of the window watching these leaves gracefully dance their way to the ground. The trees went from being semi-nude to naked. This was the cycle of life. Nature was reminding me and showing me the devastating beauty of life. Cycles upon cycles of change, millions of times over. The impermanence of everything.

Over the next few months, I sat gazing at the Himalayan mountain range, marvelling at its history and all the changes it has undergone. I sat on a beach in Goa, watching the ocean waves change every second. Over time, I started to allow Nature to teach me what I needed to learn and soothe me when I needed to be soothed. I learnt that we humans can carry the utter tyranny of life in one hand while simultaneously carrying the spectacular beauty of it in the other.

I requested everyone to join me in singing this song by ABBA and was delighted by the upward shift of healing energy in the room as everyone sang together. It was a powerfully uplifting evening.

I have a dream, a song to sing
To help me cope with anything
If you see the wonder of a fairy tale
You can take the future even if you fail
I believe in angels
Something good in everything I see
I believe in angels
When I know the time is right for me
I’ll cross the stream, I have a dream

I have a dream, a fantasy
To help me through reality
And my destination makes it worth the while
Pushing through the darkness still another mile
I believe in angels
Something good in everything I see
I believe in angels
When I know the time is right for me
I’ll cross the stream, I have a dream
I’ll cross the stream, I have a dream

I have a dream, a song to sing
To help…”

Emergency Numbers

Earlier this year, at a Medical school in North India I spoke to staff and students about the stigma and ignorance around Mental Health. At the end of the lecture one of the senior faculty members asked me a question, “Is it helpful for people with a mental illness to be a part of a religious community?”

‘Yes’, I said. ‘Most certainly. Just like it is helpful for someone with Diabetes to be part of a religious community. It might also be a good idea for them to see a doctor.’

Earlier that day Si and I had taken a walk around the hospital and found this list of ‘Emergency Numbers’ prominently displayed on a notice board in the medical library for medical students, nursing students, dentists and doctors.

Need I say any more?  

PS: It is important for every student in every educational organisation to have ready access to reliable and knowledgeable resources if they feel the need to discuss their thoughts and feelings or are concerned about a friend.

Little things

Croydon, Berlin, Lebanon, Antrim and Troy, all within a few miles of each other. Yes. This is the New Hampshire (NH) part of New England. But the capital city of NH is not New London. It is Concord.

1.35 million inhabitants of NH live in 9,300 square miles.

9 million inhabitants of London live in 600 square miles.

It’s a different world. Time and space assume a different dimension here. They are both expansive. I have a sense of abundance and connection.

I have met nothing but kindness since I’ve been here. On the very first day, I was offered two lifts, one from Manchester airport (yes, they have a Manchester too) to Concord and then from my AirBnB house to the grocery shop and back. I have no car as I can’t trust myself to drive on the right (wrong) side of the road. I can literally hear the wires clanging and short-circuiting in my head as I watch the cars move on the roads.

Apples, maple syrup, random conversations with the locals on the street, excellent assistance in shops, witty Halloween decorations and the fall colours. Within the last week, a festival of colours has unravelled in all their glory. I don’t think any camera can do full justice to the drama of Orange, Yellow, Red, Terracotta and Green.

I have really noticed the small things. I spent yesterday morning cutting out small squares of felt in preparation for a community meeting at a small village school where they have recently lost a student to suicide. These pieces are for everyone who attends. They serve as tiny ‘blankies’, something for people to hold on to and fiddle with, to help them cope with the difficult conversations taking place in the room. I would have never thought of that.

When we got there, each table was decorated with twines, hydrangeas, little pumpkins and squashes to make the atmosphere a little bit festive. Warm and welcoming. Not too sad and drab. These little things made such a huge difference for everyone present.

On World Mental Health Day and every other day, let’s remember the little things. They are the big things.

Come October

3/10/2019. 6 am: I am excited. At the airport, waiting to board my flight to Washington Dulles. Change to another flight to Manchester and then a taxi ride to Concord, New Hampshire. This is the first leg of my travels as a Churchill Fellow. I have checked in and am having a cup of tea. I have just come across this post from a young woman on Facebook:

“According to my local crisis team, I was ‘too articulate’ to be feeling suicidal.
As a writer, and someone who works in languages, I am a naturally very articulate person. Because I could speak so clearly about my thoughts and feelings, I was discharged from the crisis team as I didn’t fit the bill of someone suicidal, or indeed, of being mentally unwell enough to need their support despite evidence to the contrary.

The Papyrus text line allowed me to articulate how I felt (you don’t have any choice really when you’re using the text service, you have to ‘say’ it how it is!!), and that was delved into so much deeper with thoughtful questions, suggestions and recommendations that allowed me to get through a real low point and see that there was hope. At no stage did they reply with ‘sorry, you’re too articulate to be feeling the way you claim’.

Non-judgemental, kind, compassionate, a REAL life saver, especially in the current climate of NHS mental health cuts.”

Judgement. The ultimate wall. Even a positive judgement can be harmful. A missed opportunity. A lost life. Who fills the gaping holes created by ‘unfit for purpose’ services, NHS cuts and ignored carers?

Charities. Families. Friends.

The needs of young people are different. They need an active, positive and creative interaction to make sense of how they feel. They need to be heard and understood. They need to know in their hearts that they are deeply loved and cared for just the way they are. They need to know that things get better. Educating families is crucial.

4/10/2019

Today’s gem: Mayo Clinic video for parents. All parents of adolescents should see this.

Convenient myths.

On a few occasions, after I’ve shared the story of Saagar’s brief illness and sudden death in public, one or two individuals, often men, who’ve possibly been through their own difficulties, have said that there was nothing I or anyone could have done to stop him. I know they mean well and speak from experience. I appreciate them reaching out to me.

For a few microseconds, on rare occasions, I have told myself that may be it’s true that Saagar’s death was not preventable. I have felt my shoulders relax, my tummy unknot and my mind quieten.

Life would be so much easier if I could believe/ accept/ give in to the concept that no matter what, Saagar’s death was inevitable. That the planets were misaligned and his demons got the better of him. That this was his destiny and it was ‘written’ in the balance sheet of his karma. Life would be easy if I could be complete with the fact that many people with depression/ Bipolar/ other mental illnesses will die young. Sometimes within 10 weeks of their diagnosis. What if I changed my outlook so I could have peace?

What if 3 decades ago everyone accepted that people who got AIDS would be dead within a few months or years. And then nothing more was done about it. That’s just the way it was and that’s how it would stay. Would we reach the stage where we are today, where thousands of individuals lead near normal lives for decades on regular medication, where HIV is not passed on from a carrier to another if the former’s viral load is sufficiently low.

Today, in the UK, cancer care is excellent and cancer research is huge. Anyone who gets diagnosed with cancer can be sure to get prompt and high quality specialist care for as long as needed. So much so that if a child is diagnosed with cancer, the parents automatically get assigned a therapist. We have come a long way.

On the other hand, if a child or an adolescent gets a mental illness, the patient can barely get the attention they need. Never mind the parents. It can hardly be a co-incidence that all the bereaved parents I meet are certain that more could’ve been done to help their child. Not all of them are deluded. Or are they?

Here’s Robert and Linda’s story. They sadly lost their talented young son Richard Wade. They too believe his death was preventable. https://www.youtube.com/watch?v=FofR47rM1BQ

The more we ‘accept’ that these young deaths are inevitable (as the myth goes) the more we keep quiet, the less likely it is that things will change. Accepting might be the wiser thing to do. It might be better for our mind but it may also contribute to future deaths. The easy road may be the wrong road.

We’ve reached 41% of the funds we need to complete the film, 1000 days. Please help us release this film so we can bust some of the myths that surround suicide and bring this subject into society’s consciousness.

Click on: https://www.indiegogo.com/projects/1000-days

A big fat THANKS to all of you for being a constant source of strength for me.

Mind the Gap

 You are 28.
 Married 4 years. 
 No babies yet?
 Your mum’s bursting with unspoken questions. 
 The answer arrives finally. 
 A perfectly miraculous baby.
 Born to you, so ordinary. 
  
 He’s way beyond your dreams.
 Your life’s now embellished. 
 He’s much loved and cherished.
 First grandson on both sides.
 That smile! Those cackles!
 Those big bright brown eyes!
  
 He can’t wait to grow up.
 As if in a big hurry, 
 He rushes into walking, talking.
 Loving mangoes and chicken curry.
  
 You work hard for your family. 
 That’s the way you’ve learnt to be.
 From the life of your Papa and Mummy. 
  
 He thrives. 
 Multiple moves
 He survives. 
 So many new houses, schools and friends.
 So many new towns, cities and trends. 
 He takes all of them in his stride.
 Builds up a repertoire of languages 
 from far and wide.
  
 He learns to play the drums
 Lovely unfamiliar melodies he hums.
 Spinning red cricket balls on summer afternoons.
 Reveling at night to heavy rock tunes. 
  
 You split your sides 
 with his impressions of accents 
 and caricatures of the brown, the black, 
 the yellow and the white.
  
 Paul Choudhary and Russell Peter.
 He loves their comedy.
 Their lines he recites to perfection
 At every opportunity. 
  
 Two things delight him most – friends and food.
 Stars at GCSEs and A levels come easy. 
 He’s quiet the dude.
  
 Uni takes him away to Durham.
 You miss his laugh, his wit and his hum.
 You find it painful to cook for one.
 And long for his cocktail –
 The old-fashioned rum.
  
 Two years go by.
 You think you are learning to comply.
 The holidays come by.
 Each and every moment you enjoy. 
 One day his closest friend, Hugo calls to say,
 “The guy I’ve known most of my life? 
 Saagar is not that guy.”
  
 The summer soon turns scary.
 You find yourselves in A&E.
 His laughter replaced with 
 Anger and paranoia.
 The Liason Psychiatrist calls it ‘hypomania’. 
  
 He starts him on ‘Olanzepine’.
 Puts him under the Home Treatment Team.
 They keep you well out of the scheme.
 They know what’s best for him. 
  
 Two weeks pass.
 He responds well to the pill. 
 He’s told he has Bipolar Disorder.
 You’re told nothing. Nil. 
  
 As his mood returns to somewhat normal,
 He wants to return to University.
 He is discharged to your GP.
  
 The GP receives a discharge letter.
 With no diagnosis. 
 No mention of signs of getting worse 
 Or better. 
 No list of warning signs.
 No safety plans or designs. 
 He’s just another number to quote. 
 A delivery note. Completed in rote. 
  
 He went back to Uni but just for 2 days.
 His mood slumped.
 He is too quiet. You are stumped. 
 At the next visit to the GP
 You describe his sadness.
 You are weepy.
 Then you hear the wise doc say
 Take more pills, Citalopram and go away.
 In 3 or 4 weeks
 They will start to play.
 Wait.
 Rome was not built in one day. 
  
 “Would you please refer him back to the psychiatrists? You plead.
 “They will do exactly what I am doing.” Says he.
 “This is not the first time I’m treating someone like this.”
 Take this slip please.
 You remember the look on his face.
 It’s now clear
 As if in front of you right here.
 The lines you thought were concern,
 Were fear.
  
 As advised, you go for walks and have a routine.
 Weekly CBT, daily gym, nice food and TV. 
  
 Multiple episodes of ‘Office’ and ‘Friends’
 Didn’t bring about any upward trends.
  
 He is but a hollow shell.
 You don’t know what to do. 
 Who to tell?
  
 This is your NHS.
 It’s honest and good.
 You know it. 
 It’s you. 
 May be waiting is the best thing to do.
 If they say he’ll get better
 It must be true. 
  
 One Thursday afternoon you return from work.
 An A4 sheet lies flat on the fourth step from the door 
 “Sorry. I can’t take this any more.”
  
 The hand writing unmistakable.
 The implications unthinkable.
 A dash upstairs. Screaming his name.
 A call to 999. 
 He’s only a child. A sweet child. 
 And he’s not well. 
 Surely they’ll find him.
 All will be swell. 
  
 Standing bare feet 
 in the middle of the street
 A festival of autumn all around me
 Red, orange, ochre and green. 
 A car pulls up in front of our house.
 Two uniformed men with his
 Keys and wallet … talk about
 Black hair…
 Brown skin …
 Grey hoody with a penguin …
  
 No one said anything about death or suicide
 What was there to hide?
 10 weeks from the first hospital visit.
 2 days from the last GP visit. 
  
 Later you find out they knew.
 But they didn’t tell you.
 And they didn’t know what to do.
 They sent him home with you.
  
 They call it ‘Care in the community’.
 Do we know the difference between 
 Treatment and care?
 If this is your community,
 What a pity!
 These are your colleagues.
 You trust them implicitly.
 With your baby. 
 Like they would have trusted me.
  
 I grieve for his guilt,
 His shame, his self-blame.
 Him. All alone. Forlorn.
 His quiet desperation.
 Separation.
 His terror. His fright.
 Night after night.
 Misunderstood.
 Behind a hood. 
 No one should have to suffer so.
 Nobody.  
  
 “To be or not to be” 
 That comes up for me.
 Time goes round and round pointlessly
 Never too far from complete insanity.
 Oh! The finality.
 I wonder if this is a movie or reality? 
  
 The official investigation says 
 everything was 'thorough and reasonable' 
 despite all the missing bits and 
 complete lack of clarity.
  
 The doctor stands up in Coroner’s court 
 and announces boldly
 “Suicides are not predictable or preventable.”
 I shudder in disbelief. Here stands a lay person.
 The only one who could have helped.
 I marvel at Saagar for staying alive 
 for as long as he did. 
  
 The Coroner sees the gaping holes 
 that swallowed him alive.
 Same old themes.
 Listening to understand.
 Communication. 
 Closing the loop. 
 Meaningful sharing of information.
  
She asked the Service Improvement manager of the distinguished Mental hospital what he would do to make things better.
He said he would discuss it at the next Business meeting and then spewed such jargon that I could have puked all over the floor of that spotless court room.
  
 I meet with other parents of deep loss.
 Story upon story of utter tragedy.
 Avoidable, preventable travesty.
 Immense outrage and consternation.
 Let’s start afresh with compassion. 
  
 They say when something good happens, learn.
 When something bad happens, learn.
 At a random conference, over coffee,
 I shared Saagar’s story 
 with a seasoned doctor of Psychiatry.
 He said plainly 
”This has been happening as far back as my memory ... ”
  
 I read somewhere:
  
 The opposite of love in not hate.
 It’s indifference.
 The opposite of art is not ugliness.
 It’s indifference.
 The opposite of faith is not heresy.
 It’s indifference.
 The opposite of life is not death.
 It’s indifference. 
  
 I questioned everything about me.
 Every decision, every word spoken, unspoken.
 Every move. Every choice.  
 I even questioned our love.
 But I learnt.
 I learnt to write. To speak. 
 I learnt that there is no ‘they’ or ‘thee’
 No ‘you’ and ‘me’.
 There is no other.
 It’s just ‘us’ and ‘we’.
 Saagar was our future. Our own. Our community. 
  
 Despite everything, I’m learning to love me.
  
 Did the others learn anything?
 Did my son, your son die of nothing. For nothing?
  
 No. There is a Saagar shaped hole in my heart.
 There is an Ed shaped hole in the NHS.
 There is a James shaped hole in A&E.
 At least seven thousand and fifty 
 more holes in the world since Saagar. 
 And rising.
 There are too many holes in this net. 
 In fact, there is no net.
 Just gaps.
 So, one and all, Mind the Gaps.
 And let’s please begin
 To close them in.  

[ Please support this film: https://igg.me/at/1000days ]