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 ]
58 months. Nearly 5 years.
And still, the first thoughts in the morning that rush into me to invade and occupy my conscious mind are those of Saagar. Like multiple grey moths stuck on the dark walls of my room, waiting. Then hurtling into my head the moment the light in there is turned on. Bringing in the darkness with them.
Everyday. Still. Sure as the morning, the sunrise. The thoughts. The moths. The darkness.
A mantra I created for myself, for distraction, salvation: “Thank you for this day. Thank you for Si, my family and friends. Thank you for Saagar.”
Often times it works. Sometimes its impotent. Useless.
I need to find a way to get out of bed without a dagger being struck in my throat even before I’ve opened my eyes. I speak to some learned people and they tell me to make a slight shift. They say that everyone comes into this world to experience X amount of happiness and Y amount of sorrow. So, when I think of Saagar, I should think not just of the suffering but also the love and joy in his life. I shall do this tomorrow morning. The moment my sleep is over. I will.
Tonight I share this link with you. It is the link to the promotional pages for the short film I mentioned the last time. It will be called “1000 days”. It hopes to cause a tiny shift in those who might watch it. Collectively, they all might bring about multiple small shifts towards greater connectedness in our world. The aims of the film are to:
1. Educate people that many suicides are preventable.
2. Empower everyone to ask for and offer help, hope and understanding.
3. Enable all of us to feel less alone.
Your support is invaluable. Thank you for being here. Your contribution might save a life. Good night. xxx
The first time I saw Jeanette, she was acting in a play called ‘Hearing Things’ being staged at South London and Maudsley (SLaM) Hospital, where Saagar received (inadequate) treatment. The play was inspired by events and conversations from real ward rounds of patients with serious mental illnesses. It was written by the playwright often described by critics as the ‘English Chekhov’- Philip Osment, well known for giving a voice to those at the margins of society.
The play highlighted harsh facts through a story sensitively told. Just three actors illuminated the wide swathes of blurred lines between sanity and insanity, between the healer and the ill, between strength and fragility. I learnt a lot from it. It was a powerful blast that left me thinking about my roles as an ordinary member of society, a doctor, a mother, a patient. It gave me an insight into how and why the system does and does not work. I thought it gave me a little peek into Saagar’s mind. It certainly made me feel utterly close to him in an unearthly compassionate way.
A few weeks later I arranged to meet with Jeanette. I trusted her even before I knew her. She listened. We talked for a long time. She read the blog. I suggested a documentary. I spoke with some of Saagar’s friends and they wanted to participate. So was Si. We all had something to say. Ron and Jeanette filmed it last year.
This year we aim to complete it and release it. We have a name – ‘1000 days’. We have found a suitable and brilliant editor. We need to find some platforms to showcase it and we will. We are working on a crowd-funding campaign which will be launched within the next 10 days. The intention is to make this world a kinder and more understanding place. Watch this space.
Many thanks in advance.
10 weeks back I was surprised to find an all-day course in ‘Mindful Self-Compassion’ for Health Professionals advertised on the Trust intranet. It sounded great and it was for free. Wow! We are recognising the pressures on health care professionals and moving slowly but surely in the right direction. To organise a course like this and make it available to all staff at no cost is nothing less than super-fantastic.
I enrolled instantly and waited patiently for the day to arrive. The day arrived. I entered the room to find all these items scattered neatly around the room: a bowl of smooth tactile pebbles in purple, maroon, white and yellow, little bottles of lavender and vanilla extracts, fantastical eye-catching postcards, maracas and manjiras, a white rosary in a tiny wooden box, sketch pads with charcoal tree sticks, a bunch of sea shells, sprigs of fresh rosemary and mint, a dried corn on the cob, a few white and brown feathers, a spongy red ball and a spiky yellow plastic one, a tiny hand-crank music box and an hour-glass with pink sand. These things were for us to appreciate, touch, feel, smell and listen to.
Two gentle young women led the day taking great care of everyone in the room and in complete harmony with each other. We started with a ‘soft landing’ – becoming aware of our feet on the floor, bum on chair, our breath and our finger tips. They called these short snatches of peace, the ‘green moments’. We were encouraged to create/access these green moments to transition from seeing one patient to the next or from work to home mode and vice versa.
The word ‘discernment’ was brought into my awareness. While the dictionary meaning of it is “the ability to judge well”, we were encouraged to scan our thoughts and ‘notice what’s not helpful’. It was a useful concept. It helped me locate stuff that was unnecessarily cluttering up my mind and blocking light from entering this sacred space.
I remembered that as a teenager I had a big scrap book filled with my collection of feathers of all kinds, my favourite being the peacock feather. Where did that dreamy girl with 2 pig-tails go?
For a while I could hold the little girl in me lovingly in my arms and marvel at her innocence and beauty, appreciate her child-like sense of wonder and creativity. This sweet girl is me. Perfect and complete in every way. All she needed was to be seen. By me.
Last week I met Matt. A young man, calmly determined to share his story and open up a rainbow that would envelop the world and knit it closer together. A story of a glorious love, a damning shame and a tragic unnecessary death.
Matt and Naz met in Birmingham in the year 2000 and instantly fell in love. Matt Ogston and Dr Nazim Mahmood. Both men. Men in love. They tried having a relationship in that city but knew that if they wanted to live like normal people doing normal things, they’d have to move away. So, they did. Over the next 13 years they built and lived a fulfilled and happy life together in London. All this time they managed to hide their gayness from Naz’s family as it was guaranteed to create unhappiness.
One weekend Naz needed to go back to Birmingham for a family event. The question of his sexuality came up and he spoke the truth. As expected, his family reacted badly. He was told that he was living in ‘sin’ and his ‘condition’ was treatable. I cannot imagine how he must have felt. Deeply humiliated I guess. That day he must have known that now, he could never be the man he was born to be. His love for his fiancé would always be seen as sin by others he deeply loved.
He returned to London. To Matt. Two days later he ended his life.
In his utter devastation, Matt found the determination to do what he could, to stop religion from getting in the way of love. He set up the Naz and Matt Foundation.
“Our mission is to never let religion, any religion, come in the way of the unconditional love between parents and their children.”
7 am. Monday. South-east England.
From the window of an inbound aeroplane, they look like moving lines changing texture every second. Demarcating hedges, rail tracks, rivers and roads run around in graceful undulating curves. These lines pass between patches of all forty shades of green. And some dry brown ones and watery blue ones. A silver set of solar panels glitters like a massive diamond. Imperfect squares and rectangles are juxtaposed like patches on an applique quilt. Thickets in rough triangular shapes fit neatly into corners. Multitudes to houses sit snugly like school kids in tidy rows. Each house, home to multitudes of stories.
The City is poised at the start line. London, in a state of fresh awareness. The sun is shining. Commuters are rumbling, making their way to the nearest train station, bus-stop, car or bike. Multi-coloured bicycles and black motorcyclists wriggle about in clusters. The air is cool. The smoke is gathering. It hasn’t formed a blanket yet. A hum in the background holds at a fixed, non-descript pitch. Jarring sirens of police and ambulances intercept at regular intervals. The stirrings of people, shaking the City. Millions of people in organised chaos, moving over and under the ground.
I draw the curtains aside, to a dream morning for a bike ride. Gentle breeze and soft sun. I glug the smoothie I prepared last night. Pull on my cycling gear. My body wanting to jump on to the bike this second. Put my stuff into the pannier bag that I should have bought ages ago. Remember to wear my helmet before the gloves. Remember to lock the house. Switch on the lights on the bike. Put on my yellow high-vis jacket. Say a silent prayer. And take off. Gear up. 1-1. 1-2. 1-3. 2-3. 2-6. 3-3 … The down-slope after the first right turn brings the morning air face to face with me and I am flying. Levitating. Floating blissfully to work. Lost in the rhythm of my breath going in and out. Feeling my legs going round and round in meditative circles. All my senses awakened. In this second, I am free. And so lucky to be alive!
One morning, despite severe inertia and amplified gravity, I carried my body through treacle to a yoga lesson nearby. Once I got there, the music, the incense, the light, the chanting, the breathing and the presence of other people lightened me up and I got into the groove.
I became the rhythm of my breath and the simultaneous harmonious dance of the body with the breath. Each posture pushed me just a little bit outside my comfort zone and the energy started to shift and flow. Before I knew it one hour was up. As we were finishing off the session with a short meditation, Felix, the teacher said “Dedicate your practice to someone you love.”
In that moment, tears sprung out in rivers. Out of nowhere, all on their own accord, they flooded me. I lay in the corpse pose (shavasana) and the warmth of my tears continued to soak the hair at both my temples.
Just then a set of 4 light soft paws, one by one stepped on to my tummy. I am familiar with the weight and size of such paws due to our feline, Milkshake’s nightly visits. Instantly, I broke into a smile. I lifted my head and opened one eye. A black cat that had been lazing on a sofa previously had made itself comfortable on top of me, rolled up into a ball. The fuzzy warmth of that circle travelled all the way to my heart. I sat up and cuddled it, stroked it and thanked it for reaching out to me. It was gracious enough to let me. Love was boomeranging.