understanding

Unspeakable.

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Age: 82 years.

Sex: Male

Residence: Bed number 19. Intensive Care Unit.

Duration of stay: 70 days and on-going.

Last heard speaking 68 days ago.

Up and down with repeated pneumonias, rising and falling need for support with breathing and blood pressure, weeks of starting and stopping a plethora of antibiotics, kidneys pushed to their limits, sepsis coming and going, metabolic state constantly fighting off infections. This goes on and on and we, his family go up and down with him. In between spells of invasions by nasty bugs, he mouths words, some of which we can decipher and some we can’t. It’s excruciating on both sides when he gives up after a few times of trying to be understood.

“I want to speak.”

Last evening, he insisted silently, sitting up in his hospital bed. His lips firmly formed the shapes of those words. After a quick consultation with the doctor in-charge, we arranged a brief attempt to enable him to speak. We did the appropriate suctions, explained everything to him and blocked his tracheostomy manually with a thumb covered in a sterile glove, to enable the small amount of air in his lungs to leave through his vocal cords, which have not been used for nearly ten weeks.

This man who used to have a big voice, spoke four languages and sang sweet songs had been rendered wordless. In a somewhat broken, hoarse, unrecognisable semi-voice he whispered, “I am trying.”

There were tears. Lots of them. Of love and all the unspeakable stuff.

His eyes were two bright lamps in a poor man’s hut. Oh! To be understood!

Meeting old friends for the first time.

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Meeting old friends for the first time. In at least three dimensions. Sharing a physical space together, not just a bland rectangular screen. Actually holding hands.

“Gosh! You’re for real!”

The sparkling smiles of recognition mixed with disbelief. The hugs offering heart to heart resuscitation and healing. Sitting down side by side on the sofa, sharing stories, tea and cake.

A year ago, this could have been fiction but last weekend it was fact. While volunteering at a retreat for Bereaved parents hosted by The Compassionate Friends, we finally met people we’ve only ever seen on Zoom. It was held at the simple and serene Woodbrooke Centre, a Georgian manor house in Selly Oak, Birmingham with tall trees, beautiful flower beds and a family of geese perambulating the grounds, intermittently honking. It is a Quaker centre and has a poster in the main foyer which reads “Nameless helping the Nameless”.

The garden in front of the main house has a labyrinth mowed into it. Early on Saturday morning, birds were singing and the light was inviting me into the open. I decided to walk bare feet into the center of the labyrinth. I took my shoes and socks off at the edge of the circle. As soon as I started walking, it turned into an extremely mindful experience as the ground was littered with geese droppings.

The silence in that place was sweet and the views a treat. We talked about the importance of finding meaning. We shared the joys and challenges of taking the inward road. We watched a film and sang together. We wrote from our hearts and created pretty little candle holders for our kids from jam jars at the crafts table. We cried and laughed, reassured that in this company, it was completely acceptable to do both, sometimes simultaneously.

A pleasant exchange. Giving and receiving with compassion. Understanding. Belonging. Learning. Holding the utter magnificence of life in one hand and the absolute devastation in another. That’s what this game is all about, I guess.

Only one race.

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You are not your body. Who you are has nothing to do with how you look.

You are not your mind, your thoughts, your feelings or your memories. All those things are aspects of you but they are not you. They change from moment to moment. Thoughts come and go. Feelings mould. Thousands of old cells are shed and replaced by new ones every second.

During my training to be a doctor, I had to dissect a human body. It was an enlightening experience. On my first day at medical school, it was a shock – the massive Anatomy hall reeking of Formalin, 12 metallic rectangular tables, each occupied by a horizontal human form covered with a white cotton sheet. 4 students in alphabetical order, to a table/ body. All different but more or less the same, students and bodies. Mine was a dark skinned, muscular young man in his thirties. I wondered how he had landed up on this table in the heart of Punjab when he clearly belonged somewhere else. I wondered what his story was.

As I carefully peeled the skin off, a pale yellow silky layer unraveled itself. I peeked at the next table and it was the same. And the next and the next. Men and women, old and young, squat and fit, brown and black. Whatever on the outside, were the same just underneath.

We laugh and cry the same salty tears, we feel the same love, we yawn and sneeze and hiccup and breath the same way. We all are distinct and yet, more or less the same. We are all made up of a substance called ‘love’. We carry the whole Universe inside of us.  We are bundles of boundless cosmic energy. Our bodies are vehicles for us to experience this Earth and for this fantastic energy to express itself. Let us not allow anyone to tell us how we should look, as their vision may be limited. Be fully expressed. Don’t let their limitation be yours. You are whole and complete, just the way you are, no matter what anyone says. Don’t let anyone let you love yourself any less than one thousand percent. Your love and compassion for yourself is the source of all joy for all humanity.

Just as black people are so much more than just black and homosexuals are so much more than just that. And Saagar was so much more than just a handsome brown young man. Underneath, we all are human. We have the privilege of coming from the most gorgeous star. Our numbers are higher than ever before and our potential as a race is the highest it has ever been. At a time when we need more cohesion between humans than ever before, we are building divisions all over the world – us and them. Be it the colour of our skin, our religious convictions, our gender, our choice of sexual partners or our private medical choices. We need bridges, not walls. We need to see ourselves in others and them in us – vulnerable, tough and unique at the same time. Everyone. Absolutely everyone.

I say to all you planning and scheming and dreaming, defending, proving, and justifying, laughing, crying, and feeling people, wanting love and understanding, offering love and understanding people:

 “You be me.  I be you.  They be us. We be them. All be one. Love be all. All be love. Only love. Get down on it.”

Changing the Conversation.

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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

Blue Rose

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She was the colour of almonds. Her smile so bright, it made the sun shine. Her hair waist-length, wavy and a very dark brown, like a heavy veil down her back. Her petite frame, shy, smelt of sandalwood. She was only 19.

Her friends had rebellious red, pink and green highlights in their hair. Some had happy multi-coloured beads and braids woven in. Others had playful ribbons platted in, like flower-girls at hippie weddings. She sat on her aquamarine blue sofa with her laptop, peering through colour-charts. She wanted her hair dip-dyed. She hadn’t picked a colour yet.

It was going to cost a bit but her mum had agreed to pay for it. She often did.

When alone in her room, unable to sleep at 2 am, Rose had looked up Helium and what it does. She didn’t know why. It was an involuntary act. It was nonsensical. Her body and mind were no longer of her.

Her hair appointment was in a couple of hours. She had to decide now. It was important she got this right. It was an expensive decision. The staid Royal blue or the scintillating Moroccan Turquoise? Silky peacock blue or the majestic sapphire? She wanted a straight horizontal line to run right across the dark sheet of her hair. The bottom one-third of the length a startling shade of blue, like a designer curtain.

She played classical music on the violin. Her ears didn’t particularly savour the Blues. They jarred her. She didn’t have a taste for blueberries. She preferred the ‘rasp’ variety with big dollops of double cream. Her wardrobe was a smattering of whites, pinks and reds. No blues there either, except the denim jeans and shorts. She was a proper girlie-girl. Blue skies made her spirits soar. But they left blue stains on her heart. She hid them like children hide pretty pebbles in corners of drawers. Her smile kept feeding the sun through the blueness.

She hand-wrote letters to the people she shared the house with, in blue ink. To her mother she said how wonderful a mum she was and she should take better care of herself. To her sister she expressed her appreciation for her companionship, friendship and laughter. Her little brother never left her side. She never turned down his invitation to play any kind of silly game with him. The dogs were all hers. They didn’t know they weighed as much as her. She had to sit down when they clambered all over her saying ‘we love you’.

The blue stains on her heart were expanding like drops of ink drip-dripping on a white blotting paper. She knew it was happening but didn’t know what it was. It’s creepiness had no name. It made her want to escape. It compelled her thoughts to convince her that her deepest desire was to implode. She had no say in the matter. It made her hands look up Helium on the internet. It kept her eyes wide open at night. It made her tummy churn, her legs restless and her head hurt. She now had 2 hearts and she moved between them. One blue. The other not. One wanting out. The other wanting blue hair.

“I am finding this difficult Mum.”

‘We need to leave in about 20 minutes for the hair-dressers my darling.’

“Yes. I am thinking about it … looking up the options on the internet.”

‘Good idea. We can take your laptop with us. I am sure the hair-dressers will have some ideas for you. Don’t worry.’

“I have some ideas but haven’t decided yet.”

‘Take your time. No rush.’

Midnight blue was the final choice. She was happy.

Over the next year that wretched blue embedded deeper into her heart and from there, leached into every cell of her body. Then it burst out, released itself and merged back into the midnight, the sky, the ocean.

That was 5 years ago. Till this day, her mother’s mind twists into painful knots when she remembers that day. How could her lovely Rose have wanted to live with blue hair and at the same time, to not live at all? At nineteen! How?

No one knows. Sometimes it’s like that.

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A video for every parent: https://www.youtube.com/watch?v=3BByqa7bhto

Day 896

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I thought I was going to be alone this week as Si was away. But someone made sure I didn’t feel alone. 

This creature showed up at my bedside every morning to say good-morning. He hardly left home while I was around, which is very out of character as he is a certified vagabond. As I chopped tomatoes at the kitchen table, he sat there watching me. When I came home from work, he greeted me at the door, brushing up against my legs with affection. When I woke up from a nap on the sofa, I found him snoozing on the arm chair next to me. As I sorted out the washing, he snooped around in the same space. As I changed the bed linen he jumped from one side of the room to the other. He scuttled around me, inviting me to play with him. When I spoke to him, he responded not just appropriately, but affectionately. At bed time he nearly came up to me with his Pyjamas tucked under his arm and had to be shooed off. 

We listened to music together. We watched the TV. We chilled out. We cuddled. We even had a few deep and meaningful conversations. 

It was fun hanging out with Milkshake.