being human

Times six.

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Two summers ago, on a dry Saturday morning in London, Si and I set out for a walk. We headed to our local park, Streatham Common. As we took a turn into the Rookery, we noticed a young man sitting on the third step of the wide, well-trodden staircase descending towards the South-East. He held his bent head in both his hands.

An invitation.

I took a deep breath, softly stepped up to him with a ‘Hi. Good morning.’ He slowly raised his head and mirrored back my faint smile. None of our smiles reached our eyes. They were not real yet, only polite.

We got talking and forgot about the walking. Miles was in his late thirties, a father of two. He had been unable to work for a few months because of disabling symptoms that suggested something like Chronic Fatigue/ ME/ Long Covid. Of late his stress levels had rocketed as his employer had started suggesting ‘malingering’ in his letters. Even though his GP understood and validated his medical condition, his employer showed no understanding.

We gathered for coffee in the park on two more occasions that year. We enjoyed our chats, kept in touch and met up regularly even though not frequently. This year, he tells us he has been dismissed from his job after a “fair process” for “gross misconduct” for being physically and mentally unable to work. Gross misconduct includes physical violence, theft and fraud, intoxicated while at work and similar serious offences.

A study at King’s College London looked at the causes of death in 2000 patients with CFS/ME conducted over the years, 2007-2013. A total of 17 patients died in that period – eight died from cancer, five from suicide, and four from other causes. When compared to the general population, less than one suicide would be expected in a study population of this size. Yet five deaths by suicide were recorded. This means that, after controlling for age and other factors, the rate of deaths by suicide in this study was approximately six times higher in people with CFS than in the general population.

The reasons for this vulnerability are – poor quality of life with no hope for relief, loss of employment, finances, and/or relationships, chronic pain, secondary depression, and other associated mental and/or physical illnesses.

Miles felt he was losing his sense of self as a capable human being with integrity. People didn’t always believe or understand him. Maybe he is what they called him, a malingerer. This is hard on his family, but they support him all they can. The kids are delightful. He still has good days and bad, still has serious brain fog he cannot work through sometimes, still can’t do much but he tries his best. He carries a lot of shame for this thing that happened to him. He feels trapped.

No tests can prove his diagnosis. No definitive treatment is available yet.

Resource: Action for ME: https://www.actionforme.org.uk/

Five times more likely.

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Queer youth are five times more likely to die by suicide. I did not know that. I knew nothing about Andrea Gibson until after their death earlier this week from Ovarian Cancer. Every word they wrote throbbed with a cry against injustice. They were an activist for tenderness, a warrior for the human heart. I have spent most of today reading her poems and they sing to me. Gibson lived deeply and spoke candidly about moments when things got too much for them.

“When your heart is broken, you plant seeds in the cracks and pray for rain.”

“Just to be clear,” they wrote, “I don’t want to get out without a broken heart. I intend to leave this life so shattered there’s gonna have to be a thousand separate heavens for all of my flying parts.”

Respect!

No mystique

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Sitting in mesmerising remoteness, I’ve been falling in love with Maya Angelou. Her words in this interview on The Paris Review have been singing in my ears and I am compelled to share the music as it resonates with the beat of my heart. And, is she funny or is she funny? Astounding combination of humour and profound fundamental human truths.

“We may encounter many defeats.” She says. “Maybe it’s imperative that we encounter the defeats. I don’t know. But we must not be defeated. I see people who haven’t gone through anything and you think, ‘Ah! Honey, go through something. Go through something.’

If I have a theme in my work, it is that we’re much stronger that we appear to be. And maybe much better than we allow ourselves to be. And that human beings are more alike than we are unalike. There’s no real mystique. Every human being, every Christian, every Jew, every backslider, every Muslim, every Shintoist, Zen Buddhist, atheist, agnostic, every human being want a nice place to live. A good place for the kids to go to school, healthy children, somebody to love, the courage, the unmitigated gall to accept love in return, some place to party on a Saturday or Sunday night and some place to perpetuate that God. There’s no mystique. None. And if I’m right in my work, that’s what my work says.”

Truly inspired. Love the sweet little made-up words like ‘unalike’. Thank you Ma’am.

For no reason at all.

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Andretta is a small village in the foothills of the Himalayas. It has been calling to us for the past five years. We’ve been working towards becoming able to take it up on its invitation and finally, we are here.

I return to my country, a stranger. I am not that young lady who left and this land is different from what it was when she left twenty-three years ago. It is noisier, busier and dirtier. People and houses everywhere. The national highways used to run through wide expanses of green and yellow fields but now they are lined with messy shops, workshops and warehouses. Overweight people used to be a rarity but now obesity is commonplace, even in kids and village folk. The forests are thinner and the weather full of surprises. The number of extreme rain events has risen three-fold since the beginning of the last century, possibly due to a warmer Arabian Sea.

It was in the last century that I ventured abroad. The dreams that lived in my eyes then, are a mere story now. Those dreams had to be dashed, so I could wake up. My heart had to be shattered before it could learn to be full. I had to be completely humiliated, before I could be truly humble.

Maybe it was necessary.

Fifty-four days ago, my father walked into a hospital for an operation that he believed would improve his quality of life. He has been unable to leave his hospital bed since. Every time I turn from one side to another in my sleep, I am aware that my father can’t do that. He needs help with nearly every activity of life. He’s aware of his predicament and we all are helpless. This helplessness is an old friend from a few years back. Looking back, it might have been better if he’d not had the operation but we don’t know for sure and it’s too late now. It could be worse. I could be better. It could be different.

I wonder why things happen as and when they do? Is this a question worth asking or is it completely pointless? Some questions are unanswerable no matter how frantically the logical mind looks for answers. There are none.

This is how it is. For no reason at all.