‘My child is dying – but my life is still filled with joy’

At just three years old, Dr Tanmeet Sethi’s son, Zubin, was diagnosed with duchenne muscular dystrophy (DMD), a progressive, muscle wasting disease that will eventually kill him.

At the time of hearing this catastrophic news, she was also nine months pregnant, and had a one-and-a-half-year-old to look after.

Yet, despite suffering every parent’s worst nightmare, Tanmeet has decided to dedicate her life and career to exploring an unexpected topic: joy.

‘Despite my grief and cultural guilt that a mother should not be joyful if her child is dying, I know joy is a powerful medicine,’ she tells Metro.co.uk. ‘Joy is my justice.’

There is no cure for DMD, which Tanmeet explains is like ‘ALS or motor neurone disease for children’. It only affects boys, and those diagnosed usually die by or during their 30s.

After Zubin’s diagnosis, Tanmeet went on a journey to discover how to find fulfilment and happiness, even when faced with life’s darkest, most traumatising challenges.

She uses her own findings to cling on to joy, even while caring for a terminally ill child with complex health needs.

‘Every footstep you take toward joy is a radical act that defies the oppressive weight of your pain, and creates a powerful change in your biochemistry,’ says Tanmeet, who’s an an integrative family medicine doctor and clinical associate professor at the University of Washington School of Medicine.

‘Joy is an innate human right accessible to all.’

Author of a new bestselling book, Joy is My Justice: Reclaim What is Yours, she has spent the last twenty-five years working in primary care with people affected by global trauma.

Here, Metro.co.uk talks to Tanmeet about how we find joy in our own lives.

How do you define joy?

Everyone’s version of joy is different, but you feel it. Your body gives you signals that you have stepped into it. Allow yourself to feel it in every part of your body.

The more you soak in that joy, the more you signal neurochemicals like dopamine – then you notice joy as something you want more of. Think about, when was the last time you felt joyful? If you hadn’t felt joy in a long time, think back to when it was present, and in what moments? What were you doing? And if you can’t remember, imagine what it would feel like?

Write it down, describe it with as many senses as possible, put it up on a post-it note where you can see it and believe you can have it. Maybe it’s in a piece of art or a photograph. Make a joy wall or space in your home where you can remind yourself regularly.

What is the difference between happiness and joy?

Happiness is a cognitive construct, an evaluation of how life is going. Joy is not intellectual. Joy is not wishing things were different, or getting rid of the hard things. It’s not a commodity you seek in a luxurious spa. Joy lives inside of you and expands the time you already have, it’s an infinite inner resource.

How can you learn to be more joyful?

The vagus nerve is longest nerve in the body and it’s a nerve that not only creates relaxation and calm by activating the parasympathetic nervous system, but it’s a nerve that stimulates our desire to connect. It helps us find calm or ease and allows us the impetus to want to care for others or care for ourselves. If we’re in a state of flight or flight or have a sense of threat or  overwhelm, our body is not looking for connection, our body is looking to get the hell out of there. And when we are activating and regulating our nervous system in these potent ways, we are actually saying to our body, you are safe, you can stand down, you are okay right now.

The vagus nerve is 80 per cent afferent, which is fancy speak for 80 per cent of its fibers are coming from the body to the brain, and not the reverse. In fact, the heart and the gut have been described in mainstream medical literature as each literally having their own brain. This translates into: what you do in your body rewrites how your brain interprets and translates your life.

So how can we connect best with our body when our minds are filled with worries or fears?

I would encourage you to dance. When was the last time you danced? Dancing is primal, and music has the power to move us. I tell my most depressed patients who cannot get out of bed to start by just turning on the music. And keep turning it on until the music inspires you to get out of bed.

Also, reach out and hug people. Humans are wired for touch. It’s how you comfort a baby or a friend. The science of touch shows that touch promotes the secretion of oxytocin, soothes you, and makes you want to connect to others. Functional MRI studies show when patients anticipate threat or stress, those areas of the brain that light up are turned off when they are touched by a partner. Touch that makes you feel safe and loved turns off threat.

Life can be difficult, is trying to be joyful setting yourself up for failure?

The greater your pain, the more necessary it is for you to find your way to emotions such as joy, hope and love. Each time you connect to the universal energy of joy, you create a deeper sense of belonging and connection to this world. Joy is your defiant battle cry.

What advice do you have to face difficult challenges in your life?

You need to change the story from, ‘Why me?’ to ‘Why not me?’ If you love, if you live, you will hurt. Many wisdom traditions teach this simple premise.

In a timeless Buddhist story, a woman stricken with grief over the death of her first-born child searches for someone who can bring her child back to life. She is taken to the Buddha who says he can help her if she brings him mustard seeds from a home where they have not experienced loss through death. She is unable to find such a home and returns humbled.

As the Buddha explains, if you expect only happiness, you will be disappointed. Each time you change the ‘Why me?’ story, to ‘Why not me?’, you soften resistance to the life in front of you.

It can work the other way too. If you are someone who has resisted joy for far too long and believe either you don’t deserve it, or you feel guilty experiencing moments of joy when others do not, it is also time to say out loud ‘Why not me?’ You can feel joy too. Claim it!

How do you do that?

Again, use your body. Amy Cuddy is highly acclaimed psychologist who studies the science behind the use of body language to change the way you feel and think. She says expansiveness – which I equate to a ‘Why not me?’ posture is not just an expression of power but a cause of your power.

In her work she shows that when people take on a more powerful expansive pose for just two minutes, they make changes in their biochemistry, such as a reduction in stress hormones.  

But most important, the pose affects behaviour. When you stand – hands on hips, shoulders back, you feel more confident, optimistic and creative. When life feels unfair, when you feel either subjugated by systems or the pain of your life’s losses and tragedies, you feel smaller instead of larger. But when you reclaim emboldening physical stances, you can see your body as a source of personal and social power.

How can we practice this?

Think of a challenge you are facing, small or large, right now in your life. And say to yourself, ‘Why not me?’ out loud. Notice the difference in your body when you ask each question. When I say, ‘Why me?’ I’m in a contracted, powerless shape, I play victim.

When I say, ‘Why not me?’ I stand in a place of power, straighter, chest out, legs apart, planted on the earth as if to say this universe, ‘I hear you and still I stand up strong’.

Standing big and wide can change how you see the world as one that is more loving and kinder, instead of one that is ready to take advantage of you. This tool is not about shifting changing your thoughts as many self-help dictums prescribe, this is about shifting the way you step into the world so you can inhabit it differently and then take up the space you were meant to.

Do you have a story to share?

Get in touch by emailing MetroLifestyleTeam@Metro.co.uk.

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