Photograph: Saijal Reahal with her mother, Bina

Saijal Reahal talks us through her struggle to come to terms with having a chronically ill mother and her visualisations and notions about death, versus those of people around her.

I was nine years old on my school sports day when I discovered my mum had an incurable autoimmune disease that she had kept from me since I was born. I only found out because I was crying that she was the only mum in my friendship group who did not volunteer to participate in the parents’ sack race (horrific, I know). She wiped my tears and said, “I’ll tell you later”.

At home, I learnt that it was lupus, and not lack of love, that made her think twice before throwing her delicate bones around.

I was heartbroken. I couldn’t fathom that an illness had rattled her bones, joints and several organs, that she felt fatigued most days, that it wasn’t safe for her to deliver a baby, and that in spite of all of this, she had barely told a soul, including me.

The day after, I envisioned her funeral. I fired out questions that were only permissible to be asked by a child: “Are you going to die?” “Will I get it and also die?” “How will Papa cope without you?” His cooking skills were, after all, only average at the time.

We created an environment where it was safe to speak about death, with hope, lightness and even humour.

Saijal Reahal

Over the years, I was repeatedly reassured. Whilst some days were tough for me, as an only child, and Papa, the strong medications meant Mum could enjoy a good quality of life, her attitude made her consider it a great quality of life… and Papa got better at cooking. We created an environment where it was safe to speak about death, with hope, lightness and even humour. I asked Mum how she would want her send-off to be to the level of detail of: casket open or closed, commiseration or celebration, and which one of her lipsticks I would wear.

The day she passed away at 61, 17 years after that sports day, was still unexpected. She complained of a more intense type of pain in the morning, and within a few hours she was gone. Given the way her illness had worked in the past, with good periods and bad periods, we thought we would get a bit more notice. But, I did feel like I had braced myself for losing her from all of our conversations, post-sack race. I focused my efforts on organising the funeral to do her justice. I would stick to our traditions as British Indian Sikhs, whilst making it colourful, majestic and different, to match her vibrant character.

However, support was not easy to garner from all family and friends. Some were sceptical about doing things in such an upbeat manner. They were not comfortable with the idea of wearing colour or bright lipstick as some of my cousins and I had planned to do in honour of Mum’s style. Having the casket closed also sparked some controversy; I got advised it may be seen as “exclusionary”. And I was told I was probably in shock or denial, especially as I had not cried after the initial 10-minute shock. I came to learn that I was not grieving the traditional way.

I believe talking about life, death and all the ugly bits in between, made coping with both a chronically ill family member and bereavement, easier.

Saijal Reahal

Across much of Indian culture, when someone dies, people will arrive almost immediately at the home to pay their respects. And when I say people, I mean everyone the deceased may have ever spoken to, even if they have not seen them in decades. Here, they will pray, talk and eat. This can go on for close to 24 hours a day until the funeral. Luckily, my aunties pretty much moved in and were resident chefs and chaiwalas, catering for the masses of guests and keeping everything spotless. The support of the community was beautiful and a testament to Mum’s people-adoring persona, but nobody prepares you for the gaping hole it leaves when everyone packs up and goes the day after the funeral.

It is also the norm for people to visibly exhibit that they are mourning – that equals showing face at the house, not wearing colour, weeping and even wailing. I found this hard to come to terms with, particularly with those who who were not close to Mum. The Sikh religion does not advocate the need for public, ritualised displays of mourning and, actually, encourages releasing yourself from your interpersonal attachments and letting the deceased go with dignity and good blessings for wherever their soul travels to next. Yet, it seems to be hard for people to break centuries-old “traditions”.

Over the course of the funeral planning to the day itself (which was exactly as splendid as I had wished for Mum), people became more relaxed and open-minded, myself included; after all, there is no right way to grieve. I think their initial discomfort stemmed from death still being a taboo in our culture, and wider society, until it happens – then everyone wants to know and be involved. I was able to talk about death and what happens next relatively freely in my household, but it can be considered morbid, inappropriate, improper.

I also reflected inwards. Perhaps my lack of tears was not so noble. I tried to show I was doing OK. I could not stand people vocalising their pity for losing my mother suddenly, especially at a younger age, when I was navigating my troublesome twenties and did not have a family of my own. My pride was reflective of Mum’s. She fought lupus for over 40 years but kept it a secret that she shared with very few people. I often encouraged her to blog about her experience from the lens of a South Asian sufferer, particularly as she had a science background and a PhD, but she refused. Neither of us, in times of physical or mental pain, wanted to appear weak and risk being gossiped about in the community. Being this vulnerable now is certainly daunting.

But, I believe talking about life, death and all the ugly bits in between, made coping with both a chronically ill family member and bereavement, easier. I have fond memories of Mum and I nattering away about her “loopy lupus”, the bruises she would get after blood tests and injections (“What’s this a map of, Mum?”) and that infamous sack race that changed the course of our mother-daughter dialogue forever.

Mum taught me that death is not the opposite of life; it is the consequence of life – of having breathed, experienced, felt and loved.

You can find more about Saijal’s story in Letters from the Grief Club, an anthology of short works from people who have been bereaved.

Saijal Reahal is a part-time Financial Services consultant and a full-time mental health advocate who has publicly spoken and written about her experiences with depression, trauma and grieving, and how she uses fashion and performance to heal herself. In 2019, Saijal lost her mother to complications of systemic lupus erythematosus, an autoimmune disease she had been suffering from for over 40 years. Through her writing, Saijal seeks to destigmatise and put some colour around chronic illness and death.

• Email: saijal.reahal@outlook.com
• Instagram: @page_of_saij

There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.

Continue the conversation at our Time to Talk events with film screenings, poetry readings, Death Cafes and much more.

Photograph: This Grief Thing Middlesbrough 2018 by Fevered Sleep

Following the devastating and sudden death of his sister, David Harradine, Co-Artistic Director and CEO of arts production company Fevered Sleep, launched This Grief Thing.

We live in a time when many people find grief impossible to talk about. David explains how This Grief Thing aims to normalise conversations about grief, helping people to support each other through a universal human experience.

It’s 24 November 2011, the night my life changed. 6:50pm, and I’m in my studio in London, editing a short film about ageing and time. My phone rings. My sister-in-law’s voice, “David… I don’t know how to tell you…”. In the background, my mum, wailing, screaming, pain. A sound I will never, ever forget.  “David… I don’t know how to tell you…”

On 24 November 2011, my life changed. My older sister, my closest sibling, had died in a car accident. Immobilised with shock, I called my partner. He came to collect me. We drove back to our flat. In the kitchen, I smashed things up. We got in the car, we drove up the A1 to my parent’s house in Yorkshire, the house where I grew up, and I stayed there for the next three months, in a house of grief, in shock, in my childhood bed, trying to help my parents, trying to come to terms with what had happened.

Again and again, we heard about invisible grief, unacknowledged grief, grief that had to be hidden, silenced, ignored. We talked about mourning clothes, about wearing black, or arm bands, about the different rituals in different cultures and religions and countries, all the different ways that grief could be worn on the surface of the body: “I’m still grieving: talk to me about it.”

David Harradine

During that time, I felt completely disconnected from my former life. I stopped working, focused completely on my parents and all the ways I might be able to help them survive this loss. Cooking for them, eating together, crying together, visiting my sister’s grave. I tried to fill the abyss that she had left behind; trying to take up the space of two children; trying to produce that much love.

For myself, I felt as though a veil had lifted, a veil that had been obscuring a whole emotional landscape that I didn’t know existed. A landscape of loss, and death, and grief; a landscape I was completely lost in, confused and angry and heartbroken; a landscape for which I had no map.

I am lucky. I work in the arts. I’m co-artistic director of an arts production company called Fevered Sleep. My friends and colleagues are in tune with their emotions, sensitive and articulate, and they were amazing; an amazing support, unafraid of my grief, it seemed; able and willing to acknowledge it. My mum had a very different experience: seeing people turn away when they saw her in the supermarket; going out for coffee with friends who didn’t ask her how she was. As though being a grieving mother was a disease, something contagious, something to avoid. Or something just too awful to acknowledge. But one by one by one, my friends also stopped asking how I was, how my parents were; stopped asking about my sister. After a few months, everybody else seemed to be back to business as usual. Me? I was still in the thick of grief, still in shock, still bewildered, and increasingly angry and disappointed that those people who had been so amazing at the start had one by one by one forgotten to ask how I was; had forgotten how to see and acknowledge my grief.

One day I said to Sam Butler, Fevered Sleep’s other artistic director and my best friend, “I want to make a T-shirt that says: ‘I’M STILL GRIEVING: WHY HAVE YOU STOPPED TALKING TO ME ABOUT IT?’”. Without hesitation, Sam said, “Let’s do that, let’s make that happen, let’s make that for you”. And so our project This Grief Thing was born.

This Grief Thing Preston 2018 by Garry Cook

This Grief Thing Manchester 2019 by Richard Tymon

This Grief Thing Manchester 2019 by Richard Tymon

This Grief Thing Manchester 2019 by Richard Tymon

This Grief Thing Manchester 2019 by Richard Tymon

This Grief Thing Manchester 2019 by Richard Tymon

This Grief Thing Manchester 2019 by Richard Tymon

This Grief Thing Manchester 2019 by Richard Tymon

This Grief Thing London 2021 photo by Method Films

This Grief Thing London 2020 by Paul Akinrinlola

This Grief Thing London 2021 by Method Films

This Grief Thing London 2021 by Method Films

This Grief Thing London 2021 by Method Films

We began as we always do when we’re making a new project: by talking with other people about the thing we are working on. Over several months, we travelled the country, meeting small groups of people to talk about grief. We gathered stories, advice, words and phrases that we heard repeatedly. Words that attempted to describe grief; words that might be useful for someone who’s grieving: Grief is like the weather. Grief = Love. Don’t panic if I cry. Let me be sad. There will be joy again. 

Again and again, we heard about invisible grief, unacknowledged grief, grief that had to be hidden, silenced, ignored. We talked about mourning clothes, about wearing black, or arm bands, about the different rituals in different cultures and religions and countries, all the different ways that grief could be worn on the surface of the body: “I’m still grieving: talk to me about it.”

Sam and I worked with a graphic designer, Fraser Muggeridge studio, and made a collection of clothing – T-shirts, jumpers, scarves – as well as things like cards and brooches and badges. Every item showed one of the phrases that we’d gathered through those conversations about grief: Let me be sad; Grief = Love; Don’t panic if I cry

Once we’d made this collection, we travelled around England, opening pop-up shops. The shops became places for people to gather to talk about grief. We sold the items on a pay-what-you-want basis (someone might pay 50p for a jumper, someone else £50). Hundreds and hundreds of people came to talk, to listen, and to learn about grief. When the shops were closed, we held more conversations, which we called Grief Gatherings. These became a vital, central part of the project, and when the pandemic arrived in 2020, and meeting in person was no longer possible, we moved the Grief Gatherings online. Suddenly we found ourselves in conversations with people all over the world: people in the UK talking with people in Canada and Australia, France and Belgium and the USA.  As the project grew, we invited other people to host conversations for us. Brilliant guest hosts engaged people from their own communities. Deaf actress and producer, Deepa Shastri, held Grief Gatherings in BSL; queer activist Dan de la Motte held gatherings for LGBTQ people; multidisciplinary artist Lou Robbin held them for people from the Global Majority.

This Grief Thing has tried to make grief more visible. It’s an attempt to normalise grief, to insist that it’s a normal, healthy emotion that shouldn’t be hidden or suppressed; that grief isn’t something to be ashamed of.

David Harradine

In 2021, we put together a whole programme of events in London: we opened market stalls instead of shops; we ran a billboard and poster campaign, trying to make grief visible in public spaces; we did many more Grief Gatherings; we commissioned artists Akshay Sharma and Rayvenn d’Clark to make work on the theme of grief. We also curated a series of online conversations on grief, which brought together various ‘grief experts’ to talk about grief from their own perspectives. An artist with a philosopher; a death doula with an academic; a photographer with a bereavement counsellor; a theatre-maker with a fashion historian. If you’re interested, you can find recordings of these conversations on our website.

In all these different ways, This Grief Thing has tried to make grief more visible. It’s an attempt to normalise grief, to insist that it’s a normal, healthy emotion that shouldn’t be hidden or suppressed; that grief isn’t something to be ashamed of. Through all the many conversations we’ve had with people about grief, in the shops, in Grief Gatherings, on the street and online, we’ve learned so much, and the project carries this learning from place to place. This Grief Thing is a resource, a community, a declaration, and an attempt to bring grief into the light. Thanks for reading this blog: your engagement is another small step towards acceptance of grief; another small act of radical compassion; another gesture of solidarity in the face of unbearable loss.

As I write, we’re taking a pause from This Grief Thing while we work on new projects. We’ll be doing more Grief Gatherings and another online programme in summer 2023, and all the items from the collection are available from our online shop. If you want to keep in touch, sign up to our mailing list and you’ll be the first to know when the project is running. We’d love to see you at one of our events; we all need to talk about grief.

David Harradine is an artist, and co-founder of Fevered Sleep, making performances, installations, films, books and digital art. He’s Professor of Interdisciplinary Practice at The Royal Central School of Speech and Drama, University of London and is a trustee of Yorkshire Dance. Born into a rural, working class community in West Yorkshire, he now lives in York and London.

There’s much more to death than we think; what if it isn’t just an ending, but an event we can plan for? Thinking beyond the four walls of hospices and hospitals, we have the chance to approach it with confidence and plan a good death. After Wards is a collection of insights and ideas from people who can help us all to re-imagine this essential part of life, and to live well until we die.

Continue the conversation at our Time to Talk events with film screenings, poetry readings, Death Cafes and much more.