Jessie Williams

Palliative Care Australia’s National Champions are a group of eminent Australians who represent a range of backgrounds, skills, and experiences in their professional and private lives.

National Champions work with our Board of Directors and Chief Executive Officer to build strategic alliances that serve the business objectives, values, and mission of PCA.

Let’s meet one of our Champions Jessie Williams. Through the flagship ‘Dying to Know Day’ campaign run by Proveda, Jessie works nationally supporting individuals, organisations and communities improve end of life experiences, inspired by her own experience of grief.

Jessie, your passion and interest in death and dying – and doing it well or better started 22 years ago, take us back there.

There is a childhood and adult story that only now makes sense for why I’m comfortable talking about death.

So, growing up in New Zealand I had a Fijian uncle, who exposed my family to the death practices of his culture. When my Pakeha grandmother died, we had her body at home, and the men slept in the room with her body.

This was my first dead body and I just remember feeling so relieved that the adults knew what to do, they all had a job! So as a child, that stuff kind of goes into you your blueprint of who you are in the world and how you see the world.

Then, when I was 30, I became pregnant, and I had a very normal pregnancy and was very much a heart on my sleeve kind of person. I really loved the pregnancy. And I was so excited.

I laboured at home for most of the labour and went into the hospital to birth.

He was a beautiful 10-pound baby boy, his name’s Monty. It was only a matter of minutes before he was given to me, and the obstetrician said, “we’re very sorry that your baby has died.”

I really had no idea at that time that he had died. I thought it was just a difficult labour.

They tried to revive him; they did what was reasonable.

So, I think what happened for me in that moment was I had this psyche split, because I had life and death all at once, like “yeah, wow, I birthed a baby!”  Then – stop the clocks.

So, then you just kind of move through that horror, grief, that shock, and I made sounds that animal mothers make when they lose their child.

We had two nights in the hospital, and then a social worker came, and we were in that time where we had to leave the hospital at some point, but we didn’t want to because we just had this cocoon of love and sorrow. But the social worker came and said, “you know, you can take your boy home with you, you can still be in your community, you can still introduce people to your boy.”

So, then it became like a project, we had something to do and focus on. Like with my grandmother – we had a job to do.

And so we took him home, and we had a vigil that lasted for three nights, and that’s when my journey to Compassionate Communities started, it was noticing people coming into my space, and I knew how to create a welcoming space for them. There was nothing shocking about it. I mean, it was hard. But it was, like transformative for everybody.

And so, after that, three days of extraordinary life, the hard work of grieving started and that’s when I discovered the poor grief literacy there is in our society. I wanted to just cry on public transport, but I couldn’t because people are so weird when they see someone cry. I wanted to go up to the shopkeeper and just be myself and I couldn’t, I eventually just sort of stayed home and that’s not good to be alone on your own when you’re grieving – at all.

You talk about crying on public transport and people not knowing what to do? Did that happen to you?

Yeah, it happened to me. I mean, crazy things happened to me. I would go to this park and all the mums would be gathering with their babies and their prams and you know, of course, it’s so painful for freshly grieving parents to see others with their future story full of promise. There was this one time where I went up to them, and I just sort of pushed into the conversation. And I did that because I wanted them to recognise me as a mother. And so, I told them my story. And it was such an awkward, shocking thing for them.

They weren’t uncaring, they honestly just didn’t know what to do with me.

So, this happened in your early thirties – 22 years ago. Looking at what you’ve done since, this time in your life has really shaped your whole life, shaped your career. What were your career plans before Monty?

I was an educator, working in the community services sector with frontline staff and management and boards, who worked across disability, mental health, drug and alcohol, gambling, addiction, any form of human vulnerability.

I understood the world was full of vulnerable people and it was a privilege to contribute to a more just society.

And so learning about psychology, human relationships, sociology and systems, all these things helped me when I was grieving for sure, and my workplace was very supportive. That’s where I’d started to learn about and drive, compassionate workplace programs.

I guess, the death of Monty woke me up to the fact that I’ve only got one life to live, and I really want to make the most of it – life is finite. That’s the gift of realising that; way more than having a relationship with nature, we are nature.

I moved from the community services sector to my second career, as Head of Learning at the School for Social Entrepreneurs. These change makers were my kind of people –  passionate, driven, playful and generous – and I joined the social movement to build Compassionate Communities.

What were the key lessons out of your experience that you really want people to get a sense of and learn from?

Firstly, being in the dark, grieving person’s orbit and being close to them – it’s scary at first, but there’s a relief that comes from being in it, there’s more relief from being in it than being outside of it.

So, when people think I’m going to avoid going to that person’s home, because they’re dying, or avoiding a funeral – they’re really missing out because you’ve just got to get over that threshold, and then you’re like, “Oh, my God, this is the most loving, accepting space I could ever be in.” So that’s what I want people to know first off.

And what I want people who are actually grieving or even who are dying to know, is just let your guard down, because from my experience, having  a broken heart eventually makes for a bigger heart.

If you’ve got a broken heart, you’ve got to acknowledge that, you don’t have any control over that, but if you allow those feelings to come, then you increase your ability to be okay, and allowing people to witness that and be there for you is part of that.

I knew I needed people, and I also wanted them to know my pain. I wanted them to know my love.

There’s something about being in the death space that makes your life better, and it’s different for everybody, but there is something about recognising your own mortality that I think is really helpful and healthy for living a good life.

Where are we at on that learning trajectory? Thinking about those mums in the park, do you think you’d get a better reception from those mums now? Are we getting better at this stuff?

That’s a very hard question to answer. I’m not a sociologist or a social researcher but if you look at the universal experiences of loss we’ve had with COVID, where we’ve talked about the number of deaths every night on the news, and we’ve had a bushfire that killed thousands, if not millions of animals and creatures, we’ve got a war in Gaza – I think those universal experiences that we’re all exposed to does bring death to the fore.

I’d like to think we are better now – or getting better.

So, Jesse Williams, why do you want to be a PCA National Champion?

Across the decade of being involved in death literacy education at Groundswell, palliative care of course was a big part of that awareness raising. We would stress that “the earlier, you get it, the better quality of life you have.”

Talking about death, dying and grief was not always the sexiest topic for companies looking for guest speakers! So, a lot of rejection forced me to play with language A LOT – one phrase that tended to work better than others, was “we want to live well, up until our last breath.” That phrase has been the one that has made sense for people.

I share the desire as with so many palliative care workers, for an informed and empowered community to face the end of life together and even though palliative care was not part of my story, I’ve always felt very grateful that we have a palliative care sector. I know that palliative care staff are some of the coolest people I’ve ever met.

Dying is messy and grief is messy, and it brings out the best and the worst in humanity, and I know we have to come together in our efforts to reach more people with our message to get death literate and ‘Get Dead Set’ and to be a part of the Compassionate Communities movement. I’m passionate about increasing investment into the broader end of life and grief space in Australia.  I was honoured to be asked to be a Champion.

Just finally, how do you remember Monty these days?

Monty’s anniversary is on the 16th of April, and we watch the sunrise every year.

I’ve never missed a sunrise and we’ve been in different countries on that date, last year we were in Japan and went out to an island for our annual pilgrimage.

It’s the promise of a new day and that sense of hope.

I’m also part of a 400 strong community of families who come together for the Service of Remembrance, Consolation and Hope in Sydney each year and for those precious two hours, we are all parents, grandparents, siblings of our children again. We witness each other for who we are, without apology, without fear, but with love.

Relationships are central to the work and success of PCA, reach out if you’d like to speak with Jessie – pca@palliativecare.org.au

Let’s see how we can work together to increase access to palliative care and support people and families at the end of life.