A story for Neve
My dear Neve,
The other day, while sitting in a webinar about Compassionate Leadership, 480 days after your death, I had a lightbulb moment. Suddenly, I understood; what you had needed was a story. I don’t mean the stories that you were telling yourself, like we all do. No, I mean stories from outside of your own head, stories to give you strength and wisdom, to inspire and comfort you.
Stories are part of what makes us human, and you are intensely human. The world over, we tell stories: about birth, growing up, facing challenges, living, and dying. How else can we catch glimpses of our possible futures, if we don’t have these roadmaps?
Despite the abundance of stories, it is the absence of the ones you needed the most that stands out. Where were the after death stories? I don’t mean stories for the rest of us, your sisters and family. To some extent, there are narratives for us, for the bereaved, for how we can keep getting up each day. Rather, what I mean is a story for the person who is dying, for you, Neve. Even better would have been a range of stories, to allow you a peek into what might lie ahead.
I wonder whether you might have found some comfort in hearing stories about other children, after their deaths? To be clear, many faiths do this already and do it well. But what about when those stories don’t resonate or aren’t enough? Neve, you were so desperate for clarity, your brain struggled with anything abstract. If only I could have given you a range of stories, might this have allowed you to imagine your own?
I am sorry I couldn’t provide you with the stories that might have eased a tiny bit of your pain and grief. I could never have given you a story that didn’t involve you dying. However, I will always wonder if, like so much of the world, you too could have benefited from hearing the stories of others. The living stories and the dying stories and the after death stories. It never occurred to me that perhaps, together, we could have crafted your story, had we understood that even in death, your story would continue.
And so, Neve, this is your story, the one you won’t ever know.
You were so devastated to be dying. It was a lonely, sad, and deeply distressing place to be - not only were you dying, you were dying alone. The rest of our family would be with you for as long as we could, but ultimately, it was only you dying. Understandably, this felt utterly devastating and unfair to you. Why only me?, you wanted to know. So often, I had heard people say that their child’s worries were focused on their family and on whether they would be okay after the child died. This was not you, Neve. No, you were worried about missing out, about our family continuing on without you. I loved this about you; you were candid and spoke your mind. Since your death, I have been gifted a multitude of tales that highlight this.
Because we never wanted to make your pain and your sorrow worse, we avoided talking much about later, about after your death. The reality was that you would no longer be with us; I had nothing else to offer you.
I realise now, Neve, that you needed to catch a glimpse of your future story, to understand what was to come. Not for us but for you. I think back to when you begged us to take you to the cemetery, to see where you would be buried. Initially, I felt shocked at your request - how could we do this? But, Neve, you were you and you insisted. You didn’t have any of the societal taboos holding you back. You knew you were dying and, ever practical, you wanted to see where you would be.
And so, one afternoon, we took you. We drove you to the cemetery and showed you where you would be buried. Along the edge, as you didn’t like to be surrounded by too many people. It felt right that you would have a hedge alongside you. This visit enabled you to see the cherry tree under which you are now buried. Your main concern was the tree roots; how would they be able to dig a grave, you wondered. We assured you that the cemetery would sort this out; this was not for us to worry about.
This wasn’t an easy afternoon; you were sad and so were we. But ultimately, it was the right thing to have done. You seemed more settled once you knew where you would be buried. This isn’t to say that you didn’t continue to have instructions about your grave. Often at the dinner table you would share guidance for us. These conversations were painful for all of us, but it was clear how important they were for you. You needed to share and you needed us to hear, even when it felt uncomfortable.
But there wasn’t much more than this. Because we had no stories to tell you. I searched and searched for books to share with you, but almost all the stories about children dying were aimed at your siblings and your friends. Where were the stories for you, the dying child? I came across one or two, but they didn’t resonate or they had scary scenes, things I knew would worry you. A couple of stories about animals dying, but this wasn’t clear enough for you. How could you see yourself in a bird or a bear? How could the idea of a dragonfly looking down into where its loved ones still live but never able to return to its life be a comfort?
By this point, you were already terrified of dying in your sleep. In my attempts to reassure you that dying itself is generally peaceful, I had muddled the story by saying that people are usually asleep when they die. Unsurprisingly, from then on, you feared sleep. This was not the story I meant to tell you. How I wish I could have given you a narrative that would have comforted you. A story about dying and about after death, to hold and in which to be held.
Recently, I heard a story about a boy called Mason. Like you, Mason had cancer. One day, Mason’s hero, Chadwick Boseman, died. Mason was fascinated to learn that Chadwick had died at home; he didn’t know this was even possible or allowed. Not long after, it became clear that Mason was also dying. He knew immediately that he too wanted to die at home, like his hero. “I wanna die like Chadwick Boseman. I wanna do it like Chadwick did.” It was only because of hearing another death story, that of his hero, that Mason was able to have a blueprint for how he too wished to die. These ideas, alongside the clear communication from his parents and his doctors meant that Mason was able to be part of crafting his own death story. The story of Chadwick dying at home wasn’t a story about averting death. Instead, it was a realistic and aspirational story and it gave Mason and his family the solace that they so desperately needed. In his mother J.J. Duncan’s words, “he had a beautiful death, thanks to Chadwick Boseman”. These stories really matter.
So Neve, dear Neve, I wish you could have known the next bit to your story, after you took your final breath. If only I could have told you about the love that filled your room, and our house, after your death, in those first 40 hours. About the gentle hands and compassionate women who prepared you for burial. About the hundreds of people who came from far and wide for your funeral. About the stories shared, the reminiscences, the laughter, the connections. You brought individuals together. People still talk about that time, after your death, with you as the heart of our community.
How I wish I could have told you that I would learn to paint people, in watercolours, so that I could paint you. I think you would like the idea of me scrolling through photographs, looking for the one that calls out to me that day. Or me deliberating over paint colours, weighing up the stark beauty of a monochrome painting in grey ocher or caput mortuum versus the enchantment of a limited palette of carefully chosen colours. Surely you would have had opinions about my choices. Why did you choose that paper? Not that brush, Mummy, use this one instead. I would love to tell you that your beautifully bewitching face lives on, in all its guises.
You worried about being forgotten; I wonder if you would struggle to imagine the reality. It is not just your friends, family and community who remember you; in fact brand new people are discovering you. Your story is continuing, through the ongoing ripples of your life. Hundreds of people read about you now, on my substack. It won’t be long before that becomes thousands of people. You were in the Telegraph Magazine and on BBC Radio 4 the World at One. You have not been forgotten. Far from it. Your name and your story continue to spread and even more importantly, to have an impact.
I often want to tell the world that our decisions were guided by you. Each choice we made was in the context of what was the right choice for you. Your standards were high; you always wanted to know why. Settling with because was not how you lived your life. I recall frank conversations; me worrying that you might choke on the whole almonds that you loved. You pointing out that you were going to die soon anyway, so why couldn't you have the almonds. You helped us to focus on what mattered and what brought meaning to life. Whole almonds were very carefully negotiated; more trauma was not what you needed. Yet eating well while you could was absolutely what you needed. You wanted more time but you also wanted to live well.
Your legacy continues to grow. Soon I will share you and your story with hundreds of brand new medical students and children’s nursing students. I am already sharing and will continue to share your story with healthcare professionals, both in palliative care and more widely. People tell me regularly that they care for patients differently, because of what they learnt from and about you. Others tell me that they now understand that dying children can also remain curious and bright children who yearn to learn and discover.
I am surrounded by people who want to make a difference in your name or because of the time they spent with you. Their scopes are broad and fascinating.
Some want to make it easier on children and families and on schools, when somebody is seriously unwell like you were. They have ideas about how to do this so as to ensure your impact is felt deeply and by as many people as possible.
Others want to focus on the wellbeing of the nurses and people who care for children like you. Unsurprisingly, many of these nurses and carers were smitten with you and their sorrow and tears were real when you died. Sadly, not everybody understands that connections happen when humans care for one another, even in a professional capacity. There is much to be done in this area and there are people working on this.
Another ripple of your life is that the brilliant Kathryn Mannix is sharing the power of telling the truth with kindness, by speaking about you and your beloved new-to-you big red bike, in her Red Bike Moments story. We didn’t know it then, in the autumn of 2020, but your window of opportunity to ride a big bike was limited. Because of the wisdom and clarity of your brain tumour nurse, who was part of an incredible team of health care professionals, we eventually understood that, irrespective of whether your treatment was successful or not, the reality was that you were going to die in the not too distant future. She heard how important it was to you, to ride a big bike and she encouraged us to seize the moment and get you on your big red bike. Kathryn is making sure this story is heard as widely as possible, so that other health care professionals understand why it is so important to be open and honest with families. These professionals always tell her that they will now carefully look out for how they can be part of making Red Bike Moments happen. I hope that other children will get a chance to do what they love, in the time that they have, because their doctors and nurses will hear about you and your bike and how telling the truth with kindness really mattered.
I think you would love to know that our local community now has a bread rota, in your name. Bread is baked for families who are facing extra challenges, whatever they may be. The crusty bread that you loved continues to nourish others, in your memory. The community that held us up is even more cohesive and interconnected, because of you.
In time, I hope we can raise enough money so that your wonderful nursing team can have their very own cooling equipment. It is important that other families get the choices our family had.
It feels like both an eternity and a mere moment since I last saw you. Your final days with us were hard; pain and sorrow remain at the forefront of my mind. Yet, the moments that also stand out are when you made us laugh or shake our heads in exasperation. Even on the weekend of your death, you uttered several noteworthy Neve remarks. It is a formidable skill, the ability to make a doctor laugh when in fact we all think you are unconscious and about to die.
The challenges that you faced were real and heartbreaking. You suffered and, in general, you didn’t hide your suffering. But alongside this anguish was your impish laughter, which drew people to you. You made us all smile and sigh and tear our hair out and laugh uproariously.
Part of your after death story is therefore a reminder to live life fully, if and when we can.
To speak out openly and stand up for others.
To communicate clearly and honestly.
To understand that two seemingly opposing things can be true at once.
To laugh at every opportunity.
To eat the food we love.
To swim and cycle and climb trees if we can.
To share our sorrows with those around us; we don’t always need to be positive or hide our pain.
To surround ourselves with good people, people who help and support us and in turn, allow us to do the same for them.
To eat Freddos, play Poo bingo and learn for the sake of learning.
To assume that all Olivers can juggle and that all bananas can laugh.
Your story, Neve, is not done. My heart breaks, again and again, each time I recognise that I can’t tell you any of this. It doesn’t seem quite possible. I can’t reach back to you; all I can do is carry your story and you forwards. We visit and take care of your grave and we talk about you. In paintings and words, in stories and in impact, your name and your spirit live on, making a difference.
I know that even stories would not have removed your grief and heartbreak, because the reality was that you were dying. But I will always wonder whether hearing after death stories, including your own, might have eased some of your loneliness and sorrow.
I have started a record of the impact of Neve’s life and the difference she is making, for children, families, health professionals and the wider world. Please help me continue Neve’s story, by sharing any ripples that you have seen or felt and their impacts. If hearing Neve’s story has changed you or your practice or alternatively, if you have felt supported to do even more of what you are already doing, please tell me. The effect may be small or large, felt by one person or many; I am interested in all of it. You can share your Neve’s ripples here www.emilytammam.co.uk/nevesripples. Thank you.
It is very important for me too, with a child under palliative care. We have been camping this weekend. Because if not this weekend then when?
You are just like my daughter Mia and love your story