The last day of Organ Donation Week 2024.
We hope you’ve found something that caught attention in this week’s variety of campaigning and publicity. If these blogs have been part of it for you then…thank you.
We know blogs like these are only a foot in the door, starters for the much bigger meal that could be made of organ donation and its breadth of related stories. If you are willing to walk in through the door a little further, then here’s a way… It’s a book and, for a few more weeks only, an abridged version read by its author is available on BBC iPlayer. It was the Book of the Week earlier this month.
The Story of a Heart, by Dr Rachel Clarke, was published on 3rd September 2024. The writer opens her prologue simply, “This is the tale of a boy, a girl, and the heart they share.” ‘Simply’ could hardly be a more inappropriate word for what follows, and her second sentance foreshadows all, “It is a story that no one was meant to tell.” Not secret, but not what we want our lives to include.
The book, using four years of sensitive interviews and research, and the writer’s own extensive bank of experience as a palliative care doctor, health service campaigner and accomplished writer, opens a window onto the vast world of organ donation and transplantation through the stories of Keira Ball and Max Johnson. With detailed back stories of medical research, technology and systems development that make transplants possible, the writer never strays far from those profoundly human stories she announces in her first sentence.
This is not, nor did it intend to be, a definitive book on organ donation, nor even on one story. There is always more that could be said, or will remain unsaid, intimate, even some (probably very little) already forgotten, overtaken by immediate demands. But in the breadth and depth of its content and the compassionate insight and vulnerable, honest humanity of those Rachel has spoken with as she threaded the pearls of this story together, it is as revealing and inspiring a doorway to the subject as could fit between the covers of an accessibly sized book, and grace anyone’s reading list.
This is not a book review. This reader hasn’t yet reached the last page. Good books are in dialogue with their readers, some will pull them quickly to the last page, racing to find out what happens. This time, we already know the conclusions. It’s the details of the journey that captivate and enthrall. The skill of the writer’s craft may give reason to pause and look twice at the scenery or, as in this reader’s case, it may trigger images, revisiting other experiences, giving reason to do more than pause, and catch breath.
For some, it will provide a skilful invitation to imagine a situation they’ve never been in, and hope never to experience, a journey of empathy resourced with accuracy and compassion.
Others may be plunged back into their own experiences of hospital corridors, and small, busy rooms of machines and bleeps, their whole being aching to do more than seems humanly possible for the one they love, now in a hospital gown, sedated, attached by wires and tubes to the mechanics of life-giving care.
These pages could take both type of reader into hard places. A word used, overused, even dreaded, is still one of the first words we reach for to describe the journey – rollercoaster. But a rollercoaster as far removed from the fairground fun as it could be. No one needs this kind of adrenilin rush.
Never flinching from detail, there is some respite when Rachel turns her forensic lens onto the background of research, innovation and courageous practice driven usually, not by detached, scientific curiosity but by deep desire to address immediate human need, often arising from direct exposure to personal catastrophe.
This respite scarcely allows time to draw breath before it will, in turn, return us to one of the two Pediatric Intensive Care Units and the extraordinarily focused details of the skill and resources, of love, applied to these two precious children and their families, linked by the story of a single heart.
Organ Donation Week closes tonight. We know its importance continues, on one side for the thousands on the waiting list and, on the other, for those who will be plunged into sudden trauma, and a choice to consent, or not, to donation.
If you do find opportunity to listen to, or read, The Story of a Heart, you will have still more reason to have those conversations about organ donation…
Thank you for reading this far. Now, back to the next pages of Rachel’s book…
