On New Year’s Day 1998 – the day after my 21st birthday – when I go on the list for a double lung transplant, I’m conscious of three certainties. The first is that without a transplant, I will die, and I will die soon. More than once, I’d felt the breath of my friends’ departures, the camber of their spirit winding down and the sad predictability of history repeating. Ever since I can remember, I’ve known that this is how my life would be – sitting with the dying, seeing out the living, watching over the dead.
The second certainty is that organ donation is the ultimate act of love. It’s peak altruism, kindness on the grandest scale; it’s all that is good about humanity.
The third thing I know is that I will be atoning for the rest of my life. This uncomfortable truth might not be what people want to hear.
People often think that once you’ve had a transplant, you’re cured: this is not the case for people like me who have cystic fibrosis. For me, transplant is an ever-changing landscape: the threat of infection, rejection and cancer simmers in the background – a less-than-holy trinity I’ve experienced and might experience again. It’s also often assumed that life after transplant goes on “as normal”, but despite it making no logical sense, at some cellular level, I’ll always feel a disproportionate degree of culpability for my donor’s death; a crushing sense of guilt for simply being alive. I even repent as I commit these words to the page, and nothing will ever assuage what I can only describe as my “dark passenger”.
With days to live, I get the call, and for reasons I can’t divulge, following my transplant, some rudimentary details are shared with me about my donor. This is rare in Australia, where it’s nationally mandated that the process of donation remain anonymous. But recipients are encouraged to write letters of thanks, and while I know my letter will be censored of all identifying information, one does hear stories of donor families and recipients writing in code so that they can unravel each other’s identities. Some even meet, become close friends, have barbecues and go to the beach together.
In my first letter, I thank my donor family and acknowledge that thanking them will never be enough. I tell them a little about how I couldn’t walk or shower myself before my transplant, and of my plans for the future; that they have given my family and me a reason to hope. But committing this to paper seems at odds with the sorrow I feel at the loss of their daughter, which I know was sudden and brutal. It almost seems like an exercise in cruelty.
Here I am. I am alive – your daughter is not.
A few years after my transplant, I’m told that my donor family has moved, with no forwarding address. Someone says it’s their way of moving on, but I disagree. One does not move on from loss. You learn to live as best you can around the shapelessness of your grief, but you don’t move on. I didn’t. I’m certain they would not have.
There is a well-worn quote about organ donation: “Without the organ donor, there is no story, no hope, no transplant. But when there is ... life springs from death, sorrow turns to hope, and a terrible loss becomes a gift.”
Novelist Kate Kruimink learned this first-hand after her family chose to donate her mother’s organs. That her mother had made her wishes so explicitly clear meant the decision was a simple one.
“Aside from the obvious life-saving act of donation itself, I see talking about your wishes as a service to your loved ones,” Kruimink says. “It gives them that certainty and that hope and meaning. I feel real love when I think of the recipients of her donations out there, still with us, and that’s enough. I love to hear from them if they’re able, but they don’t have to be grateful, other than just getting on with their lives.”
As a recipient, knowing my donor wanted to donate her organs might have helped me to accept such a profound gift with less guilt.
But regardless, because of selfless decisions made in their most wretched moments, donors and their families give perfect strangers – who they will most probably never meet – the gift of life. Through me, my donor lives on. Through the people she loved and the people who still love her, she lives on.
I can only hope that I have made her proud. After nearly 24 years, through a practice of radical self-acceptance, I have finally come to realise that by living – and striving to live well – I too am participating in the ultimate act of love.
• Carly-Jay Metcalfe is a Queensland-based writer. She’s a passionate advocate for organ donation and has recently finished her memoir, Breath
