I am learning to live with the guilt of my organ donor’s death | Carly Jay Metcalfe

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On New Year’s Day 1998 – the day after I turned 21 – when I registered on the list for a double lung transplant, I had three certainties. The first is that without a transplant, I will die, and I will die soon. More than once, I had felt the breath of my friends’ departures, the dullness of their spirits calming down and the sad predictability of history repeating itself. For as long as I can remember, I’ve known my life would be like this – sitting with the dying, seeing the living, watching over the dead.

The second certainty is that organ donation is the ultimate act of love. This is the pinnacle of altruism, of kindness on a grand scale; that is all that is good in humanity.

The third thing I know is that I will atone for the rest of my life. This uncomfortable truth may not be what people want to hear.

People often think that once you have a transplant, you are 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 that I have lived and could live again. Life after the transplant is also often assumed to be “normal,” but while that doesn’t make logical sense, on some cellular level I will still feel a disproportionate degree of guilt for my donor’s death; an overwhelming sense of guilt for simply being alive. I repent even entrusting these words to the page, and nothing will ever appease what I can only describe as my “dark passenger”.

With days to live, I get the call, and for reasons I cannot disclose, following my transplant, some rudimentary details are shared with me about my donor. This is rare in Australia, where it is nationwide mandatory that the donation process remain anonymous. But recipients are encouraged to write letters of thanks, and while I know my letter will be censored of all identifying information, stories are heard of families of donors and recipients writing in code so they can sort out the identity of the other. Some even meet, become close friends, have barbecues and go to the beach together.

In my first letter, I thank my donor family and recognize that thanking them will never be enough. I talk to them a bit about the fact that I couldn’t walk or shower before my transplant, and about my plans for the future; that they gave me and my family reason to hope. But writing this on paper seems at odds with the grief I feel at the loss of their daughter, which I know was sudden and brutal. It almost sounds like an exercise in cruelty.

I am here. I’m alive – your daughter is not.

A few years after my transplant, I was told that my donor family had moved, without a forwarding address. Someone says it’s his way forward, but I disagree. We don’t walk away from loss. You learn to live best around the shapelessness of your grief, but you don’t move forward. I did not do it. I’m sure they wouldn’t.

There is a well-known quote about organ donation: “Without the organ donor, there is no history, no hope, no transplant. But when there is … life springs from death, grief turns to hope, and a terrible loss becomes a gift.

Novelist Kate Kruimink learned this firsthand after her family chose to donate her mother’s organs. The fact that her mother made her wishes clear meant the decision was simple.

“Besides the obvious saving act of the donation itself, I see speaking of your wishes as a service to your loved ones,” Kruimink says. “It gives them that certainty and that hope and that meaning. I feel true love when I think of the recipients of his gifts there, always with us, and that’s enough. I love hearing from them if they can, but they don’t have to be grateful other than just getting on with their lives.

As a recipient, knowing that my donor wanted to donate her organs might have helped me accept such a deep donation with less guilt.

But regardless, due to selfless decisions made in their most miserable times, donors and their families offer complete strangers – whom they will likely never meet – the gift of life. Through me, my donor lives. Through the people she loved and those who still love her, she lives on.

I can only hope that I made her proud. After nearly 24 years, through a practice of radical self-acceptance, I have finally realized 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 is a strong advocate for organ donation and recently completed her memoir, Breath

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