General
Transplant 'Ghosts', Donor Identities, & Beyond
Hello all! I am a Folklore PhD student as well as 32 Years Post- Heart Transplant (1992, Loma Linda). I am currently writing some papers centered around ways in which the transplant experience shifts vernacular religious belief/practice, the perpetual grief of transplant experience, and the "gendering" of donor identities (especially for those with anonymous cadaverous donors) along the framework of queer temporalities (transplant temporality) and hauntology.
It's much too late for now to include any input into the papers I must currently finish, but still wanted to extend the topic to further discussion.
What I am Most interested in further would be the experience of and/or belief in "transplant ghosts". As in, who here has felt the presence of or experienced direct contact with / visitation from their donor in any capacity (not limited to traditionally western "ghost" narratives).
That's all for now!
I've only ever been "Post-transplant" for my entire conscious existence, so I am interested in any further conversations on the topics of the lifelong internalized grievance of being a recipient and/or any of the more existential conversations of transplant existence rather than the purely medical/material conditions of our bodies.
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Transplant Patient
I've learned so much about this topic from you, and love that we're continuing the conversation.
For my own abstract paper that I just submitted, I was reading about the intersection between grief, medical trauma and the nervous system specifically as they meet transplant/chronic illness, and that the people who actually go through the grieving process as it relates to their donor and the loss of their native organ (even if their organ came from a living donor) tended to score better in emotional/mental health longterm. This reconciling process had to happen not only on a mental, cognitive level but also an embodied, nervous system level. And with the nervous system, the way we all tend to repeat these trauma loops unless we find some way of reestablishing safety and making meaning. Not all of us will do this in the same way, of course, but as I hear transplant stories, and live out my own, I always come back to the idea that everything is so interconnected and there's still so much we don't understand.
I also just tend to love any existential/philosophical conversations so I'm excited to see what people have to share
I'm curious about this. I was able to donate a kidney directly to my wife two years ago. It was an easy decision and I moved on quickly as my surgery was minor. However, it was obviously an extremely significant event for her and us as a couple. She sees her 'ghost' everyday and there are subtle effects of that I think that are complex and hard to define. She seems to feel some guilt, and she doesn't like it when I minimize my part in it.
Transplant Patient
my first liver came from my brother and I still feel guilt when it comes to that part of my transplant story, despite it being 4 years ago. My brain gets stuck in the loop of this wasn't supposed to happen. I do know other couples where one spouse has donated to the other, and I know they don't talk about it (the fact that the spouse donated, not the fact the other spouse had a transplant) intentionally because of all the emotions involved. I think even with my own husband, who wasn't my donor, our relationship was challenged immensely by my transplant, and because he was so involved with my recovery there was a long time where I saw that painful reminder every time I looked at him, and our relationship was really strained. I think someone should make a guidebook on how to handle relationships post transplant because you're right, everything is different. I always say everything about who I am as a person changed, I'm not the person my husband married anymore, and that's really hard. But they don't tell you any of that prior to the surgery 😅
Hello there Peeps!
Wow! this conversation got me real emotional! It was as if a switch was flipped. I'm going to have to sit with it and ponder why. Such an interesting and thought provoking topic. I think it helpful to explore more.
Thirty-two years @Laszlomark That's amazing and aspiring. I am only 21 months post heart transplant. This gives me hope that my shelf life beyond 10 years is possible. I might even make it to my grandkids graduations!
Yes, absolutely!! I look forward to your thoughts after you've had some time with it!
As in seeing her own ghost of the kidney?