Good Grief

I’ve started, stopped, and started again on this blog post multiple times. I have other posts half written and saved in my drafts folder, and still none of them feel right to press publish on and send into the world.

This past week I had my 5 year transplant clinic visit, and I’m thinking about grief.

5 years is a momentous moment for most transplant recipients, if we make it that far. Statistics are determined by how well you’re doing at 1 year, and again at 5 years. Passing the 5 year moment feels like the celebration moment, for those of us who are doing well.

I walked into clinic anxious, not because I thought there was anything wrong with me or because my labs and scans had revealed anything particularly concerning (and not because we rolled in to town 5 minutes prior to my appointment start time thanks to a flat tire that delayed our travel time by many hours) but because in the last few months I’ve watched so many friends find out their health is failing. I’ve watched them die.

And being told by all of the doctors who look after my care that I was doing well, not just for a transplant recipient but for a human, and that I’m a sparkling definition of success and what it means to thrive post transplant, it came with a degree of guilt and grief.

Everybody talks about the grief when you’re in the thick of it. When you watch life pass you by from a hospital room, when it feels like your body is fighting against you when symptoms emerge. But this, the after, the sparkling success story, no one talks about the grief in that.

No one talks about what it feels like to be doing so well, and to watch your friends die. No one talks about the fact that you look fine, and still have to decline social events because of the germ risk and the dietary restrictions. No one talks about the constant chatter on the news of a planet on fire but the thing they’re debating isn’t an abstract idea, it’s your life. No one talks about the ways you’re supposed to be the inspiration, but all you want is to be human.

This isn’t a “poor me” post for surviving, because I do feel incredibly grateful. But I was talking to a friend this morning, farther out on his transplant journey than I am, and we shared openly for a moment about how much this part can suck too, and for a brief sliver of time it felt like relief. It felt like taking the top off a bottle where we didn’t have to be ok, or be poster children for our conditions.

I wish we allowed more long term grief. I hate the idea that we have to wrap up stories in a neat little package and the assumption of fineness that covers it all.

It’s ok to be grieving, and I’m learning that grief can be the most sacred thing of all, if we let it.