The Condition of My Transplanted Heart Is One of Remembering

The heart came from somewhere in the Midwest by plane to St. Louis Children’s Hospital during game 5 of the 2006 World Series between the St. Louis Cardinals and the Detroit Tigers. My mother heard cheers as the surgeon stepped off the elevator with the cooler containing the organ. She took a picture of the surgeon and the cooler in the same moment that Adam Wainwright threw the final pitch, a strike, to Brandon Inge and the Cardinals became champions. In the picture, the surgeon is smiling. The cooler containing the organ is navy blue; the surgeon holds it with one hand. Years after the transplant, I find the photo on my mother’s phone while trying to help her clear space for more memory. She asks me to leave it there because she sometimes likes to look at it. I zoom in on the cooler—it is the closest I’ve ever come to seeing the heart now inside my chest or a picture of the donor.

My own heart I’ve seen. After it was taken out, I asked if I could bring it home with me. It was an “unusual” request, one the hospital had never fulfilled before. My cardiologist asked if it was a Jewish thing. My parents are rabbis and they both said no, it’s not a Jewish thing to take your organs home with you. All I could say was that I wanted it, it had been mine, and I didn’t want it to be thrown away. They released it to me in an urn through a funeral parlor as my own “remains.” I suppose it does remain, in a way, as evidence of the great event. I now have two hearts in my possession: one inside, and one out, in an urn. The process of getting my heart released took a few weeks. I went to the hospital for a checkup around Thanksgiving, and my doctor presented me with a square wooden box. It was the cheapest urn, my mother said.

My family doesn’t usually do much for Thanksgiving. But the year of the transplant, our gratitude was overwhelming, so we made about seven kinds of pie and then opened the box to view the heart. Inside, there was a white, round, tall plastic container. Inside that container, my heart. We all wore plastic gloves; we put newspaper down on the table in case the liquid the heart was preserved in dripped. I removed my heart and held it in two hands because it was large, pale yellow, and deformed, but it hardly dripped. We passed it around and said thanks. Thanks to my old heart for doing all it could, thanks to the new heart for being so good, thanks to each other for coming home. I thought about the donor’s family. It overwhelmed me to think that somewhere not so far away, there was someone young like me, small like me, with O-positive blood like mine, missing from a table. My family’s gratitude, our joy, comes in large part from another family’s grief. It’s not a direct correlation, nor a direct result. I did not cause that death, but I did wait for it to come for a long time, and when it did, I was grateful. But what would that make the condition of my transplanted heart—not quite grieving, not quite gratitude? What can I call the crawl space in between?

The heart is called a “gift” from the donor to the recipient. I wonder if it’s the right word for receiving, because you aren’t just given a heart, you have to earn it. In the year I received a heart, only 2,167 heart transplants were performed off a list of over 4,000 waiting names. So there are levels of need, statuses of waiting that mark your closeness to death. Status 2 means you are in heart failure but not dying, because one can live in heart failure, just not very well. I lived in heart failure for seven years and it’s difficult for me to say that any of them were bad, because I was a happy kid even though I did not know what wellness felt like. You are unlikely to receive a heart as a Status 2. Mostly, you bank time for when you become sicker and are bumped up to Status 1B or 1A. Status 1B means you are very sick, but you can live outside the hospital. Status 1A means you are at the end; you are holding death’s hand. In theory, I suppose the levels make sense, but the complication comes because you can choose to make yourself sicker in order to bump yourself up on the list. Bumping up is common practice, a strategy, because if you wait too long, your other organs will start to fail. And if that happens, recovery after the transplant is more difficult and sometimes unsuccessful. The whole process feels like an exercise in how close you can get to death—close enough to earn a heart, not so close that the heart can’t bring you back. There are other factors that also help or hinder receiving hearts—age, blood type (O blood will wait longer than most because anyone can receive an O, but only Os can save Os). I don’t know all of them. I have always been too afraid to ask. Did it matter, for instance, that my family could afford good insurance, the surgery, and the drugs I’ll always require? I’m not sure, but given the way health care functions in this country, I am inclined to think yes.

When you list as a child, before the age of 18 as I did, you’re also required to go through a psychological evaluation. Sometimes, kids lose themselves in their transplants and donors. They miss their illness because it made them special. Sometimes, donors can become a way of avoiding the overwhelming possibilities and responsibilities that come with wellness. Kids say they are living the life their donor left behind. I’ve struggled with what my obligations are to the donor, as well. It’s a kind of self-preservation, I think, that I have not yet asked to know who the donor was. I might someday, but lately I think more about the space of grief in the transplant process. If it’s possible to inhabit grief and gratitude at the same time, to respect the heart, the gift of it, and also believe it can never be truly earned or deserved.

In the Talmud, it says that Shimon bar Yochai, the paradigm for Jewish mystical teachers and miracle workers, lived with “one eye laughing and one eye crying.” On the 10-year anniversary of the transplant, I go walking in the cemetery near my home in Iowa City. I make my way to the bodies-donated-to-science garden. There’s a podium but nowhere to sit. I stand with an open notebook, ready to speak. I go up and down, up and down, on the balls of my feet. I don’t pray often, and when pressed, I forget the words. Up down, up down. My father used to say that this is how angels daven—standing on their toes because their souls/soles are hot with holiness. But it’s October and I’m cold standing in mist so fine that I can only see it when it lands on the pages of my open notebook. I press a hand to my chest; I search through my coat, the layers of shirts, for the heartbeat. How does it begin? I can’t remember, so I walk in circles until my cheeks flush and I feel ready to take Death’s hand. I whisper that I have been well, and then all the ways I am worried my life won’t go right, all the ways I have embraced wellness: I might not be able to write a book; I might never find a partner; I might never have children; I might never get a haircut I like. Death kisses me slow, familiar, and I go quiet. I remember all the things I could not do before and, suddenly, the movement of my legs, the hunger in my stomach, the cold October morning, and my ability to stay warm are enough. We walk on and I recite the Mourner’s Kaddish for the donor and the family for whom, 10 years ago, they lost some light. I sit beside Death all morning, tracing the scar that runs up and down my chest. Ten years went so quickly, I say. I think of that picture my mother has in her phone of the cooler containing the heart. She told me she keeps it just to remember the moment. Maybe that’s what the crawl space is between grief and gratitude—remembrance or memory. Maybe that is the condition of my transplanted heart, one of remembering.