“Let’s help the living.” An interview with Eleanor Vincent

Eleanor Vincent is the author of ”Swimming with Maya: A Mother’s Story,” a finalist for the Independent Publisher of the Year Award in 2004. She has won numerous awards for her work, including a Woman of Promise Award from the Feminist Writer’s Guild.

Vincent’s essay, “The Resurrection of Wonder Woman,” explores the life and death of her daughter Maya, who was left brain dead at age 19 after a horseback riding accident. When Vincent decides to donate Maya’s organs, she struggles with the definition of death and the legacy of her daughter in the organ recipients’ lives. Interview conducted by Robyn Jodlowski.

***

What advice would you give to other families in the position of making a decision about organ donation for a loved one?

I guess my advice to anybody is to have this discussion ahead of time. In my case, I never dreamed that my daughter, at her age, would die before me. I actually did have a conversation with my daughter when I signed my own donor card, about a year before her accident. I wanted her to know that I was doing it partly because my mom died of end stage kidney disease as a result of diabetes. A transplant could have saved her life, and my daughter expressed her support and didn’t say anything like “Oh, gross, Mom” or “Don’t do that,” so I partly based my decision on that conversation with Maya.

It’s so difficult to offer anyone advice because in a situation like Maya’s you are in an extreme state of shock. Everyone responds differently. That’s why I advise trying to think about these things before something happens, because a decision like organ donation depends so much upon your values.

You need to think through: what if you had a loved one whose heart or liver was failing? That’s what I was thinking about: I don’t want any other family to experience what our family is experiencing, and if I could do anything to alleviate pain or save a life I want to do that thing. I can’t bring my daughter back, so how am I going to make something good come out of something so horrible and help relieve someone else’s suffering?

I’m probably starting to sound very Buddhist, but that’s my rule, anyway. All of us suffer, and I wanted to try and help someone else who was facing horrible grief as well as physical suffering.

It sounds like you’re still an organ donor then?

Absolutely. I’m getting on in age now; I’m 63, I’ll be 64 in about another month. I’m in good health. They’re able to use organs of people much older than they were in the past, so, absolutely.

What good does it do—and I was very clear about this at the time—what good would it do to put perfectly good organs in the ground? Maya was incredibly healthy. The only thing wrong with her was that her brain was completely smashed, but the rest of her was perfectly fine, and that’s partly what was so confusing about it. You couldn’t really see the brain injury. Her head was bandaged, and obviously she was on life support—that was pretty clear—but the rest of her body was perfectly fine. There wasn’t a scratch on her, and it just seemed to me … What a waste to bury a perfectly good heart that’s still beating, lungs that are still functioning, kidneys, liver, all of it.

Again, I guess it kind of depends on your philosophy, and I definitely had doubts and some degree of regret afterwards. But in the end I just feel like a much higher good is served by donation, even though it does raise ethical questions. It’s difficult, it’s emotionally challenging—especially for parents—but nonetheless I still come down on the side of let’s help the living. If a person is dead, the person is dead. Let’s help those people who are still suffering.

You mention in your essay that it was difficult to let Maya go since, as you say, she was not visibly all that injured and was still breathing with a ventilator. Do you think there’s any way to help a person cope with that? It seems like that would be a particularly hard death to deal with.

It is, and I don’t know. In my case it all happened so quickly, and if this were happening today—remember, this happened in 1992, twenty years ago now—it would probably be handled differently. They should have brought in the organ donation people to have a conversation with us, not have had the neurosurgeon make the request, but I think it was partly the timing. The accident was on a Thursday, her surgery was on a Thursday night, and then the surgeon was gone for the weekend. I think he knew then and was trying to tell me that there was no way she was going to survive. They gave us those four days to see for ourselves that she wouldn’t make it, essentially, and then, I think, they were concerned about the viability of the organs.

If someone from the donation group had been talking to me, a trained nurse, for instance, I might have gotten more information that would have helped me. Instead I got that information after the fact. Our donor coordinator and I spoke fairly often for two years after Maya died because I was still trying to come to terms with what had happened and I had a lot of questions. She was very generous with her time and would always speak to me. The California Transplant Donor Network is very good about family support, and in the intervening 20 years they’ve gotten even better. They really do try to support families as they make the decision and then afterwards when they’re grieving. So I guess I would say, if I had it to do over again, it would have been very helpful to have that kind of information and have hours or even a day to consider it, talk with family, to ask questions, but that was not possible in our situation. I had to decide on the spot.

That was one thing that really struck me in your essay: how ill-equipped some of the medical professionals were to handle your situation.

They were—the surgeons, in particular. As the cardiac specialist who was desperately trying to save my daughter’s life in the days after the surgery said, surgeons are technicians. They do what they do, and they leave; I’m here to try to help you if we can turn the situation around.

I think, in general, physicians are not well trained to have end-of-life conversations. Again, that’s changing, thank heavens. It’s all for the good. I think surgeons in particular are trained to step in there and be super heroes and save people’s lives and if the outcome doesn’t go in that direction, they’re kind of at a loss. At least that’s the feeling that I had about Maya’s surgeon, whom I contacted. I sent a letter to all the people in the hospital who were mentioned in my book to be sure that they were okay with it and to ask if they wanted names changed or anything and he responded and said no, he was fine with it. So apparently he didn’t see any problems.

I recorded pretty much verbatim what I recalled him saying, and that he was very uncomfortable and he was very abrupt. I think he was trying to get me to face reality, and I think he was afraid that I was still going to fight him. There was no “Do you want to unplug her?” discussion. It was, “She’s dead, I’ve signed the certificate, called in a second surgeon to sign the certificate. Now, do you want to consider organ donation?” That’s the way it was, and thank God he didn’t give me a choice about ending the life support. If I had to say, “Go ahead and unplug her,” there’s no way. I don’t think I could’ve done it.

Do you have any traditions or actions you do to honor Maya’s memory?

Typically I go to the cemetery on her birthday, Oct. 4th, and on her death anniversary, April 6th, and maybe a couple other times during the year.

The first year after her death we released balloons on her birthday and then I had a little gathering afterwards. This year I’m doing something different. I’m going to Spirit Rock (a Buddhist meditation center in Marin County) to ring their gong 108 times. One hundred and eight is apparently considered a sacred number in Buddhism. I had heard another grieving mother say that she had done this on the 30th anniversary of her daughter’s death and it was just an amazing experience and she really felt her daughter heard it. I thought, wow, that’s something I want to do. I’ll take a couple friends and go out there to ring the gong 108 times and be with Maya. Then I’ll take a hike on their acres of pristine land, which is very beautiful. So that’s for this year. And then, you know, by writing. That’s how I honor Maya. I write about her and sometimes I write to her.

Did it take a while to be able to write about her? How did you gain the emotional distance?

It definitely took a while. I was immediately writing about her but it was largely gibberish, a sort of raw, journal entry type of thing in the immediate months afterward. I was also in the middle of a creative writing program at that time. I thought I was going to be a fiction writer and I was working on a novel, which I immediately set aside. I just started writing about Maya.

Maybe six months after she died, I started researching organ donation, and I took classes on literature and medicine. From there I wrote and published an essay in the San Jose Mercury News Sunday magazine, and it turned out that the heart recipient, who was visiting friends in the San Jose area, saw that article, and he realized I was talking about him. I didn’t know who he was; I just said a 50-something-year-old Chilean businessman received my daughter’s heart. He saw that and realized who his donor was, and that’s what caused him to request a meeting with me through the California Transplant Donor Network. Just by happenstance I also asked to meet him. And that’s how our meeting came about, as a direct result of my article.

It took some time to evolve. There’s a certain point at which I really had to detach and step back. With the help of an excellent writing partner and a writing group, I was able to get the distance and do the work. But it was a very long process.

***

Robyn Jodlowski is an editorial assistant at Creative Nonfiction and a recent graduate of the University of Pittsburgh’s nonfiction MFA program. She tweets @RoJoOhNo.

Tagged: brain death, communicating with patients, family, healthcare, organ donation, organ transplantation, personal stories of death and dying

Posted in: author interview, book news, end of life stories, patients