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.
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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.
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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.
Sandell Morse
May 2, 2012
I have not had the guts to become an organ donor, and I so much appreciate the honesty of both your essay and this interview. One of the most important things– to me– is to “hear” you say the word regret. Often we don’t think we can work through a feeling like regret in such a situation, but your courage tells me we can. I love the way you’re continuing to honor your daughter
Sandell Morse
sandellmorse.blogspot.com
Eleanor Vincent
May 3, 2012
Sandell,
Thank you. At some point in this journey, I realized that regret and remorse are an inevitable part of grieving. When we love deeply, grief brings a full spectrum of emotions. Donating Maya’s organs and tissues both helped my grief and made the process more complicated. There was a lot to process! I’m very gratified if my experience can help others get more clarity.
Eleanor
Linda Peterson
May 3, 2012
Eleanor — What a wonderful gift you’ve given, yet again, to Maya, to all of us, and to the world. Just FYI, I’ve got the little sticker on my driver’s license – and I made that decision more than 20 years ago. I don’t remember when or why, but it was around the time of Maya’s death, so my guess is that you inspired me all those years ago. sending you love, Linda Peterson
Eleanor Vincent
May 3, 2012
Linda – How wonderful to see you here! Of course you are an organ donor and I’m totally honored if I had anything at all to do with that. Our beloved Maya continues on in amazing ways. The daughter of Fernando Jaras, the man who received Maya’s heart, just gave birth to her first child, a girl. They named the baby Maya Nicole. I’m sure you can imagine…I’m so touched. Olivia and her husband Paul were here in California in February. We had a wonderful visit. Truly, donation is a gift that keeps on giving! Love to you,
Eleanor
Patti Frame
May 3, 2012
Eleanor-
As you know…..
My daughter was 7 when I was extremely ill with an inherited liver disease.
I was so blessed to be the recipient of Maya’s liver!!!!!!!
My daughter was married 5 months ago and I was able to attend. I would not have survived past 1992 without a new liver. I am grateful to YOU, My Dear, every day of my new life. Your decision to donate Maya’s organs was profoundly difficult I know……but I owe my life to you!
I love you!
Patti Frame
Eleanor Vincent
May 3, 2012
Patti – I am so glad for you and Erin and Dan that you received Maya’s liver. Of course, we don’t get to choose the recipients, but if I could have, I would have picked YOU. If more people would be willing to donate, then more wonderful people just like you would be saved. Now that two decades have passed, the miracles that result just seem to grow. I can’t wait for you to be a grandma and for Erin to hold a precious baby in her arms! Life is amazing. Thank you for always being there for me with your love and support. It means so much.
xo
Eleanor
Margaret Hinkson Tatusko
May 3, 2012
I was unable to donate
my daughter’s organs due to the length of time before her body was found.
Margaret Hinkson Tatusko
May 4, 2012
I was unable to donate my daughter’s remains due to the length of time before her body was found.
Eleanor Vincent
May 4, 2012
Margaret,
I am so sorry for your loss. What a tragedy. As you know, donation is really only possible in very particular circumstances, typically severe head injury or brain aneurisms. While it can be comforting to the family of the donor, it can also be upsetting for others. We all see these very sensitive issues differently. I hope you are finding comfort for yourself and ways to honor your daughter. My sister dedicated a bench to my daughter in the Holden Arboretum outside of Cleveland, and that provided great comfort to our family. There are many ways to honor and remember our loved ones. My thoughts are with you and your family.
Eleanor
Al Tochinsky
June 25, 2012
Ellie, I had no idea, I’m so sorry. I only hope that I have your stenght in that situation, I do know I would not be able to tell the story.Al
Eleanor Vincent
July 7, 2012
Al – We never know how we will respond until we are tested. I always used to say if anything ever happened to one of my kids I could not go on living. Well, it happened. Telling the story of Maya’s life and death was a huge part of my recovery, but there was much more that I did to heal. Prayer and frankly having huge arguments with God was one strategy. Therapy and grief support groups was another. Talking to friends and family. Gardening. Walking. We do whatever it takes to survive, and ultimately to thrive. It’s been 20 years now and here I am. So glad to still be on this planet! As one of my favorite bumper stickers says, “Life is not a problem to be solved, it is a mystery to be lived.” I’m just grateful to have had both of my daughters and now to be a grandmother is beyond joyful – it’s pure bliss! I treasure the mystery every day.
Thanks for writing,
Ellie