The setting: a New York City cafe. A bottle of wine. Maya Angelou died today.
One of my closest friends has agreed to let me interview her. She begins:
—I was thinking, I personally find the acute grief and shock over the death of someone who’s eighty-five or ninety, really confusing. I sometimes get the feeling that we’re in a society where people really just want to forget or be in denial that death exists.
—Is there a difference for you between the shock that’s expressed and the grief?
—That’s a really good question.…(pause)… Maybe in part it’s also my particular, I don’t want to say “abnormal”…maybe “a-typical” view.
—What makes you a-typical?
—There are a few things. One, I’m not afraid of death.
—Do you know why?
—I think it has a lot to do with the fact that I had a transplant and so that works on multiple levels. One is that my largest internal organ belongs to someone who died, so I live with death, in that sense, every day. That person had to die in order for me to be alive. And on another level it’s because I don’t have the expectation that I’ll live a long time.
—Can you tell me more about your views on death?
—It’s the one thing we have in common. It’s the one thing we can’t avoid. It’s the one thing we know is going to happen to all of us. Life, in a sense, is much more scary than death is, to me, because with death there’s no mystery other than, in most cases, when it’s going to happen. But you know it’s going to happen. It’s very matter of fact to me, which is why many reactions to death I have a hard time relating to. And even the grief, back to your question, I think maybe I don’t understand grief that much either. Part of it may have to do with being an immigrant as a child and frequently moving and always having this understanding that the people closest to me I couldn’t always have access to. I’m used to the idea that I’ll always be missing people and it’s not because of death necessarily.
—I very much relate to that.
—It’s just…I’m thinking particularly of social media and the certain floods of messages…when Nelson Mandela died, and I actually had a very strong reaction to his death because…(tears up)…there’s no one like Nelson Mandela. But that outpouring of “Oh my God! How could this be happening!” The man was ninety-five years old. He went through so much in his life, physically and emotionally, it’s a miracle that he lived to ninety-five. And if anything my reaction, my response is of gratitude that I was even alive…(tears up)….
—Can you pinpoint what that emotion is?
—It actually has more to do with Nelson Mandela and his life than anything. My feeling is that most people are just pale imitations, very, very pale imitations of what someone like him was. And that makes me sad. I think there would be much less needless death, to connect it back to death, if more people were like him. But so, I don’t mean to sound cold, but so he died. He had to die. We all die. I think that to remember his life is a cause for celebration. Thank god that he existed.
—Absolutely! …Can you talk a bit about your transplant? Can you take me through the journey of that experience both for you and your family?
—My experience, once again, is a-typical. Most people who go through a transplant are much more prepared and come to terms with the fact that they might die, in a way that I didn’t. I didn’t know I was dying because I was so sick and I got sick so quickly that I went from thinking that I had the flu to waking up out of a coma and being told, while on very harsh drugs, that this had happened to me. So I had to learn that this had happened. Many people just deteriorate if they have an organ that’s failing. They often go for years and then they go on the list and then they often go for more years and then, sometimes, they have a transplant. For me this all happened in a matter of days. For my family, in certain respects it was more traumatic, because I didn’t have to deal with all that. I just had to deal with the aftermath. The other thing that is a little bit a-typical is the age when I had my transplant. I think many people are older. I was twenty-four. Now, at forty-six, I’m at an age where I’ve almost lived longer with it than….
—What was some of the “aftermath” that you had to deal with?
—You see stories of transplants in the news or stories in fiction, but the thing that’s often left out of those stories is that once you go through that, everything about you changes. There are physical changes that you go through, there are habits that change. I have to take medication every day and there are certain things in the grand scheme of life and the world where I’m limited. I can’t travel to every country because I can’t have any vaccinations that have live viruses in them. I have to see doctors regularly. I’m a patient for life. So even things like moving, when I moved to New York, that was a big deal because it meant finding new doctors, and dealing with a new healthcare system. The medications I take are the big thing. I don’t have any heavy day-to-day side-effects, but I have to take them every day.
—What were some of the changes you experienced from the medication?
—One of the ones that is not toxic at all but it’s a huge issue, it was at first, especially for me, is one of the medications causes hair growth. When I was first on it, I remember, on my arms, having hair…I looked like a gorilla. It retreated when I started taking smaller doses. I didn’t grow a beard or anything, but it was a huge physical change that I had to deal with. It’s not as bad now, but it’s something that I still notice after over twenty years. And then there are things like I’m at a much higher risk to cancer, particularly skin cancer. I have a risk of diabetes and high blood pressure. That’s the one big thing that I really do have. If I didn’t take blood pressure medication I probably would have a stroke in a short period of time.
—Something you said earlier struck me. You said your parents had more time to adjust to what was happening to you. For you, you went from having the flu to waking up from a coma and you said you weren’t aware that you were “dying”. As a close friend, to hear you say that, it’s quite devastating.
—Yeah. I don’t know if my family would ever want to talk about it, but I know some things and it was horrifying for them. One of the symptoms of end-stage liver failure is that you get mentally and emotionally out of control. This happens to everybody whose liver fails because your liver is no longer filtering any toxins in your body so people get violent and abusive. I don’t remember any of this, but I was tied down and I was yelling and cursing in different languages. At one point I was screaming, SCREAMING, “I’m dying, I’m dying, I’m dying!” I have no memory of that but they have all those memories.
—Do you have any memories at all from that time?
—There were actually days before I went into the hospital when I was apparently walking and talking that I don’t remember. I was living with my parents, I was in graduate school. I’d been sick for days and I have vague recollections of vomiting the night before and my mom coming in to ask if I was okay and me yelling at her to leave me alone. But the next morning I walked into the kitchen and told my parents, “I’m not well. You have to take me to the hospital.” I don’t remember any of that. They took me to the emergency room and apparently I lost my eyesight. And when they finally figured out, “her liver’s not working, she has to have a transplant,” they had to transfer me to the local transplant center. I don’t remember any of that. And I guess sometime after that I went into a coma and, probably thankfully, stopped yelling! But really, they had to tie me down, I was hitting people…. This is all secondhand information. Then from that Tuesday the doctors told my family, “she has until Friday. She can hang on until Friday.” Friday came and went and nothing happened.
—And at this point you were waiting for a liver?
—Yeah. I was so sick that I think I just went to the top of the list for my blood-type and whatever other factors. So by the end of Friday I was still in a coma and my liver still wasn’t working. And then another day went by. And then on Sunday morning I finally went into surgery and was in surgery all day.
—Do you have any recollection of that moment when you woke up and were told that you had a transplant, you had someone else’s liver and this was going to be your new life?
—It’s hard to describe the kinds of drugs I was on at this time. If you can imagine the worst kind of chemically induced alteration to your mind that you’ve ever experienced and if you can just multiply that…(laughs)… I was so doped up and my system was completely crashed. Because unlike most people who have transplants, other than the fact that my liver shut down, I was very, very healthy. So they had to crash my immune system.
—So that you wouldn’t reject this new organ?
—Yeah. And, at first, I did anyway. Most people do. That’s another thing in most fictional stories that they leave out. Most people have some…at least in my day. This was 1992 it was a different era in the technology of transplantation, still the early days. I don’t know with the drugs now if it’s easier to avoid rejection right away. So, I was doped up and high. It took me a long time to understand. I do remember at one point telling someone that I had a kidney transplant, which wasn’t right, obviously. I really had to learn that this had happened to me. It was like starting over. It was really like rebooting and starting from scratch. Because I’d also been gutted. I couldn’t walk, I was on these crazy drugs, I was hallucinating…the first moments I remember I wasn’t really lucid. I thought I was on the ceiling. I wasn’t, but I was in a foreign position ’cause I was in ICU and I was quite upright because there was such a huge risk of pneumonia. I had no immune system and there’s always a risk of pneumonia after surgery. I was so high that I thought I was strapped to some ironing board on the ceiling. I also remember being intubated. I don’t know how long that was after I woke up. And I remember they extubated and that feeling of…and I remember my dad standing there and being told a few times what had happened to me. And then sitting up for the first time…it really was like the first time ever. All of it. And I guess these things do change your perspective on life and death! There are a lot of stories. There are many people, other patients I met during that time, while I was recovering, who died.
—In some ways you’re a walking miracle! That has to change your perspective, not in the sense of feeling obligated to do great things, but the simple reality of what it means to have survived something like that and lived for over twenty years after that.
—Yeah. It’s complicated. When I was reading your Memorial Day blog, one of the things that’s mentioned in that interview is the guilt. It’s not necessarily guilt, but I definitely have that angst sometimes of “why me? I’m not doing anything with my life? Why couldn’t someone else….” I really related to that soldier, to that question of “why did that person die and I live?” And also, around the time that I had my transplant, there was a very close…(tears up)…this is really sad…a very close family friend who was diagnosed with leukemia…(long pause)… and she died at fifty. She was diagnosed the same year I had my transplant and she had different therapies…that was a time of tremendous guilt and desperation, like, “I had my transplant and she NEEDS a transplant.”
—A bone marrow transplant?
—Yes. And that’s really, really hard to get.
—What are your feelings around organ donation? This is another topic very much related to death that people don’t often talk about.
—This is such an issue because I’m not a huge fan of the medical establishment but at the same time the medical establishment saved my life. But I think there are countries in the world where people and governments treat the issue of transplantation differently and just given the way our U.S. medical system is, and given the way we treat health, I think there’s more that we could do to encourage people to be organ donors. It’s not something I’m on a soapbox about, but at the same time I see no reason, I see no logical reason to not have a society where everybody who can be is an organ donor.
—I automatically checked that box when I got my driver’s license and then got a letter confirming I’m an organ donor. I didn’t even think about it. But when I do pause…. I am so connected to my physical body, there is something about thinking about the fact that either I will separate from my body or my body will be this thing I won’t need anymore, that’s a big leap for me. I’m glad I’m on automatic pilot as far as checking that donor box, but…well, you said that your largest internal organ came from someone else. You’re living in a very integrated body in that sense and you’re also very connected to your body and emotions. I’m not sure what the question is here, but how do you experience that quandary?
—I think the fact that physically I was different after I woke up from my transplant is such a huge point. I remember the first time I saw myself in the mirror, it must’ve been at least seventy-two hours–by the time I was able to figure out I was actually a person–and I was bloated from the anesthetic. I looked down at my hands and they were huge. And then every morning they would weigh me and I would lose five to ten pounds a DAY. So I became very, very thin. The thinnest I’ve ever been in my adult life. So I went through all these changes. There are places on my abdomen but also under my arm, because I had to go on bypass so they had to cut a few places on my body, where I was numb. I felt like I had something strapped to my stomach for a long time. The physical changes were so marked. And there are still times when I look at my arms and they don’t look like mine and it’s been almost twenty-two years.
—You know, I think I asked that question because I remember having a conversation with my mom several years ago, just a few blocks from here, in Central Park. She told me that since she was a little girl, she has had a very clear understanding, and I don’t know if “understanding” is quite the right word, but she has had an understanding that she is in a borrowed body. Not that she is separate necessarily, but that she is in a body that’s been loaned to her and it’s her responsibility to take care of it. It was very loving. I thought of that story because in some ways this sounds similar: there’s you, and then there’s your body. Psychologically I think that’s huge. There’s a whole developmental stage when we realize we have hands and they’re connected us, and then I think something does happen where we often become this body. We become that overweight, inflexible, stiff-shouldered being.
—Over the past year I’ve been reading a lot about meditation and Eastern philosophy and some of what you’re saying about your mom reminds me of that. Basically there’s your body and then there’s your self. And then, of course, that begs the question: what is death? And where does the self go? I’m not religious and I can’t believe in life after death as described in any religion that I know about, but at the same time, it does give me pause to think about these people, like Nelson Mandela, all these people with specific personalities and experiences and memories and energy, where does that all go when they die? Even if everything we read in every religious text about life after death is wrong, I can understand why we make that shit up!…(laughter)… ‘Cause how can all of that just disappear? Where do those selves go? But I think that’s a pretty enlightened way to think and to hear that your mom thought that from the time she was young, to know that there’s her self and there’s her body that she’s in….
—Yeah. She’s quite extraordinary…. Did you ever have an interest in finding out where your liver came from? About the donor?
—There was a period of time, a long time ago now but also long after my transplant, when I did try. There’s a protocol you have to follow. You have to write to the organization that deals with the matching and donors, so I wrote to that organization and I wrote a letter to the donor family. I wrote a letter to thank them. I was going through a bad time and it felt like that was a positive gesture to put out there in the universe. But they never…. I can’t imagine, I mean for any donor family I can’t imagine what it must be like, but I can’t imagine what it must be like after more than ten years, to receive a letter. I don’t know for sure if they received it, but they should have. There’s no reason why they shouldn’t have. But again, a lot of years had passed…. I am curious. How does that person affect my identity?
—Especially because we’re finding out more and more how integrated our body is, how cells connect…
—I haven’t done any real research on how people change and find connections, but I think there are documented cases. This could be completely coincidental, but I really like and need coffee. I think I have some dependency on caffeine but coffee, in particular, is my vehicle, my delivery of choice. And I remember after my transplant not liking coffee. I remember it being delivered to me night after night at dinner and me not having any desire, not liking the smell. I do like it again now and am addicted to it again, but I do wonder. It’s such a specific thing. I wonder, did the person who gave me this organ hate coffee? I mean this liver would’ve had to have processed it. It’s also possible that my appetite was just different.
—I remember when my Aunt Adrienne was living with us in Chicago and she had been on a list for a kidney transplant for about three years at that point. We were driving down Lake Shore Drive one night and I don’t remember exactly how old my little brother was at the time–young, in grade school–we were driving and suddenly a young man on a motorcycle flew by us. He was clearly speeding and wasn’t wearing a helmet. My brother said very matter-of-factly with no maliciousness, “there goes Aunt A’s kidney!” There was something so shocking to me about a little kid suddenly seeing another human being and thinking “kidney!” But he was also assessing a very real case of life and death. Here’s a guy being reckless, without a helmet, and there’s a correlation between if this person dies it means someone else could live.
—That’s a great example of how families who live with this kind of thing view life and death in a way that other people don’t think about. I know someone who was waiting for a liver transplant after I had mine. He was at the point where he was carrying a beeper around. I never had to do that. And I remember on New Year’s Eve everyone would go out, but he wouldn’t ’cause it was like prime time for him. A, he needed to be somewhere quiet so he could hear his beeper. And B, how many people tonight might die because of drunk drivers? And every weekend it’s like that, the chances of organs becoming available go up.
—I know you celebrate both your birthday and your transplant day. Is there a difference for you between them?
—No real difference. But on my birthday I don’t care if people know or know how old I am. My transplant day is not information for most people. They don’t need to know. Mainly because I’m afraid I’ll be discriminated against. I struggle because part of me wants to be more of a public advocate, but in the job market, my medical history could be seen as a huge liability…. Life is so valuable, but also so fragile. It’s so easy to take a life. Any stupid little accident could kill you. In a way, life is miraculous and death is the norm. I really do think about death every day. Definitely today with the death of Maya Angelou, such an extraordinary person. What else can we do but celebrate and be thankful that she existed and that we were alive when she was alive?
—So true. And thank you so much for sharing your thoughts and stories. And for being such a phenomenal, a-typical human being!
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