Learning to Live with Loss

September 2, 2022

When Emily Rapp Black’s son Ronan was diagnosed with the rare and fatal condition Tay-Sachs disease, she turned to writing to make sense of her grief, what his short life would be, and what it meant to be his mother. Her memoir “The Still Point of the Turning World,” was written during Ronan’s life. Eight year’s later she wrote a companion memoir “Sanctuary” in which she explores learning to live after Ronan’s death, coming to terms with her loss, and learning that loss in not something that is overcome but rather absorbed into our beings. We spoke to Black about her two memoirs, her experience as a mother of a child with a rare and fatal disease, how she came to understand the meaning of resilience.    



Daniel Levine: Emily. Thanks for joining us.

Emily Rapp Black: Thank you for having me.

Daniel Levine: We’re going to talk about your experience as a mother of a child with a rare and fatal disease. Two of your books, The Still Point of the Turning World and Sanctuary, and your own coming to terms with life after profound loss. These are very different books in the literature of rare disease. Aside from their literary richness, most rare disease stories start with an incurable diagnosis, and then tell these triumphant stories of how a father or a mother wouldn’t accept that. And there was no treatment for their child and they went out and funded a researcher and developed a therapy. When your son Ronan was diagnosed as having the rare and fatal condition Tay Sachs disease, you seemed to have a complete grasp of what that meant and what it meant for Ronan’s life, what it would be, and what for your role as his mother would be. What was the way you processed that?

Emily Rapp Black: Badly. I mean, I think, yes, I had heard of Tay Sachs before, weirdly from a Law and Order episode of all things. So, I knew a little enough about it and I was tested for it, so I was aware of it. I just knew that it was going to be the thing that would be the hardest thing I’d ever do. I just knew it from the get-go and I knew that I loved him, but I also knew that I wasn’t going to be someone who chased a cure because to me, the science was incontrovertible and to do so felt like a different kind of suffering. It’s one thing to be still with your child and help care for them and relieve their pain if possible. But it’s another thing, for me at least, to put them through any kind of trial. That was a decision that I made and I understand that other people make different decisions, but I processed it through writing essentially. And through talking and, you know, 7,000 therapists or whatever in my friends, my parents, my family; but writing is a thing that helped me process it the most, which was a surprise to me. Yeah.

Daniel Levine: You mentioned that you were tested. This is a disease that’s associated with Ashkenazi Jews. You’re not an Ashkenazi Jew.

Emily Rapp Black: I am not. 

Daniel Levine: What compelled you to get tested and can you explain why, even though you were tested, the results didn’t show anything?

Emily Rapp Black: Sure. I was born with a rare congenital birth defect, so I have to wear an artificial leg and have since I was four. So, I was like, I want all the bases covered here and Ronan’s father is of Ashkenazi Jewish descent. And so I thought, okay, I’ll just get the test. And they were like, you don’t need it. And I was like, I’d like to have it anyway. And so, I did the traditional test for Tay Sachs, and this has changed. This is like 12 years ago. So this may have changed. I don’t actually know, but at the time when I was having the test, it’s part of the Jewish panel. And so that particular test tests for the most common strains of Tay Sachs within the Ashkenazi Jewish community. My Tay Sachs strain is not Ashkenazi. It’s actually Sephardic from Northern Africa. I have a very different strain that doesn’t show up on the traditional test. It would have to be a different kind of test for that to appear. Ronan’s father, of course, was an expected Ashkenazi Jewish mutation. I have a different mutation. There are like a hundred plus mutations of Tay Sachs. The traditional standard pregnancy tests only tests for seven to 10 of those. So, that’s why it didn’t show up.

Daniel Levine: People think of grieving as something that comes after loss. Still Point was written during Ronan’s life, but there’s an overwhelming sense of grief throughout the book. Grief, not only for the things you and Ronan won’t experience, but the inevitable loss you’ll be facing. What have you learned about grief through this process?

Emily Rapp Black: There’s a quote, I think it’s real key, that says, and I’m not going to say it completely. But he says love and death are the greatest gifts we’re given and mostly they pass by us unopened. And I feel like being that close to death and dying has made me appreciate life in a different way so that it was a surprise, like, it just made me want to live because he couldn’t if that makes sense. And grief is a lifelong thing. Grief is not something that happens and then is overcome. You don’t go over a wall until non-grief, you’re in it for the duration. And it comes out in weird ways. It’s like drone and died in 2013. Just a couple weeks ago, I was in San Diego and I wasn’t even really thinking about him. And I suddenly had this horrible sadness that landed on me thinking and he popped into my mind and I was just sobbing and it was okay. It’s not like that happens a lot to me, but it’s grief, it’s in you. It’s like in your DNA after that if you want to look at it that way. It’s something you have to continually process, and it’s also something that our culture wants to be over with, like done and dusted. And it’s just not that way. So in the groups that I work in—I run a women writing through child loss writing workshop, we always talk about how grief is just this strange windy road and you’re on it, you know? And the only thing, the only way to sort of be on it and be okay is to have people on the journey with you and to understand that it never really ends. It just changes.

Daniel Levine: You mentioned you were born with a birth defect. You had your leg amputated just above the knee as a child. How did that experience shape your approach to mothering a child with a rare disease?

Emily Rapp Black: I don’t know, it’s so different, right? Because it’s such a different disease. Mine was fairly physical and with Ronan, obviously it was his whole system was just broken. His whole body was broken. I think I was mad about it at first. I just felt like I did this myself. Why do I do this again? So, I had some anger around it, but I also understand that. And I mean, obviously parenting him clarified to me that when you have a kid, you love them, that’s it like, you just do, they’re here, and you do everything you can for them. And that was no different than if he had been non-affected by Tay Sachs, and that’s how my parents were with me. Like, okay, here’s the situation. It’s maybe not what we thought it was going to be, but this is what we’ve got. So, I was surprised, because I’m not exactly a practical person, that I was very practical about that. I was like, Nope, here’s what I want to do. I want him to have high quality of life. I don’t want to be in the hospital all the time because that’s not a fun place to be at the end. If the end is going to be the same, I want him to have music and anything that can help him enjoy his body for the brief time he’s here. That just was clear to me from the get go. And I don’t know how much it’s linked to my own experience, but probably if I thought about it more, I just think when you have a different body, there’s nothing you can do about it. You just have to deal with it. I had a different son and I had to deal with it and so I did.

Daniel Levine: There are many writers and poets who are present in both of your books. Mary Shelley is among the most prominent and Still Point both because of her own story and because of her work. What spoke to you about Mary Shelley?

Emily Rapp Black: Oh, I’ve had a Mary Shelley thing my whole life. I mean, when I read Frankenstein for the first time, I so identified with the monster. I really understood this idea of not being understood physically and how that can impact your emotional life. I’m not saying I’m a monster. I’m just saying I really felt the book was so compelling and I still do. So, I’d always had this kind of fascination with Frankenstein’s monster and this idea of what do creation and responsibility—how do those two things go together? Like, you create a being, how responsible are you to that being? And what happens if you don’t take responsibility or if you reject that person or that being that you’ve created. And to me, it’s like a giant story, or metaphor if you will, about the power and perils of creativity, as well as love in a parental sense. And also, Mary Shelley’s life story is very compelling and she did lose children. She was a very young writer. That was also really compelling to me, but more than anything else, I think the story just touches on so many different things in a very propulsive and interesting and very 19th century way. I mean, when you read it now, you’re like, this is a 19th century novel. It’s a little bit ridiculous, but it’s still really great.

Daniel Levine: One of the things I was very conscious about [while] reading Still Point is your husband, Rick, who’s present in the first paragraph, but gone from most of the book. And when he does show up, he’s a little more than a piece of furniture. You say he was a good father in Sanctuary. You add that he was not a good husband and you were not a good wife. You talk about this briefly in the afterward of Still Point. And again, in Sanctuary, there’s a bitter email that he sends that’s very painful to read about, but his absence was noticeable to me as a reader. And it intensified a sense of loneliness I felt reading about your experience being Ronan’s mother. There are many marriages that don’t survive caring for a critically ill child. Why did you choose not to address this more overtly as it occurred?

Emily Rapp Black: Out of respect for Ronan’s father. Yeah. It’s my story and he’s a part of it.  When you write nonfiction, you have to understand that you are telling the story of other people and he didn’t want to be a part of it. And so I respected that and I still do. I think that if you don’t want to be written about and it’s something so intensely close to you and so heart wrenching, then you should have that privacy. I also think too, for me, having had a disability, I’ve never had privacy my entire life. I’ve never had a sense of privacy. And I think that not everyone is like that. So, I did it out of respect to him and I the things I needed to say that showed how they impacted me, but I didn’t want to editorialize and I didn’t want those scenes in there partly because they’re just really painful. Part of any kind of writing is that what you exclude is just as powerful as what you include. And so all of the exclusions that I have in there are out of respect and honoring a request from him.

Daniel Levine: You talked about writing as a way to process. Good writers, no matter what they’re writing about, are often writing about writing. You’ve studied writing, you teach writing, writing again is a way to process the world. What role did writing play in your ability to come to terms with Ronan’s condition, be a mother to him and live beyond him?

Emily Rapp Black: I mean, it did everything. It was everything, which is a surprise. Writing was never something that I was like, yay, writing. Even though I’m a writer, I always saw it as, you know, it’s not easy. And writers are always yammering on about how hard it’s to write. It is, but for me it was like, I’ve always had a very active life of the mind and I went right up there and I was like, thanks. I got all these resources now; it’s like this giant distraction. But more than a distraction, it’s a way for me to try to make sense of this thing that doesn’t make sense to me, it’s like a complicated puzzle. There are all these other people, poets and thinkers, who’ve talked about these human issues of life and death and unfairness and chaos. And so, how can I marshall those things for comfort and also just to try to wrangle with questions that can’t be answered. I mean, I was a philosophy major. I’m all about the questions that can’t be answered, but I think there’s value in the trying and then the labor of wrestling with them. That’s very important to me and I had forgotten that until this happened because I was not a philosophy professor. But that really was a thing that kept me tethered in the world, to be honest.

Daniel Levine: Sanctuary was published eight years after Still Point. Ronan is very present in this work, although through memory. You found love and remarried and gave birth to a healthy girl, Charlie, who you found your door at the end of suffering. Two words are prominent in this book. The first is sanctuary, its title. Sanctuary shows up in many forms in the book: you live in a church; Kent, your husband, becomes an island of safety to you; your long runs and two hour stationary bike workouts are a form of sanctuary for you; and the world of poetry and literature is also a place you turn. What does sanctuary mean to you and what is the importance of people going through an experience like this to have a sanctuary?

Emily Rapp Black: I think sanctuary comes in so many different shapes and sizes and manifestations. For example, friendship is a huge sanctuary for me—you know, community and that’s really present in both books because I’ve always had a big community of chosen family in addition to my family. And I think people go through a lot of stuff. Some people go through more than others, but everyone’s carrying something. There’s a Plato code, I can’t remember, but everyone’s carrying around these wounds and sometimes you just need a place to set it down, whether that’s with a person or in a relationship or an actual place or an activity, or an intellectual exercise, because we can only bear so much. So, having a place to just rest, like what I wanted people to feel in Sanctuary, like the images that kept coming to me, which is why there’s this whole section about Viking ships, just like sitting in a boat, you’re in the water and it might be kind of bumpy and you might go over some bumpy waves and be a little scared, but you’re in this container and you’re going to be okay. Right. You’ll be changed, but you’ll be okay. That was what I wanted people to feel. I think it’s really powerful. I mean, I think tThe hardest thing about going through grief is the loneliness that it inevitably evokes and the only solve for that for me has been books, literature, and people.

Daniel Levine: The other word that’s prominent in the book is resilience. This is a word when it first appears in the book that you explain you don’t like. Why is that? What don’t you like about the word resilience?

Emily Rapp Black: I actually think the root word is quite interesting. I just think people misuse it, they use it as a synonym for strength and that’s not what it means. It means a combination of vulnerability and resolution. I just think I heard it all the time, like, oh, they’re so resilient. And what they meant was they’re so strong, but resilient is a much more complicated word than that. and it doesn’t just mean brute strength, or grit, or powering through. It means to break, to bend, to break and to rebuild. it’s just different than this kind of like a sledge hammer of strength. Like I’m just going to keep going. It’s something else. It’s about being vulnerable and open and willing to be cracked open, and that’s when things shift and a new kind of resolve comes in,  a new reason or purpose or meaning of life or living comes in. So, I just felt like it was being misused.  I wanted to have people think about the word in a different way.

Daniel Levine: You actually explore resilience from Viking ships to butterflies. One of the things that seems to bother you about the term is the intentionality assigned to it. It seems to me that resilience is not always a function of the desire to survive. Either you survive or you don’t, there is no fault, no moral judgment assigned to either outcome. How have you come to understand resilience, being on the other side of this now?

Emily Rapp Black: I think the whole idea is that you’re never on the other side of chaos or potential heartbreak like that. That’s the lesson for me. So, you are always shifting and shaping and being broken, open and healing, and being broken, open and healing. It’s not a one and done process. So for me, accepting the sort of turbulence of that word at its root was really important and continues to be important to me. I think have this idea that we go through something really hard and then that’s our share of it and we don’t have to go through hard things again, and that’s just not true. People go through hard things their whole lives. So, I think that narrative needs to be complicated. I also think there’s this American cultural phenomenon. We have this idea that if you work hard and you are strong enough and you work hard enough that you can make things better and that’s just not true, sometimes it’s not true. And that doesn’t mean that the person who’s trying to make it better or saves their kid or changed their life, or whatever, is a failure. It just means that the expectations are unrealistic. And that whole overcoming narrative permeates so much of how we think about our lives and their trajectories. And it can be really devastating to people. I know it was for me.

Daniel Levine: To that point, I want to read another passage from the book. You write, “There is no recovery from trauma and loss. There exists no Phoenix from the ashes as an inspirational model. Instead, the integration of an event happens incrementally through the repeatedly walked labyrinth of time and memory—that great nexus of healing sparked by emotion. It’s almost as if we must metabolize the event in our bodies, as if we could eat and experience, swallow it whole feel, it churn in our bellies and bowels. I like this idea that everything that was part of an experience becomes part of one’s physical self, part of blood and bone and water.” What would you like people to understand about experiencing grief, loss, or the idea of resilience in this sense?

Emily Rapp Black: I think to be a human person is incredibly complicated, which is not a very profound statement, but we don’t know, we have so little control in some ways about what happens to us, but we can control how we reframe it and the people we reach out to, and the stories that we tell. I think storytelling saves people’s lives. I absolutely believe that. And that when you’re in a human body, you have experiences that other human bodies have had across time and history. So you’re in a conversation with other people who are once alive and will be alive. And that to me is a very comforting idea as strange as it may sound, for example, like in my story with Ronan. So many women have lost children and will continue to lose children and haven’t lost children. All of those stories—to tell them and to speak them and to make them beautiful and true, even if they’re brutal is to me what the goal of an artist is, that’s what artists do. They’re like, look at this hard thing, let me take you with me. Let me teach you something about being alive in all of its complications and heartbreaks. Otherwise, I just don’t have any interest in living any other way. Obviously parenting Ronan completely changed my life in literally every way. And he just clarified so many things for me, not that there’s a lesson or whatever, and I’m trying to make him into a lesson, but I just think he showed me, he brought me down to the root of what it is to be human and what it is to love. And it’s both beautiful and completely terrifying.

Daniel Levine: If you’d like to hear Emily or meet her, you can do so at the Global Genes Rare Patient Advocacy Summit, which runs from September 12th through the 14th in San Diego. You can find more [email protected], Emily Rapp Black, author of The Still Point of the Turning World and Sanctuary. Emily, thanks so much for your time today.

Emily Rapp Black: Thank you.

This transcript has been edited for clarity and readability.

Stay Connected

Sign up for updates straight to your inbox.