March 2013

Gina Frangello

features

An Interview with Emily Rapp

There are moments in Emily Rapp's memoir The Still Point of the Turning World that take us to places language usually cannot reach. Stark instances -- such as when Rapp is first informed of her nine-month-old son, Ronan's, diagnosis of Tay-Sachs, and she simply wets her pants right there in the doctor's office -- wherein her grief imprinted onto my brain and shook something loose inside me that couldn't be tucked safely back away. Rapp's impassioned, messy, brilliant memoir achieves raw truth by tapping into archetypes that live deep inside us all, buried carefully under layers of defenses that allow most of us to live our day-to-day lives without constant existential and personal crisis. After all, without reducing Ronan to a "symbol," what is the hideous prognosis of a dying child but, of course, the prognosis we all face, and can only hope to meet on a less fast-tracked scale? Rapp's son would slowly lose his abilities, as his body shut down, and Rapp and her husband were condemned not just to "witness" this, but also called to somehow construct meaning from it. But how is meaning constructed? In years? In accomplishments? Everyone knows those who survive to a ripe old age without seeming to have ever "lived." Yet even if we measure our humanity by something such as experience, what will this mean for a child who can never learn to even speak or walk, who eventually would lose hearing, eyesight, and the ability to swallow food? Can we measure meaning in terms of the inspiration we provide to others, or how much we are loved? If so, then Ronan's life was abundant in meaning. Yet even that paradigm is problematic, since so many people meet similar fates without a mother who is a writer to document them and share them with the world. In the end, meaning must be found simply in the moment. We matter because we are. It is our only hope.

In The Still Point of the Turning World, Rapp struggles with everything she has, to grasp it and share it. She met her son's terminal prognosis with a torrent of words, attempting to understand how humanity as a species processes such loss. Turning to philosophers, mythology, theology, and popular culture alike, Rapp passionately weaves a sweeping treatise on grief, and with it -- perhaps even unintentionally at first -- on the strange kernel of hope that lives within the human brain and allows us to construct meaning out of the meaningless, immediacy out of the Great Unknown, and unconditional love that refuses to detach even as all the "future pay offs" parents usually work towards are taken cruelly off the table. During a time when many would succumb to despair, self-pity and isolation, Rapp -- who is the first to admit that she had periods of all of those -- found something inside that enabled her to document that for which there are usually no words; to reach out and touch others in the face of her own pain; and to give universal, historical context to what, for a grieving parent, feels wholly singular. In doing so, she has become a personal hero to many.

The first time I published an essay of Rapp's on The Nervous Breakdown, I wrote to her that her work made me wish -- for the first time in a proudly "indie" career -- that I were a more powerful editor, at some canonical venue with a sweeping reach. That I could make her work "required reading" for all humanity -- that my fifteen years as an editor would have all been worth it if hers was the only work I had ever published. Now, less than two years later, Rapp has become something of a sensation. Her blog, Little Seal, was a Time magazine blog of the year and her book is out to sweeping critical acclaim. Life is nothing if not ironic. The truth is, I wish I had never read Emily Rapp's work, because I wish she had never had to write it. I wish this interview did not exist. I wish the world were different than it is, and that the howling pain inside, the voiding in a doctor's office, the sobbing against the wall of an airport, and the many mothers' empty arms, were not part of our human experience. Emily Rapp, however, is not a writer for such a "make believe" world. She is, quite simply, an essential writer for this world, in which we are all condemned and blessed to live.

Things have changed dramatically since the time you wrote the memoir. You made a very volitional decision to stop the writing at a certain point rather than providing an "ending" in a traditional sense, in other words, to not keep the narrative going until the point of Ronan's death or its aftermath. Will you talk about how you decided on the book's structure, and your reasons -- as a writer and a mother -- for ultimately keeping the final progression of your son's illness outside the terrain of the page?

I began writing the book before Ronan's active decline, but I was always "looking ahead," so to speak, to that eventual end. For two years I have lived with the stress of that moment, the pressure of living toward that eventuality. I think that fuels some of the urgency of the book, which of course began as a series of essays on a blog, not at all something I thought of as a book. I was writing to stay alive, quite literally. The writing and the grappling and the creating helped me move to the darkest points of grief and then back out again. In many ways, it was the only preparation I can think of (as a writer) for the death of a child. As a mother, I'm not sure you ever can prepare for such an event because you're not meant to. It's a primal code, I think, written in the strange parental code you never thought you'd be able to decipher until you have a child. Also, the facts of Ronan's decline were horrific and borderline maudlin and grotesque. When he did die, it was a mercy, because his body had been devastated, and there was nothing left for him in this life. But he did have a happy life while he was still able to eat and interact and have a positive somatic experience. I believe that. And I very much wanted his life documented in the book, in part because the details of physical demise seem essentially private, even if babies have no sense of that, and in part I wanted him to live on in the book, at least in words, after his death. I wanted a nine-month chronological structure, but I also wanted the book to be more than just the story of a dying baby; I wanted it to be about what it means to be a human being. For that reason, I didn't want those final details, which are very private to me, to be included in the book.

One of the things that first knocked me on my ass about your writing was its philosophical zeal. I have very rarely read contemporary memoir as infused with history, philosophy, theology, pop culture, literature, and mythology as yours is. It is no small task when facing the most intimate of pain to find a way to look outward instead of singularly inward. How have other thinkers influenced your journey and what did you seek in your intellectual interrogation of these other writers?

Believe me, I never thought I'd be opening the pages of a big doorstop book by Hegel for comfort, but I found it there. And in John Calvin (and I was raised Lutheran!) and poets like Louise Glück and Sylvia Plath, who can howl from the page without making a sound, and who use their brains and their hearts in equal measure, without sentimentality or leaping bunnies or sunsets, all of which made me batshit when Ronan was first diagnosed. Bad rhyming poetry about God and angels in cards with badly painted sunsets! No! I was losing my mind with that.

I gravitated toward philosophy because it gave my mind a constructive way to spin, and because there are no "answers" in philosophy. You come away thinking that nobody knows anything about anything at all, ever. And I found that reality (because it's the truth) comforting and profound in a way I hadn't when I was writing papers and complaining about the density of Hegel's prose in graduate school. Philosophy gave me something to pick at; religion gave me something to rail at, quite frankly; and Mary Shelley gave me a model for how creation "gone wrong" just means creation full stop. In other words, chaos. I wanted chaos and old stories. I wanted to read about how Gilgamesh runs around tearing his hair out and weeping when his best friend dies. I didn't want solutions or easy answers, I wanted the pure process of circling and wondering and not landing anywhere. My mind was alight, which kept me from those moments of somatic experience when I thought I would just die of grief and helplessness and rage. I read those thinkers because I didn't want to die. Neither did they, or else they wouldn't have tried to create or understand anything at all.

I first became familiar with your writing through your blog, Little Seal, and like dozens, then hundreds, now thousands of readers, I was instantly both mesmerized by the artistry and passion of your prose and catapulted into a place of wracking empathy for your pain. I became a little obsessed with you and Ronan, constantly checking your blog for updates, and finally contacting you directly -- I don't remember if I did it through your blog or Facebook or mutual friends -- to tell you how deeply your work affected me. Since that time, I've seen very similar responses online from others, people who have started to feel intimate with you, many of whom have still never met you, and who feel they love Ronan and that your writing has changed how they see their own experiences as parents. There has been a kind of "virtual vigil" online. And one of the things I love about you, Emily, is that you are not just this woman who has unwittingly been thrown into the position of "moving and inspiring" legions of strangers through your own grief process, you're also blunt, incisive, and have lost, as people who face intense pain often do, all patience with bullshit. So I have to ask you: are there points at which this ever becomes "too much"? All these strangers and near-strangers and online-friends who have become so invested in your life? Are there times when it feels invasive, or when you fear that people's interest stems not just from empathy or their own anxieties about losing their children, but also from the human tendency to circle tragedy like vultures? Do you ever feel overwhelmed by what your powerful work has wrought in terms of "community" and want to just... hide under a bed and not deal with anybody anymore?

I do hide in bed! Ha. Not really. You know, this is interesting, because as a woman with a lifelong disability, people have both intentionally and unintentionally been invading my privacy for years. They ask questions about what happened to me, tell me things like "you get around well" after a yoga class, things like that. So I never had, as a person, an expectation of privacy. And I think I'm pretty good at sniffing out the tragedy vultures, as I've seen that bird before, and it's not a very smart bird. Ignore it and it flies away. Most of the outpouring, I believe, has been about a boy who, without ego or intention or will, has inspired goodness in people and forced them to reconsider and reevaluate their ideals and ways of living. I think that's remarkable. But yes, when I get slightly prurient emails, I just delete them. Thankfully, I have a whole lifetime of experience in sidestepping the creeps (I hope!). And of course I find voyeurism repulsive, but I also think it's part of human nature (we all fear death; we all know chaos is just there, and if we move, we'll touch it), and I like to think that it stems from a place of benevolence, ultimately, even if it's expressed weirdly or fails to maintain personal boundaries, which more or less get shattered by grief anyway. When you write memoir you run this risk.

It's hard to tell people that the person you are in the book is a version of yourself and not you, the actual you whose life goes on in the time-space continuum, constantly absorbing new experiences and changes. For example, during the year of this book being printed and edited, I ended my marriage and fell in love with my current partner. That's not in the book, as it occurred long after the final chapter, and it might make people uncomfortable. It's like watching a movie and then seeing the star at a premiere and her hair is five inches longer. Of course. Time goes on. But time is essentially stopped on the page, stalled in story. But writers -- people -- don't stop. And of course with memoir there is a great deal of useless psychologizing of the author, which is inevitable, I guess, but is still kind of strange and sometimes irritating. In the end, however, I want people to respond to the story in the book, not to the person who wrote it. But I think that's a difficult separation to make.

You were born with a congenital birth defect and had a leg amputated when you were four, and have worn a prosthetic limb for most of your life. This experience, naturally, shaped you profoundly, and in fact your first memoir, Poster Child, centers around that experience, which probably at one point felt as though it would be the "defining" truth of your life. In what ways has the process of losing Ronan to Tay-Sachs changed your perception about your own identity with regard to not having the "normative" body? Are there ways in which things you learned through those struggles could be called upon for strength now? Are there ways in which that struggle now seems trivial to you? Are there things you wish you could tell your younger self, or other young women, who may be coping with body image issues or various disabilities, from the vantage point of where the adult Emily is standing?

In a way, I was built for this experience of having a child with a life-limiting illness, because although Ronan's diagnosis devastated me, the idea that things go wrong with the body came as no surprise. The diagnosis felt less like a blow to my ego (which I think many people feel but won't admit), and just a general blow to my life. But of course, in those initial weeks, I felt cursed, as if nothing I would ever do again would be right or correct. But as I wrote the book and met other parents with terminally ill kids, I realized, for once and for all, that there is no "normative" body or experience. Seriously. That idea is such bullshit, and yet we live under this myth as if its law. It's such a waste of time. And yes, I wanted to burn my first book for a while because I just thought, who gives a shit about missing a leg when I have a full life? But the issues in that book have not left me, either, because they are constantly shaped and reformed by the beauty and absurdity of life, and also because people don't know what to do with people with disabilities in general. So you walk around with that, always. And it's a silly distinction, us versus them, because we're all going to be disabled. All of us, eventually. What I learned during this experience is that my life is beautiful, with all its idiosyncrasies and deep sadness. I have known despair, and what I understood after that experience was how desperately I wanted to be happy. And happiness is compounded in its shattering beauty once you've known the reverse. So I guess I came to realize that the grief I've known in my life has been an expression of love, a reflection of its depth. Sometimes people (in general) seem to expect you to wallow in grief because it's what they believe they would do, but that's not necessarily true. People are stronger than they think. We fight for happiness, even when it seems impossible.

One of the amazing things about your body of work during the course of Ronan's illness is that I'm literally discovering that there is very little I want to ask you that has not been addressed by one of your prolific, passionate essays, not just in The Still Point of the Turning World but on The Nervous Breakdown, The Rumpus, Salon, the New York Times, RoleReboot, and elsewhere. Something that's compelled me a great deal, though, is the way you've written about "strength" and courage. Many well-intended people have said things to you like, "I don't know how you do it" or "I could never have the strength to get through something like that," as if you have... well, a choice, whereas the only choice, on some levels, is to find a way to get through it. Would you talk a bit about your concepts of strength when faced with the so-called "unimaginable"? You actually have interesting things to say, too, about the statement "I can't imagine," if you want to touch on that...

People say "I can't imagine" when in fact the reverse is true. They wouldn't feel so horrible if they couldn't imagine. I often told people when they said this that they should use their imagination (this was not always well received). This is an issue of empathy versus sympathy, and there's an important distinction to make between the two. Empathy is about imagining how it might feel to live that person's life, offering witness, asking questions about how to be most supportive, and not being afraid to feel what another person might feel. Stop being governed by fear, I say, and let yourself feel somebody else's madness and terror. Sit with the person's despair.

Sympathy is about distancing, and saying you can't imagine makes a grieving person feel exiled. It's by far the most irritating statement people say to me, and yet I know it's said in a spirit of kindness. But they shouldn't say it, frankly, because it's a lie, and it's cruel. Everything is imaginable. Look at the world. The human project is to imagine what we think cannot be imagined and find new ways of being radically empathetic. This is incredibly difficult, and all of us fail, but it doesn't make the effort any less crucial on an epic scale. When faced with a traumatic situation or a difficult circumstance, very few people just sit down and die. I have no judgment about people who do, but very few do. Humans are built to find a way through war, devastation, death, loss -- all manner of difficulties -- because we're also built to laugh, to sing and dance and eat together. You cannot have one without the other.

You used to be a divinity student, and were raised in a deeply religious environment. You no longer have faith, yet you continue to use theological philosophy and stories frequently in your writing. Will you describe the process of your loss of faith, and speak to how you to find religious myths useful -- and harmful -- in terms of understanding the human experience?

The joke about Harvard Divinity School is that you don't get out of there with faith intact. I think I was already having doubts about my belief in Jesus, which is obviously a necessity for calling oneself a Christian, but I've always been interested in theology, as it blends philosophy, literature, sociology, and history. It's a great mixed bag of experience and a record of how people made sense of the world.

In the Bible are archetypal stories that seek to address the greatest questions of human life: Why does injustice exist, and how should one work against it? What is right and what is wrong action? Where do we go when we die? I feel that Christianity has been so corrupted by the religious right in recent decades that we forget how these stories can help frame our modern experiences in a very interesting way. But of course, reading about the origins of the Bible -- the way it was redacted, written over hundreds of years, translated so many times across language and culture -- it's hard to think of it as "the word of God" in the strictest sense. In other words, nobody should get out of divinity school thinking that the Bible fell from the sky, in English, as a truth document. I don't think I ever actively believed that, but I didn't actively question it in a deep way, either. Studying religion at Harvard helped me do that, and it also made me more interested in how various truths can be found in this fascinating document that was built and nurtured and constructed by so many people, with the final end of -- and this I do believe -- helping people order their lives in a way that made them happier and richer.

Though, as you mention, it's not delved into in the book, you've written elsewhere about the fact that your marriage dissolved over the course of Ronan's illness and you and your husband separated. While generalities are dangerous when looking at individual dynamics, the fact is that divorce seems to be a statistically frequent outcome following the loss of a child. There is much written in grief literature about how to support a loved one through grief, but the roadmap of how to survive a mutually annihilating grief is far trickier. Are there rules? Are there things to "do" and to "not do" in a marriage or family where a tragedy or impending loss has knocked the members on their asses simultaneously?

I don't think there is a list of to-dos or not-to-dos; I think it's more of an issue of how people grieve, and the problem with that, especially when it comes to the loss of a child, is that nobody knows exactly how to do this until it happens. And if you and your partner grieve differently, it creates a huge divide, and to say that the slow loss of a child puts pressure on a couple is the understatement of the century. The other difficult thing, I think, is that both people are equally invested in the loss, and so there's never a breather, never a break. I am very proud of the fact that Rick and I were able to be committed co-parents, and that we did our very best for our son.

No one on earth would ever choose to go through the things you've faced these past few years. That truth sits alongside the parallel truth that sometimes hard-won wisdom and insight is burned into a person by facing what it means to look death in the face and live daily alongside it, and to somehow choose love and living in the present moment and hope for the future. Much focus has been given to the fact that your writing is helping other people, but you've written many times that you are simply a writer, and so the way you deal with things is by writing. How has writing helped you?

Writing saved my ass, and I mean that. When Ronan died, I felt a great sense of relief, in part because I had watched him waste away slowly over two years, which was a kind of living hell, and in part because there was nothing left on earth for him, and in part because my wildest grief happened on the day he was diagnosed, which was ostensibly the day he was given a death sentence. If I hadn't wrangled with those issues in my work, I'd be on the floor of my room, wrangling now. In a way, writing this book was like a preparation for grief, a kind of mental and emotional boot camp, and it did help me, this work, this thinking, when Ronan died. In his final moment, it helped me. So I won't be bitching about how hard writing is, or how it's so terrible to be an artist. Instead I am grateful for writing as a way out of the hardest things, which is actually a way into them. And now I know I can write through anything, and that is a liberating feeling.