Obnoxious Questions People Ask Me About Writing About My Dying Son

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If Emily Rapp was a man, would people still ask her annoying questions about writing about her terminally ill son?

Since I began writing about the experience of parenting my son Ronan, who is almost 3 years old and dying of a terminal illness, I’ve been asked this question several times:

Don’t you feel strange about making money off your sick son?

I am a writer; I write. This has been true for the past 10 years since I’ve been publishing essays and short stories, and it was true before, when I was writing crappy poems with a flashlight in my closet after the rest of my family had gone to bed. I’ve written about what I know or about which I have an opinion—ranch life in Wyoming, pre-European Union Dublin, the experience of having a lifelong physical disability, particular political issues that interest and affect me and those I love, life at an international aid agency, sex, and Judeo-Christian theology. This single question, in both cases asked by men, reveals deeply held convictions about women (and women writers) and what they are expected to do and prompted me to ask (and answer) a series of my own questions.

Would you have asked me this question if I was a man? I don’t think so. Instead, I believe people would regard me with awe and wonder, applauding my brave efforts as a father documenting his son’s life. My friend Rachel (also a writer) tells the story of her husband pushing a pram into a crowded café in Manhattan and the entire room breaking into applause. Perhaps, despite our modern ways of thinking, men are not expected to nurture, which if this question is any indication, is still perceived as an activity that happens in the domestic realm and nowhere else.

I spend plenty of time alone with my son; I sleep with him, bathe him, feed him, and change him; no, not every day, because his father is also partly in charge of his care, and like every other parent, I do need time to myself and time to maintain and deepen the other relationships in my life. And I write about Ronan. A lot. Does the fact that I have written a book mean that I have not grieved appropriately or been sad enough? I spend plenty of time weeping and flailing and wanting to crawl out of my skin, but these are not moments I would reveal to mere strangers, but only to people I trust and love deeply. Believe me, I am sad enough.

Is it a sign of authentic grief to throw oneself on the funeral pyre with one’s dying child? To shut off and shut down and give up? This works for some people, but I believe it is the harder way to grieve (and this has been backed up by hours of grief counseling). I truly believe that part of nurturing my son is making sure the story of his life and what it means and has meant to me and others is rendered in a beautiful, generous, artistic way. This is my way of making Ronan live on in the world, in a written sense, long after his body has left it.

Certainly, there is a rage-inducing helplessness that I am totally unable to protect my child, which is every parent’s primal instinct and desire. But suddenly, a woman, a mother, and a writer who still longs to be engaged in the world, engaging to others, intellectually switched on and yes, occasionally happy, offends what we know about grief, especially of this epic kind that is, in some ways, still a taboo topic to discuss. It’s just so sad! People shriek. Yes, it is sad, but my life is full of all kinds of beauty of which this sadness is an inevitable part. Life is hard for everyone, I’m tempted to say. Grow up.

Would selling a book and being a financial success truly solve the problems of your life? Yes, I have sold the book about Ronan’s life to a large New York publishing house. Yes, this has granted me some financial freedom and critical attention. Yes, I have experienced several career milestones in the last year that I thought, 10 years ago, would have made me unequivocally happy. I would give all of this up to save my son—I would give him my life if I could. I have learned that no external success solves the problems in anyone’s life, it simply creates more complicated ones. There is no endpoint of perfect happiness. If someone entered a room and threatened to kill every single person inside—myself, other people’s children, other people I loved—I would not hesitate to say yes if it meant saving my son. This is not an ethical or moral response, but it’s a mother’s response. To assume that any amount of fleeting literary success would compensate for the death of my son is abhorrent to me, not to mention completely without truth.

No, I do not write about flowers and leaves and the weather, or at least not in any focused or deliberate way. This is not because I don’t care about these things or believe they aren’t adequate literary topics, but simply because they are not my priorities at the moment. I write about death, and dying, and sex, and desire, and old dead white philosophers whose occasionally outlandish systems of thought help me grapple with the deepest issues of human life that affect us all.

It is the grappling that matters, not the conclusions. It was Ronan’s life that mattered, not the sad fact of his impending death. If I wrote about my son in a sentimentalized, cloying, tragic way, perhaps I’d be accused of a woman who writes “silly little stories” instead of epic American novels that engage deep human truths in profound and complicated ways. If I try to engage both a reader’s mind, heart, and yes, even humor, in this story about my son, which has epic proportions in all kinds of ways, then I’m a heartless bitch. It’s a no-win.

And indeed it is a no-win. My book will be published in March. My son could die at any time, at any moment, any day (although this is true of everybody). So yes, I feel strange, but not about writing. I feel strange and vulnerable and jangly and rock bottom sad because I’m watching my son die, and writing about him has saved me from going right over the edge with him. Writing Ronan’s story is my task as a writer, and I happen to be a woman who writes, as well as a woman who loves her son deeply and madly, and also a mother who, despite this situation, continues to love her big, weird, beautiful life.

Emily Rapp is the author of Poster Child: A Memoir (BloomsburyUSA, 2007) and The Still Point of the Turning World (forthcoming from Penguin Press, March 2013). She is professor of creative writing and literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico.

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