Which Story Do You Live By?

As the one-year anniversary of my book publication approaches in January, I’m devoting Fridays from now until the end of the year to revisiting the book’s major themes. Each Friday, I’ll post an excerpt from No Easy Choice: A Story of Disability, Parenthood, and Suffering in an Age of Advanced Reproduction, with a question for reflection at the end. You’re invited to respond to the question in the comments. Given the emotional and important (if a bit contentious) conversation on the blog this week about how different people interpret their experience of living with various conditions—the different stories people tell about their lives—I decided to start at the end of the book, with a section on the role of story in reflecting on our lives.

Were my husband and I right or wrong to pursue PGD [preimplantation genetic diagnosis, or pre-embryonic screening, to attempt to conceive a child who would not inherit the genetic bone disorder I have]? Were we right or wrong to abandon it? The short answer is that I don’t know. Our story is simply our story. Living that story, I broadened my understanding of disability, limitation, choice, suffering, and the legacies we leave our children, but I’ve been unable to reach a firm conclusion concerning whether reproductive technologies such as IVF and PGD are acceptable for Christians under some circumstances, and not under others. That’s why I won’t end this book by telling readers what to do, but rather by encouraging them to tackle important ethical questions with diligence, compassion, and wisdom.

An acquaintance whose daughter also has OI was once confronted by a brazen stranger who asked, “What’s wrong with her?” The mother’s response was “Nothing. Normal is just a setting on the washing machine.” It was a great answer, a true answer. Nothing is wrong, in a fundamental sense of our human identity as children of God, with those who have OI or other genetic disorders.

But something is wrong with our bodies. They are not as they were designed to be. While I do not advocate fixing what’s wrong at all costs—there are compelling, important reasons why Christians should tread carefully when considering IVF and PGD—I do think there are plenty of disabilities that need correcting, including mine. At the same time, I know that Leah and I, and the millions of other people living with genetic disorders, bring a multitude of gifts into the human family, some of which are valuable precisely because they were forged in the crucible of our pain and suffering.

My story of living with OI, raising a beloved child with OI, and making reproductive decisions in light of OI really encompasses several stories. In one story, OI is a basic brokenness in need of fixing. In another, OI is just one of many human limitations in need of acceptance. When Leah is in the emergency room with a new fracture—drugged and defeated, yet receiving skilled, compassionate treatment from doctors and nurses who have made sick children their life’s mission—I can believe the story about the miraculous ability of modern medicine to fix problems that used to be unfixable. Or I can believe the story about the pain that no amount of drugs or toys or soothing words can banish. In reality, I believe each of those stories at different times, and sometimes several at once. My perspective on reproductive technology is influenced by these conflicting stories.

In Yann Martel’s novel The Life of Pi, the main character describes the crucial role of the stories we tell to make sense of our lives. Pi, an Indian boy, is the only human survivor of a shipwreck. He ends up in a lifeboat with several zoo animals, including a Bengal tiger he names Richard Parker. When Pi is rescued and tells his story, his tale is met with unbelief. So he tells a different story, in which he was on the lifeboat with his mother, a cannibalistic cook, and a sailor, all of whom die in various gristly ways. The ultimate question of the book is, Which story do you believe? Both stories are frightening and full of death, but one—the one with the tiger—also tells of mystery, hope, and miracle. Early in the book, Pi writes:

I can well imagine an atheist’s last words: “White, white! L-L-Love! My God!”—and the deathbed leap of faith. Whereas the agnostic, if he stays true to his reasonable self, if he stays beholden to dry, yeastless factuality, might try to explain the warm light bathing him by saying, “Possibly a f-f-failing oxygenation of the b-b-brain,” and, to the very end, lack imagination and miss the better story.

For Christians, one story—about the life, death, and resurrection of Jesus Christ—prevails over all the hurts and joys that influence how we frame our life story on any given day. Being a Christian is about continually and consciously choosing to believe that hope, healing, and life conquer despair, brokenness, and death no matter what each day brings. Christian faith is ultimately an invitation to believe the better story, about a God who fixes what is broken, heals what is hurt, and brings what is dead to life. That is the story to which I cling and the story to which I turn when I’m trying to make sense of my childbearing decisions and the promise and peril of reproductive technologies. The Christian narrative does not provide an obvious answer to whether it’s ethically sound for believers to use IVF, PGD, or other assisted reproduction techniques. But it does provide a grounded, hopeful context in which to ponder essential questions about whether and how we will bear children as technology offers us ever-more-sophisticated techniques to do so. Infertility and family legacies of genetic disease inevitably cause substantial pain, but the Christian story invites us, even while we are mired in that pain, to believe in and cling to the extremity of love.

What are some of the fundamental stories you tell about your life? Do those stories fit together coherently, or sometimes exist in tension with each other, such as the conflicting stories I mention above in relation to life with OI? If you are a religious person, how does the Christian or some other narrative inform how you view your own story? (Or, if you want an easier question, have you read Life of Pi, how did you interpret the different stories in the book, and do you plan to see the film?)

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • Jeannie

    This wonderful post made me smile for a few reasons. I just finished re-reading Life of Pi about 2 weeks ago, so the “better story” concept is still fresh in my mind. In fact when I was updating my Facebook profile recently (an excellent waster of time which everyone should try at some point) I added my favourite quotations, and all 3 of them answer your questions above:

    1. “To choose doubt as a philosophy of life is akin to choosing immobility as a means of transportation.” – from Life of Pi. This quote is (to me at least) not only amusing but foundational. I have 2 special needs children, and it is very difficult to figure out if that is part of God’s plan, a mistake, “evidence of sin in the world,” or something else. Sometimes I feel angry and cheated, sometimes just plain exhausted. Yet my story is based on belief in God, not ultimately on doubt. Faith is my means of transportation, the reason I can wake up every day and pick up my tasks and responsibilities.

    2. “The truth is always your friend.” – from Christian writer/counselor Henry Cloud. Or in the words of another beloved mentor, Parker Palmer, “God is the God of reality.” What is, is what we work with. There is nothing else. What I, or my kids, might have been is meaningless. God faces reality and the truth; so should we (God helping us).

    3. ““Such is oft the course of deeds that move the wheels of the world: small hands do them because they must, while the eyes of the great are elsewhere.” – These were Lord Elrond’s words in Lord of the Rings, and I love them. It is not easy to care for children with special needs. It is not easy to care for children. It is not easy to care. But Jesus too reminded us that the last shall be first, the smalll shall be great … the simple things I do today in obscurity and hiddenness will change the world. It’s hard, but there’s always strength to do what needs to be done.

    Again I am REALLY enjoying your blog. I checked out a few recent posts and thought Wow, she reads what I read and listens to the music I’m listening to and feels the same way about parenting that I do, hm, is this person living in my head? (Or is it just a pesky virus?) Thanks again and many blessings.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Thank you so much for your thoughtful responses. You are a wonderful writer yourself and I love how you manage to take what I’ve written and then use your own words to give me a fresh perspective!

      “What is, is what we work with. There is nothing else. What I, or my kids, might have been is meaningless. God faces reality and the truth; so should we (God helping us).” — I hemmed and hawed about what to post today, and one idea I had (which I might pursue another day) is on this theme. I was thinking of a post titled “If you are looking for a broad brush or a picture in black and white, you’re reading the wrong blog.” And then explaining that the primary thing that defines my writing, particularly around disability and faith, but also parenting and other stuff, is that I start with (and mostly stay with) WHAT IS rather than what could/should be. And what IS is often full of contradiction, tension, and paradoxes, like parents who both cherish their children just as they are and hope for a cure for their condition. This dwelling in paradox is a messy way to live, and to write, but it is the only honest way I know how to do either.

      Besides Hobbits, I’m also a fan of Henry Cloud and Parker Palmer. Any chance you also love to listen to Mumford and Sons? :) I’m glad you found the blog and look forward to hearing more of your insights on future posts!

      • Jeannie

        M&S? OH YEAH. But “I will wait” to talk to you about that some other time.

        • http://www.ellenpainterdollar.com Ellen Painter Dollar

          :)

  • http://www.patheos.com Deborah Arca

    Ellen, This post makes me so excited for the Life of Pi movie. Read the book years ago, and fell in love with it. But it’s been a while, so it was great to get a few choice quotes from the book here, and be reminded of the core message of “which story do you choose to believe.” Yes!

  • http://timfall.wordpress.com/ Tim

    “Our story is simply our story. Living that story, I broadened my understanding …”

    For me, that’s what life in Christ is about, Ellen. Living the story of the life he has given me tends to broaden me as well. Anyone who says that Christianity is stifling has never experienced the real thing. And as long as we’re trading quotes (thanks Jeannie for starting us on this) I’ll go with Chesterton: “The Christian ideal has not been tried and found wanting; it has been found difficult and left untried.”

    Tim

  • Ted Seeber

    My worst fear- and the fear that took me away from progressiveness entirely and turned me into a conservative- is that genetic testing of homosexuality and autism will one day yield prenatal testing for those; at which point the Neurotypical bigots will make us all go the way of downs syndrome children- 90% of which are now aborted.

    • DaveP

      > … is that genetic testing of homosexuality and autism will one day yield prenatal testing for those …

      If they are genetic. Homosexuality and autism often appear to run in families, etc, but the tendency to celebrate Christmas also runs in families, and celebrating Christmas is clearly not genetic.

  • Bill S

    I believe in taking advantage of medical advances wherever possible. It is reasonable for a couple starting a family to want to assure the best chance for their offspring by doing all that they can to bring a healthy child into the world. Having done that, they should love and nurture that child and accept it for who it is whether male, female, autistic, homosexual or anything else.


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