The Still Point Of The Turning World (6 page)

In junior high I empathized with Dr. Frankenstein as well. All that work, and then
poof
! A monster in the house! Not a cuddly baby, not a child prodigy, not even a proper man. A menace, a fiend, a wretch, a freak. Who would want to be blamed for creating a monster that lives to wreak such havoc? Reconsidering the book in the context of Ronan’s life, I wanted to tell Dr. F to man up and stop being such an asshole. Be a father already, because that’s what you are. You created this being who was waiting and worthy of your love, and actually a pretty nice guy until you treated him badly, and then you abandoned him because you were scared and unprepared for the randomness and chance that is a part of every creative act, and because his future was dangerous and unpredictable, and because he wasn’t a small, delicate-fingered, to-the-manor-born scientist with a fancy Swiss pedigree, and because people were no doubt going to look at him and judge him and then judge you. Get over it. Havoc happens on its own, with or without your clever machinations. Stand by your man, you cowardly ninny, even if he has greasy yellow skin and a big head and has to crouch down when he walks through doorways. Understand that when you die, it will be the man you made and tried to destroy who weeps over your grave, his wish granted but his heart broken.
Oh, Frankenstein! Generous and self-devoted being! What does it avail that I now ask thee to pardon me? I, who irretrievably destroyed thee by destroying all thou lovedst? Alas! He is cold; he may not answer me.

7

I held tight

Thinking

What the hands lose

Is for the eyes to find

And what the eyes lose

Is for the heart to find

But the heart

When it loses a thing

Is left to fend for itself.

—Philip Pardi, “Two Hands”

R
onan and I took a lot of walks in February, his little face pressed to my chest, his body snuggled up to mine in his front pack, his gurgling voice ringing out into the cold, still air. Several people expressed to me that because all parents want their children to be perfect, they had trouble imagining my feelings about Ronan’s condition, and, I guess, about Ronan. They wondered why Rick and I hadn’t both been tested for the Tay-Sachs gene, as if we’d given no thought at all to starting a family, or they tell their own stories about being nervous about Tay-Sachs and then feeling so relieved when their children turned out to be just fine, that they weren’t like Ronan, that they didn’t have to live our life. The comments in missives tinged with pity and selfishness made me livid, and seemed more about the senders than about Ronan. They were useful to nobody in the absence of compassion, which was always in short supply and needed by everyone. These things were said, no doubt, in a spirit of support, and I understood that people struggled for the right words with which to respond to people’s difficult or “abnormal” situations. I’d been rattling off my life story to strangers in elevators for years when asked, “Oh my. What’s wrong with you?” I would respond with a quick story about me, my artificial leg, how it happened, et cetera. “Oh, uh, I’m so sorry.” (If there were a single phrase I could choose never to hear again in my life, it would be “I’m sorry.”)

Mary Shelley heard “I’m sorry” often, no doubt, from her married lover and from friends and family who helped her bury her dead children. Imagine the response to this letter from Hogg, a friend she wrote to after the death of her first child, a premature daughter:

My dearest Hogg my baby is dead—will you come to see me as soon as you can. I wish to see you—It was perfectly well when I went to bed—I awoke in the night to give it suck it appeared to be sleeping so quietly that I would not awake it. It was dead then, but we did not find that out till morning—from its appearance it evidently died of convulsions—Will you come—you are so calm a creature & Shelley is afraid of a fever from the milk—for I am no longer a mother now.

A woman, a writer, a creator speaking here from inside a tunnel of grief, a tunnel that in those dark days of winter I was slowly learning to navigate, learning its exact size and shape and levels of darkness and how these shifted from moment to moment. I wanted to go back in time and appear as a ghost who miraculously lights a candle in the middle of the night at Mary’s bedside, or show up in one of her waking dreams bearing a magic wand, like that luminous fairy queen in
The Lord of the Rings
who gives Frodo a special little stick to use “when all other lights have gone out.” Or maybe I’d just play John Lennon’s “Imagine” on a constant loop from an invisible sound system, the song that was playing as I sat writing by my own fire in those early months of 2011, knowing that someday I would be sitting by the same fire but I would not be the same person, and I would no longer be a mother.

It was difficult—maybe even impossible—for me to imagine that Ronan was not, in his own way, perfect, if only because he was living the only way he could. There was a great deal of perfection—and rare innocence—in that. He would never look like the other kids; he would be alone at the free throw lane in almost every respect. “I don’t want to take him to the children’s play area while I do yoga because he can’t
play,
” Rick said to me one afternoon, his voice cracking. “What if he just sits in the corner by himself? If he falls over he can’t push himself back up.” Neither one of us could stand the thought. There were so many things from which I had no way of protecting my child, thoughts that put me right at the thinning edge of sanity. But one thing I knew: Ronan would not, like Frankenstein’s monster, be sitting out in the middle of a dark forest, lonely, perched on a log and wishing somebody loved him. Not my boy.

Ronan was mine. Mine and Rick’s. Of course we would have done anything to help him, to save him, but we didn’t want him to be another, different baby. We couldn’t imagine not having had a part in creating him, or not having known him, or loved him so fiercely. We weren’t running away from him or rushing out of any rooms. We stayed put. And we never wanted him to be perfect. We wanted him to
live.

I’d never experience with Ronan so much of what I’d been looking forward to as a mom: marveling as he acquired language, teaching him to ski, traveling with him to all of the wonderful places I have lived, helping him learn how to be a unique person in this mad world. He missed all his milestones on the pediatrician’s developmental chart; there were no more boxes to tick or leave blank. I was angry about the unfairness of that, but I also knew this: he would never experience shame, regret, fear, self-loathing, worry, anxiety, or stress—all products of an ambitious search for happiness or recognition or whatever else we think will save us, things Dr. Frankenstein thought would save him and that led to his heartbreak and demise, things he thought would free him but only bound him more tightly. Ronan would never wish himself to be different. That state of existence was so far outside my own experience that I could scarcely imagine what it might be like. My terminally ill son was absolutely wondrous to me in this way, and there was no box to document this amazement, this respect, this difficult lesson.

Americans love the idea of “the pursuit of happiness.” We love that this mandate is written into our fabric as a people. Ronan taught me that this myth has outlived its usefulness, if indeed it ever had any. Or else we’ve misread it, because this notion of ambition has been a problem, literally, for thousands of years.

In the Babylonian myth of Atrahasis, the earliest recorded version of the Flood story and a precursor to the biblical story of Noah and his famous ark, the gods get fed up with lifting stones and digging out rivers. They want rest. They demand that other creatures do some of the work so they can hang out and be immortal and engage in smiting and other violent and more entertaining pursuits. They stage a revolt, and it is eventually decided that new creatures—humans, made from blood and dirt—will be created to do the shitty, backbreaking stuff. And so the gods get their freedom and humans are left to try and break free of their circumstances, to change their lives.

Our country runs on the pursuit of achievement and ambition, and on the effects of individual striving. It’s a capitalistic and therefore limited and problematic approach to vocation and purpose. For most of my life I was an ambition addict (be the thinnest, the smartest, the funniest, the
best
),
and I found fuel for this addiction everywhere I looked. On bumper stickers (“My child is an honor student at—– School”); in the assumed joys of becoming an Avon saleswoman (“It’s amazing what you can achieve with a bit of passion and hard work; call 1-800-AVON!”); in the barrage of ads for diet products that always appear on January 1 (“5 weeks to a NEW YOU! Includes the cost of food!”). In 1981, as the poster child for the Wyoming March of Dimes, I was quoted in the local newspaper as saying, “If you believe in yourself, you can do anything.”

Do more, be skinnier, get richer, be famous (and then be even more famous), get a bigger house and a bigger car and a hotter girlfriend and a better life.
Be
better. When did having a good life mean living one that other people envied? Behind this drive to achieve lurks a deeper desire to be transformed. The standards for what is “normal” have become so formalized and yet so restrictive that people need a break from that horrible feeling of never being able to measure up to whatever it is they think will make them acceptable to other people and therefore to themselves. People get sick with this idea of change; I have been sick with it. We search for transformation in retreats, juice fasts, drugs and alcohol, obsessive exercise, extreme sports, sex. We are all trying to escape our existence, hoping that a better version of us is waiting just behind that promotion, that perfect relationship, that award or accolade, that musical performance, that dress size, that raucous night at a party, that hot night with a new lover. Everyone needs to be pursuing something, right? Otherwise, who are we? How about, quite simply, people? How about human? This is the great message of Shelley’s
Frankenstein.
Part of Ronan’s myth was this acknowledgment that we need the freedom to be people, that’s all.

On Valentine’s Day I dressed Ronan in his “All You Need Is Love” T-shirt with its black-and-white photograph of the Beatles. I took him to acupuncture with Dr. Janet. I fed him heaping spoonfuls of chocolate ice cream. I wondered what he would be like next year—what kind of medications he would be on, what kind of movement he would still be able to make, if he would be able to see me, if he would still be eating comfortably, if he would even be alive. What kind of baby would he be? The answer: mine. Even after he was dead: mine. Wasn’t that enough?

Not for everyone. In the summer of 2002 I taught “gifted and talented kids” (I don’t believe in that terminology, as it almost always means rich kids, nothing more) at Stanford for a summer session. The class was called “Writing and Imagination,” and the kids were smart and funny and, of course, creative, although several of them did complain to me that they had gotten stuck in my boring writing class because their math scores weren’t high enough. Most of them were also curiously stressed out. They would write a story or a poem and then nervously show me what they’d written, asking, “Did I do it right?” I tried to explain to them that creativity, by its very nature and definition, allows for variation; that there is no “right” way. They blinked at me and returned to their seats, often giving me the hairy eye because I’d refused to answer their question with a simple yes or no.

One girl, I’ll call her Sananda, never asked me if her stories were “right” or “good.” They were, in fact, extraordinary. She took risks in terms of image and metaphor and plot. Sometimes she added beautiful pencil illustrations in the margins. Our classrooms were often mysteriously without air-conditioning, and so we did a lot of our writing outside. Sananda liked to be apart from the others. I’d see her sitting in a patch of shade away from the group; writing, yes, but sometimes looking dreamily off into space. Once I watched her turn her hand over and over again in the stream of water from a fountain for almost five minutes. She smiled at me when she turned her stories in and then trotted off to the cafeteria, where every day, without fail, she ate French fries and a chocolate milkshake for lunch (ah, writers and their rituals). During mealtimes the other kids rattled off the different camps they were attending that summer: Shakespeare camp, drama camp, dude ranch camp, art camp. “That’s a lot of camps,” I said to one girl. “My parents like to get rid of me during the summer,” she said matter-of-factly, and turned away to fill her glass with a weird mixture of Coke and Sprite. Sananda dipped her fries into her milkshake (two at a time, I noticed, always two) and stared out the window. I wondered why she was so different from the others.

And then I met the kids’ parents. One mother demanded that her son put a quarter in a jar during mealtimes if he didn’t use a new vocabulary word during conversation (apparently she kept an exhaustive list at the dinner table). A father asked me, “Approximately how long, in terms of hours, should it take him to complete a publishable short story?” My response—“Decades”—did not go over well. Another mother told me that even though her son wasn’t as smart as his sister, she hoped that he could
at least
show some creative prowess; otherwise he’d never get into Harvard, and that would clearly be a disaster. The kids sat with their parents during these conversations and heard every critical word. I felt them shrinking before my eyes, and all my desperate heaps of praise in that moment would never compensate for the scathing critiques from the two people in the world who were supposed to love them absolutely, without conditions and without strings.

And then there was Sananda’s mom. This was her question: “Is my daughter having fun? She looks so happy right now.” I told her I thought Sananda
was
having fun (“I am!” Sananda agreed), and that she was also quite talented. “Well,” said her mother, affectionately ruffling her daughter’s hair, “of course she is. We just want her to explore and have a good time this summer. And she likes to tell stories and she loves to read.” I was almost a decade away from being a mother, but I remember thinking that this mother’s attitude about her daughter’s particular gifts was a lesson in how to mother a child (and the way I had been mothered myself). I also worried that I would fail, that I would push my child too hard.

While my parents were still staying with us, Rick and I went out for a Valentine’s Day dinner, but it was hardly romantic. We struggled with what to say to each other. We were used to talking about the baby, planning for the future, looking forward, tracking change. Gone were our plans for Ronan’s future. Gone was our hope. How could we talk about what was coming next—seizures, blindness, death—over samosas and vegetable biryani? We ate in silence and on the drive home I started to cry. The stars looked mean and bright and close in an unyielding winter sky. “It’s as if there’s another baby behind this baby, and we’ll never get to meet him.” Rick agreed this was unfair. I stopped crying and we rode home in silence. What about all the things I’d imagined that Ronan might be or become without Tay-Sachs in his way? We’d never know.

What I did know was that there would be no vocab jars for Ronan. There was nothing he needed to prove or do or become. He could stay a beautiful acorn; he didn’t need to grow into a tree or realize his potential. He disproved Aristotle’s teleological theory that potential is the key to life. No time limits for writing short stories or doing anything else. No pressure to be quicker or better or smarter than the other kids. If he wanted to roll over, great; when he could no longer do that, he could lie on his stomach and coo until that grew tiresome, and then we’d find another activity he enjoyed. He could eat avocados, touch the fabric of different pillows, my sweater, my hair (wet and dry), and read
Fishy Tales
(the best-selling book around here; it would easily win all the awards). He didn’t have to meet any milestones. He could lie on his back and sit on our laps and do nothing at all. He didn’t have to be self-reflective or worry about what was next or why life was the way it was or what his very short one was about or for. He would have his own way as a baby, his own set of “baby days.” I tried to experience these with him—without judgment or expectation, understanding that being liberated is not the same as being free. I did not make Dr. Frankenstein’s mistake and turn away.