The Still Point Of The Turning World (3 page)

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Agony is not an experience that’s easy to describe. How could I write the story of Ronan’s life? How could I create order from chaos and find underlying patterns of meaning in a situation that, from the outside, looked inviolate and incontrovertibly meaningless? I came up violently short. The narrative was empty. What could I say? Even with the image of the dragon in my mind, I felt hollowness, that familiar blackness, and the desire to crawl out of my own skin. I sat in front of the computer and typed Ronan’s name over and over again while listening to see if he was stirring in his crib. But I am a writer. I write. And just as I had written through every experience, euphoric or horrific, throughout my life, I began to document the daily happenings of my son’s short life. Once I started I didn’t—I couldn’t—stop.

Ronan was born in March 2010 and spent his first nights wrapped up like a burrito in the clear plastic crib next to my hospital bed at Cedars-Sinai Medical Center in Los Angeles. Ronan made me happy then, long before the dread associated with his progressive illness, and he made me happy every day after his terminal diagnosis with his round face and green-gold-brown-yellow eyes; his perfect toes; his fat ankles; his pointed boy-ballerina feet; his impossibly long, pale eyelashes; his sticky, sweaty hands; his long contented sighs; the soft angle of his nose; the way he made an
oh-no-this-might-be-gross
face when he tasted his first spoonful of solid food, even if it was his favorite (avocado); the duck tail of wavy hair at the back of his head that bounced into ringlets at the first touch of humidity in the air; the way he’d sit on my lap and then suddenly look at me and smile as if he’d just realized—
Ah! Here you are!—
that I’d arrived. I loved his contemplative looks, his grumpy glares, his well-timed sighs. I loved the way he held up his hand and waved his fingers at himself, marveling, as if to ask,
Are these really mine?
I loved the way his soft body floated in the therapy pool, a tiny merman, his wet curls trailing behind him like seaweed. And later, when he became more withdrawn, I loved the look of his eyes blinking in the light, although he could no longer see, and the sudden coo and wiggle as he sat next to me on the couch listening to opera, sleeping side by side with him, his forehead pressed to mine. I loved the look of his wet face in the bathtub, his feet dangling in the warm water, his soft and flawless skin. Held in this happiness, of course, was the knowledge that any smile might be the last one, and that even before his biggest period of regression he was already irretrievably and heartbreakingly lost. Tucked inside the moments of this great sadness—this feeling of being punctured, scrambling and stricken—were also moments of the brightest, most swollen and logic-shattering happiness I’ve ever experienced. One moment would be a wall of happiness so tall it could not be scaled; the next felt like falling into a pit of sadness that had no bottom. I realized you could not have one without the other, that this great capacity to love and be happy can be experienced only with this great risk of having happiness taken from you—to tremble, always, on the edge of loss.

We know that everyone we love will change and all of them will die, but it’s harder to fully accept this knowledge while holding a sick baby, especially when that baby is yours. The acceptance was a daily challenge, like attempting each day to escape from a prison even though you know your efforts will be fruitless.

I was and have been many things—a writer, a wife, a friend, a teacher, a lover, a sister, a niece, a daughter, a skeptic, a former Christian, an itinerant theologian—but since January 10, 2011, I have been one thing in particular: Ronan’s mom. The more I wrote about Ronan, the more I understood that the only way grief would not take me down completely was to greet his diagnosis head-on and make my world big, make his story known. His myth is an account of loving and letting go, it’s about art and literature and movies, about theology and philosophy and animals. It is about the joys and costs of refusing to look away, of diving into the abyss and kicking around in it, about going forward in life even though there is no sign that things will change or be solved or get better.

Akira Kurosawa once said that “to be an artist means never to avert one’s eyes.” I read this in
From Where You Dream,
Robert Olen Butler’s book about crafting fiction, on a plane from Los Angeles to Santa Fe the day before Ronan’s diagnosis, when I still cared about pursuing a life of art—things that mattered no longer in the days that followed, and then quickly began to matter to me more than they ever had before. I was reminded of Kurosawa’s words on “diagnosis day” as we discussed Ronan’s prognosis with doctors and specialists who poked and prodded and examined him and stretched a rubber band across his forehead like a mean-spirited halo in order to draw blood from a vein. “Prognosis,” a word cut from metal, from iron, a word with the sharpest edges.

On January 10, Rick and I did not know the full details of what lay ahead, only that it would be the most difficult test of our lives. There is no cure for Tay-Sachs, no arguing with biology. We understood that our son would gradually regress into a vegetative state within the span of one year, and that this slow fade would progress to his likely death before the age of three. He would slowly go blind. He would never speak or walk and he would lose control over his head and never have control over any other part of his body. We understood that we would suffer as he withdrew, as he changed, as his interaction with us diminished, but because we were his parents, we were determined to make each remaining moment of his life one touched by love.

As tragic as the situation appeared from the outside, the inside of our lives was often blissful, despite the daily very real dread about what was happening as this ridiculous disease spread across Ronan’s brain and shut down his body. In the morning we lifted Ronan from his crib and kissed him. There was joy. We laughed. We lived. I took him hiking and rubbed his fat feet in the dirt and lifted his face to the juniper-scented breeze. He went on road trips, to parties, coffee shops and restaurants. He was our companion, our child, our beloved.

3

It is the part of the journey where the staircase gets narrow and you must turn sideways to pass.

—Tony Hoagland, “LOVE”

W
hen I was growing up, there was a giant dollhouse in the lobby of the Denver Children’s Hospital. My small dollhouse at home had white walls and rickety furniture, but these rooms were elaborately decorated. The red wallpaper in the living room was striped with delicate gold. Tiny chandeliers glimmered from the ceilings. A pink canopy bed in the corner of one bedroom looked as sweet as wrapped candy, and a white bassinet sat near the window in the baby’s room. I remember thinking that the doorways were tall enough that I might actually fit inside—but the house was surrounded by glass. It was tantalizingly perfect, but impossible.

I was a frequent patient there. Because of a congenital birth defect, my left foot had been amputated when I was four; this was followed by endless X-rays, prosthetic leg fittings and consultations with my orthopedic surgeon. After these humiliating and occasionally painful appointments, I insisted that my mother leave me alone for a bit with the dollhouse. I circled it, watching my reflection in the smudged glass move over those beautifully appointed rooms. I longed to be small enough to sprawl on the shiny patterned chaise lounges in the living room with its oval mirror and polished lamps, or to sit down for dinner at the table with its silver forks and gleaming white plates. During the holidays (when I was often back in the hospital for more surgery), a fake Christmas tree glittered in the corner, garlanded with popcorn strings and sequined ornaments and with miniature wrapped presents stacked underneath. Life inside the dollhouse was the antidote to life at the hospital, infused with soft light, perfect and contained, procedure-free and comfortable.
Someday,
I thought,
I’ll live in a house like this, and everything will finally be set right.

The notion that happiness and fulfillment hinge upon radical transformation followed me throughout my life. From an early age, I had fantasies of being “healed” of my disability, a miracle I envisioned as rather more Disney than biblical. As my body levitated from the bed in a haze of glitter, my hair, spun in a French twist, would sparkle. My skin would shine. Free of my wooden leg and the need for it, ball gown spinning out around me, my perfect body would land in an adult-sized version of that dollhouse along with my adult-sized husband (attractive and successful) and slightly smaller children (brilliant and Ivy League bound). I would effortlessly serve elaborate dinner parties, be the perfect mother and write a best-selling novel every month. I would finally be at home.

I was born in Nebraska, and one morning when I was four years old my mom was out on the porch with me when a woman walking by on the street approached her and started asking questions: “What’s wrong with your baby? How come she looks that way?” I had just been fitted with my first wooden leg—a scary-looking contraption made of cloth, metal and wood, a leg right out of the Iron Age, but circa the late 1970s, in this case. (People are often shocked at or even disbelieving of the rudimentary technology of my first legs. My parents were simply offered what they were told was available, and they accepted it.) My mom told this passerby about my disability and she replied, “Well, I guess you can love her anyway, even if she only has one leg.” My mom was angry, naturally, but at this time she was not yet comfortable with being confrontational. Instead, she hauled me inside, wooden leg and all, and loved me. She never stopped.

One of the hardest parts of living with a disability is dealing with other people’s responses to it. People often find this baffling.
Don’t you wish you could just have two legs?
Yes, it would be easier, but it’s impossible, and this body is what I’ve always known. It would be nice, however, to move through the world without people assuming that when you are disabled, the devastation is constant, total, consuming and ever present. It isn’t. But if you fall too far outside culture’s ridiculously restrictive assumptions about what a “good” body looks like and does, people believe that one quick glance is enough to pass judgment on your quality of life, your prospects, perhaps even your state of mind and your basic goodness. I’ve been both pitied and admired because I wear an artificial leg, and it’s sometimes difficult to decide which is worse. Some examples: “If I had one leg, I’d never leave the house!” Really? That seems impractical. “I can’t imagine how you live.” Day by day, just like everybody else. “You are so brave and amazing.” What would make us hibernate, as people with disabilities, what would make us hide? Why this shame that grips and won’t let go? Why this idea that people with disabilities are “extraordinary” when they are only trying to live ordinary lives? I crossed continents—Africa, Asia, Europe—to try to find answers to these questions.

What I realized was that people across this country and across the world suffer from a lack of imagination when it comes to disability. Disability lacks a frame. We get no assistance from the media, literature and popular culture, where the stories are either full of pity and sadness or impossible physical feats performed by inspiring people with disabilities who run marathons or climb mountains using expensive prosthetic equipment. Most disturbing of all is a common reaction that is rarely questioned: what people view as the “tragedies” of others makes them feel better about themselves. If somebody else has it worse than you, you can walk around feeling lucky for a few minutes. In the weeks following Ronan’s diagnosis it upset me to think that Ronan and I had no purpose at all in this world other than to serve as reflections for situations other people feared.

When I was younger, I, too, played this “I’m lucky and you’re not” game. I wasn’t immune to ranking myself on an unseen ladder of luck, which in some ways, according to my skewed (but common) logic was somehow equated with goodness.

One example: I learned to ski when I was six, at Winter Park in Colorado, at a center built and staffed and funded specifically to teach kids like me to enjoy the best sport in the world (I am admittedly biased). No matter your individual physical or mental limitations, someone could teach you to successfully and safely (well, sort of) fly down a mountain at varying speeds.

Once, when I was a teenager, during a lesson with Dan, my favorite instructor, I said, “I’m so glad I’m not blind. That would be, like, so much worse than having one leg.” I don’t remember what prompted me to even think this, let alone say it out loud, but when Dan looked at me, I knew I’d said the wrong thing.

“You think?” he asked, knocking one of his poles against my single boot. “You think there’s some kind of ranking system, Rapp?” We were midway down a difficult slope, and I’d fallen pretty hard near a line of trees marking the run’s edge.

“Uh, I don’t know,” I said, embarrassed now as I hauled myself up out of the snow, but thinking,
Yeah, you butthead, there is. And I’m at the top of the ladder; I can hide my disability.
And hide it I did, in some cringe-worthy outfits (think pale blue, high-waisted parachute pants and a matching sweater). I was also thirteen, so a crisis for me might have been an inability to roll up my acid-washed jeans exactly the way my friends did, or glancing in my locker mirror to realize that my side ponytail was tilted at the “wrong” angle, or suffering in my long pants during the summer because I was afraid to be stared at in shorts. And hello? Didn’t everything have a ranking system? Every year the junior high yearbook staff handed out awards for best smile (which I
won,
dude, I wanted to say), best personal style, best laugh, et cetera. Dan was a total dweeb! What did he know?

“Do you want to see what it might be like?” he asked. “To ski blind?”

I most certainly did not. A blind skier is tethered with a rope to a skier who moves behind her or him, calling out when to turn; the blind skier has to trust the calls and move left or right when told.

“We’ll tree ski,” he announced. “It won’t be exactly the same thing but it will give you an idea. You’ll be able to see, but it won’t be easy.”

“Isn’t that, like, not allowed?” I asked. “Isn’t it, like, totally dangerous?”

“Are you going to tell someone?” I was not.

“You have to keep your wits about you,” he warned as he skied toward a gap in the trees. “And don’t second-guess; just do what I tell you.”

I’d never been very good at that. I agreed anyway.

Tree skiing was an absolutely euphoric experience that I will never repeat. There were impossibly tight turns on a steep slope, some ducking involved and sharp tree branches perilously close to my face. The shade from the trees made everything darker, icier. I could feel my heartbeat in my eyeballs. The experience of trusting someone to mark my moves for me as I hurtled down a hill at a terrifying clip was a completely counterintuitive experience. There was no sense of control. Dan would call out “left” when I thought for sure he was about to say “right,” and he cut me zero slack. He went
fast.
The experience wasn’t worse or better than skiing on one leg; it was just different. Maybe Dan was rash and irresponsible to challenge me on that day, although now I think he did me a favor by teaching me an important lesson about the value of specific experience, the value of individual bodies. It was a lesson I continued to learn as Ronan’s mom.

Disabled people are like immigrants wherever we go, routinely asked to justify the landscape of our bodies to people who’ve never been there or imagined it only in a limited way, through the disability tourism of old stories propagated in literature and movies and news stories—so the question becomes not W
here are you from originally?
but instead W
hat are you and why?

When you’ve got a visible disability or if you’re the parent of a disabled child, I quickly learned, your story is up for grabs. People lose track of their manners like coins spilling out of holey pockets, like the string of a kite slipping from a hand. Although I didn’t realize this as a child, wandering around that dollhouse in the children’s hospital lobby was about a desire to enclose myself in a compact, sleek, organized, predictable life. Sterile and clean. No chaos, no difference, no mess.

As the mother of a little boy with Tay-Sachs, quite possibly the shittiest disease of all time (as one dragon mom put it, “They never had a chance”), the question “What happened to your baby?” came right after “What happened to you?” It was enough to make me never want to leave the house. But leave it I did. I’d learned to move around in the world, even if it made people uncomfortable, and even if it made me feel vulnerable and raw, bright and strange. Ronan helped teach me a lesson I had long been resisting: this world belongs to everyone. We all have a place in it, no matter how long we live and no matter what we look like, how we move or don’t move, how we exist. What matters is that we lived.

Life is
challenging for everyone in different ways. Certainly, living with a disability and being the parent of a terminally ill child are both extraordinarily difficult in ways that are probably impossible to imagine for people who haven’t experienced them. But it is not all pain and moaning and suffering, and I learned this, too, through the years before I became a mother and then later as Ronan’s mom. People assume that you
are
your disability; that you must spend all day bemoaning your fate. Yes, that happens—but it also happens to plenty of nondisabled people. Ronan was Ronan—he was never just a sick baby—and my life as his mother was more than just managing the illness and the many difficulties it presented. The late Czech writer Václav Havel, who was imprisoned for four years of hard labor for his involvement in his country’s civil rights movement, said it perfectly in a November 1980 letter to his wife, Olga, in which he compares the loss of a limb to the loss of freedom in prison:

If you were to spend several years brooding constantly over whom you might be with, where you might be, what you might be doing, eating, etc., if you were free, it would probably drive you mad . . . you focus on values that are within reach: a moment’s peace and quiet, time to read something good, a good night’s sleep, steering clear of some pointless annoyance, keeping your things clean and neat, satisfaction with your work, etc. While the comparison is not exact (I won’t be here for life, I hope), in some ways it’s like the condition of the man who loses a leg: as time goes by, he will focus more and more on the best way to walk painlessly with an artificial limb, and less and less on what he might have done if he still had both legs. Yet “two-leggedness” is still a presence in his life, though in a form somewhat different from what it would be in people who actually have two legs. From a fact he takes for granted, it becomes something at once more abstract and more on his mind, the measure of everything he does—but chiefly the measure of his effort to live with an artificial leg.

The most interesting and perhaps illuminating aspect of Havel’s insights as applied to Ronan’s situation was that Ronan never had to measure his effort at anything, or take anything for granted, or view himself from the outside in this philosophical way. He never circled a place or the idea of a place, or wondered about his role in it, or whether or not he belonged. He was mercifully free of this thinking; it had, however, helped me to make sense of my own experience of being his mother. For Ronan there was no sense to be made, no change to seek out, no potential to actualize. His life was a collection of singular, unrepeatable moments that were not analyzed, remembered or regretted. What a relief for him and for me.

“I could never do what you do.” “I don’t know how you cope!” “He is the definition of heartbreak.” These are, at their base, simpleminded, misguided and, of course, quite rude remarks, not to mention shortsighted and stupid. Nobody is immune to disease or sickness or any other catastrophic event, and we are all just a disease, a decade, an accident away from disability. So we’re afraid. Confronted suddenly with an experience interpreted as tragic and world-ending, people feel helpless and stumble over their words. The death of a baby seems to go against nature, against the advertisements on television about the miracle of birth and the unadulterated joys of parenting, against our hopeful delusion that being good people might keep chaos at bay. But chaos finds everyone, or as the philosopher Ziusudra mourned in 2700 BCE: “Fate is a wet bank, my friends. Sooner or later it will make you slip.”