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"How?" I cried as my husband lifted and carried me into the hospital bathroom, stopping to hoist my dead weight with his knee, my inert body rolling, unpredictable and clumsy as melons in a sack. Arms dangled helplessly from my sides, someone else's arms. For a moment, midhoist, someone else's fingertips grazed the linoleum floor. "How can you bear to see me this way?" I asked as Will cradled and wiped and washed my paralyzed being and hauled me back to the bed. "How can you stand it?"
He laid a cool hand on my forehead, hot from the rage of corticosteroids that were rushing through my bloodstream in an attempt to bring my engorged spinal cord down to functioning dimension. "Ellen," he answered. I closed my eyes in the dark and leaned against the sound of my own name.
"I was paralyzed when I met you," he said, placing each word faceup, like a card, "and you made me whole. You showed me that it was all right to be happy. So if I have to do this every day for the rest of my life, I'll do it gladly, because you made me see that I could."
I was paralyzed when I met you.
When I met you.
But I get ahead of myself. Begin at the middle.
By all accounts, it was a fine marriage. Not, perhaps, a googoo-gaga, chase-me sort of marriage, but a fine one. Over 12 years, the number of long, moist embraces in corners and ravaged, yearning looks at breakfast certainly waned, replaced instead with trips to Whole Foods and updates on work and sharp kicks under the table when Will forgot he wasn't supposed to mention the time the hostess, a fashion editor, had suffered a nervous breakdown and shown up to an important editorial meeting in her pajamas and slippers.
It was fine, though. We were fine. It is possible that we each sensed, in ways both acute and distant, that there might be something more out there, something thrilling and transforming. But the journey between out there and in here is formidable, and it can be difficult to navigate one's way between those two points. So we persevered, maybe without as much yearning and embracing and moistness, but we persevered with perseverance, stolid and forward facing.
How?
How can you stand it?
Begin closer to the beginning.
We were an unlikely couple and the likeliest couple on earth. William Betts Dana was a Connecticut-born Yankee with all the rules that this implies; Ellen Jean Tien was an overachieving daughter of Chinese immigrants, with all the breaking of rules that this entails. Will Dana struggled to communicate; Ellen Tien struggled not to. Will analyzed; Ellen intuited. He let things go; I clasped them close.
When he stumbled over words trying to convey how he felt, I laughed heartlessly at him and told him to stop communicating and intuiting—to get off my turf—and to just let go.
Although we had known of each other in the way that anyone who pays attention to mastheads or bylines feels a kinship to a name on a line, we officially met on a bitter winter night in 1991, at a party in a SoHo loft. He was rumpled and charmingly tongue-tied but managed to squeak out an invitation for me to visit him in Chicago, where he had recently moved. On a whim, out of a feeling of listlessness or destiny or both, I flew there and visited him. I visited him again. Then again.
On one visit, in the bargello of demicoastal flights that would embody our courtship, we were draped on a battered brown sofa when I noticed the time on a digital clock: 11:11. "Quick, make a wish," I prompted.
We wished.
At 11:12, I asked him, "What did you wish?"
"That I could fly," he said, shrugging when a sudden laugh pricked the corners of my mouth. "It's the wish I always used to make when I was a kid. In a pinch, the words popped into my head: I wish I could fly."
This struck me as so pure and so good, I married him.
You showed me that it was all right to be happy.
I married him, not for his looks or his money although he had a tolerable supply of both. Nor did I marry him for his devotion or tenderness since I was neither tender nor devoted and was unable to accept what I couldn't give back. I married him for his brains. Not for his brain, which was an altogether too complicated and tortuous arrangement of rooms with bad lighting. No, for his brains—his braininess, his kinetic body of knowledge, his vigorous intellect, his undisputable dominion over facts and theories and givens.
"Ask Will," my girlfriends would say when, in a conversation, we reached a place of puzzlement. "He knows everything."
If we were not soul mates, we were kindred spirits. We shared the religion of language, a belief in words and the strength of their composition. He was an editor and I was a writer and we became each other's eyes. He read every piece I wrote. His were the eyes I turned to first; his were the brains I relied upon.
You made me whole.
More than that, he had a greater faith in me than anyone had ever mustered—greater even than my parents, deeper even than my son. He maintained an unflagging confidence in my abilities, real or imagined: Whenever a discussion arose that involved any type of high-functioning career, he invariably gestured toward me and enthused.
"You would make the greatest Supreme Court judge."
"You would be the best medical examiner ever."
"They should hire you to run The New Yorker."
Once, after he had declared that I would make an exemplary prime minister, I pointed out that he always said that I would be the best such and such and, frankly, it seemed a bit indiscriminate. "Untrue," he protested. "I've never said you would make the best underwater tunnel digger."
That's where he was mistaken. Before we met, I was one of the greatest sandhogs of our time.
But if the Man Who Knew Everything believed that I could do anything, then maybe I would have to believe it, too.
You made me see that I could.
We bought an apartment on 22nd Street.
We adopted a dog who looked like a fox.
We had a son.
We used to joke that the arc of our life would move from "Did the dog poop?" to "Did the baby poop?" to "Did you poop?" and then—finished. Done. A complete life together, charted in three easy-to-answer questions.
Except that somewhere between the baby pooping and me pooping—June 17, 2002, to be precise—I got cancer.
Now I grant you, when you're already 1,146 words in, cancer can be rather a bomb to drop on a story, especially when it serves only as more exposition and is really somewhat beside the point. Allow me to detonate: I was diagnosed with a breast cancer; it was small and intense and manageable.
Of course, when I say manageable, I mean by me. At the ping of diagnosis, Will's busy brains etiolated into vapor. It wasn't that he couldn't cope—it was that he wouldn't. My girlfriends went with me to doctor consultations; my best friend, Jacquie, accompanied me to my surgery. My surgeon, Dr. Nowak, assumed that I was a single mother. I am pretty sure that my oncologist, Dr. Tepler, thought I was a lesbian. The former had referred me to the latter, and I pictured the two physicians, running into one another at breast cancer conferences, exchanging small talk.
"By the way, I've started treating that patient of yours, Ellen Tien."
"Oh, right—the single lesbian mother?"
When my radiation treatments began—8 a.m. appointments at Weill Cornell's Stich Radiation Center—Will officially took his bolt of denial to the tailor and had it made into a three-piece suit.
"Look at you, all dressed and ready to go," he would say gaily on a Monday morning (he is a morning person in the worst way). "Where are you headed?"
Radiation, I would say.
Tuesday: "Where are you off to on such a nice morning?"
Radiation, I would answer darkly.
Wednesday: "What are you-?"
Radiation!
It was the same for six weeks.
If I have to do this every day for the rest of my life.
But if there is a gist to this part of the story—and I am a terrific fan of the gist—it is that in a marriage, what seems like a brute transgression on the outside can transliterate to merely a workaday blemish on the inside. The gander's indolence or neglect might appall the flock but may barely register with the goose.
We had an ordinary marriage; cancer made it extra ordinary.
The blizzard passes; the ground is still white, only more so.
If I couldn't quite commit to forgiving Will for his absenteeism, I could, in a specialized way, get it—or at least I would have to say I did unless I was willing to play the fool who stayed with the fool who played her for a fool. Getting it was the toothpick that could save the card house, the international symbol for truce. How many times had I oppugned Will for a perceived disregard, a forgotten quart of milk, a veiled insult from a member of his family, only to be neutralized: Okay. Okay. I get it.
So the business of living went on as usual, although now slightly hobbled by the realization that life was no longer a simple matter of three poop questions. But since the evolution of a relationship is less about forgiveness and scatology and more about the accumulation of real estate, we forged onward and bought a weekend house in the jungles of Connecticut. For the next year, we excitedly huddled together in the glow of a collective project, connected by the inherent promise found in paint chips and carpet swatches and fixtures.
It was Memorial Day weekend 2004, our first weekend in the new house, and we were in an Ace Hardware store when the magma burst loose and Pompeii was buried.
I was paralyzed when I met you.
I was paralyzed.
A crushing pain blossomed cruelly in my chest and my back—I staggered back between the spools of chain-link and the bags of peat moss and knew instantly that something was wrong. We made a dash for the car and drove to a hospital in nearby Torrington. I remember Will tersely counting down the miles.
Only seven more miles to go.
Only six more miles to go.
I doubled over in my seat, negotiating for air. I started to lose feeling in my fingers and toes. At one point, I turned and looked in the backseat and saw my son—his chubby 6-year-old hands clenched in fear, tears silently streaming down his face—mumbling to himself, "Don't make a sound. Don't get in the way. Don't make a sound. Don't get in the way."
I think that was the worst part of all.
Only four more miles to go.
We arrived at the hospital in Torrington, the morphine was plugged in, the bottom dropped out of reality, and I stopped being able to chronicle the events in any organized fashion. At some juncture, the chief neurologist walked in the room and declared herself "completely unqualified to diagnose the problem," which was reassuring. There was talk of airlifting me back to New York but, concerned that the paralysis would spread to my lungs and they would not be able to intubate me midair, an ambulance was deemed preferable. Will's cousin Kate picked up our son so Will could ride with me.
By the time we were racing past Westchester, I was paralyzed from the shoulders down.
When we pulled into the ambulance entrance of Weill Cornell Medical Center on 70th Street, I remember Will musing, "Wow—we made really good time."
The doctors—these being rather more qualified than the ones in Torrington—swiftly arrived at a diagnosis: acute transverse myelitis, a rare idiopathic condition in which a body's immune system attacks the myelin sheath around its own spinal cord. It was unrelated to the cancer, a second fluke, a brilliant stroke of unluck.
I was assigned the top myelitis specialist in the city, Dr. Apatoff, a wiry man in a bow tie with a hyperintelligent face and the bedside manner of a schnauzer.
There were high-dose IV steroids and MRIs and spinal taps and more steroids.
The IV tree grew thicker and thicker with bags. There were drugs to calm the drugs that inflamed and other drugs to calm the calming drugs and then new drugs to counteract the over-calmingness of the drugs before them. The narcotics dogs chased their tails up and down my veins until my mind was burned into the blue-white burst of a flashbulb, all heat and muffled explosion and floating spots.
I remember weakly joking to Will, "What next? Thrush?"
The next day, I got thrush.
A few days after that, steroid-induced edema blew me up like a human blister. In 72 hours, I gained 40 pounds of water weight; as the fluid rushed into my face, my eyelid and the right side of my nose—weakened by a host of secondary infections—collapsed in a heap somewhere above my mouth.
How can you bear to see me like this?
I was no longer presentable or sane, yet a throng of visitors persisted in making my room a ruthless party, the strange manic gaiety of which pushed me deeper into confusion.
Food and flowers formed a slag heap along the windows.
I was afraid to sleep alone in the room.
My stomach, bruised from daily multiple injections, turned the deep, mottled maroon of a tortoise cowry.
My friend Elizabeth baked an enormous pink buttercream cake.
I snapped at Will in front of his mother, and the next day when she called—a nurse propped the phone on a pillow next to my ear—the whole room could hear her anxiously wailing, "You must be nicer to Willie! You must be nicer to Willie!"
Sheesh, someone in the room said. Pick your priorities.
Everyone laughed.
My son went to a carnival, and I worried that he might horse around during a ride and lean too far one way and his body would be crushed between the metal cars.
Jacquie brought me a Porthault bathrobe and I wept because I bled on it.
I asked Will repeatedly if the dog missed me.
Pick your priorities.
I wish I could fly.
Time stacked atop time. I was moved out of the ICU, first into the neurological ward and then upstairs to a grimly cheerful physical rehab unit called Baker 17 that had a shiny Pergo wood laminate floor, peevish nurses, and orderlies who flatly refused to change sheets.
Two weeks later, Will and I came home with a wheelchair and walker.
Three months later, I could walk on my own but had no sensation down the left side of my body.
Nine months later, Will drove me to the office of Dr. Daniel Baker, a plastic surgeon, who painstakingly began to give me back my self, reconstructing my face in a series of surgeries, each four months apart. After the first surgery, in which my collapsed face was fattened with cartilage grafts, my nose foreshortened and upturned, I looked like a pig. After the second surgery, I looked like exactly half a pig. This was all according to plan.
Next month I will schedule a third surgery, after which I will, with luck, resemble not a barnyard animal at all.
At the one-year mark, the function in my hands had improved, but I had no use of my thumbs or my right index finger.
I still can't tie a shoe or write legibly or play the piano.
End at the beginning.
"How?" I asked Will as he bathed and dressed and fed me for weeks upon weeks, matter-of-factly and without complaint, as if this had always been the arrangement.
I was paralyzed when I met you.
"How can you bear to see me this way?" I asked him as he laid ice packs across the stitches around my nose; cleaned the brittle, bloody lacquer pooled behind my ears, which had been pillaged for cartilage; tried—oh, how he tried in his clumsy, ignorant, manlike way!—to help me brush my hair or fasten jewelry or even put on makeup in a grotesquely comic attempt to simulate a regular human facade.
You made me whole.
For the better part of a year, I declined all but the most obligatory social events. Subjecting my distorted, crumpled features and bloated girth to public gaze was too awful to be borne: the startled expressions, the quick aversion of eyes, the way that people I had known for years no longer recognized me.
He never averted his eyes.
You showed me that it was all right to be happy.
"How can you stand it?" I asked him, when he came home from work at night, only to have to tackle an additional mountain of accrued tasks. There was mail to open, books to put away, printers to fill, food to warm, buttons to unbutton, presents to wrap. I once relied on his eyes, his brains. Now I needed his hands, too.
If I have to do this every day for the rest of my life.
He started bringing me scissors—sewing shears, meat scissors, paper cutters, clippers with specially designed handles, spring-loaded cutters—until I found a pair that I could operate. He bought me fat magic markers that I could grasp in my fist and a buttonhook. Every morning he unscrewed bottles of water, de-foiled cups of yogurt, opened cartons of milk, and then closed them up and put them back in the refrigerator so I could have access to them later. All this he did without fanfare or comment. All this he did so I wouldn't always have to feel stranded.
You made me see that I could.
Begin at the end.
This is not a story about how crisis can rejuvenate love or whisk us to new heights or strengthen and improve a relationship. Sometimes it does and sometimes it doesn't, but more often than not it eventually just blends in like paint, stroked smoother and longer and wider, until it disappears into the plain—remembered but not perceived. The landscape reverts to sameness. In a society that exalts the special and the different, do we dare to posit that sameness may be our salvation?
There is a fortitude in something that has always stood.
Marriage is sameness. It is a contraption, at times creakier than others, with a discrete set of ropes and pulleys that two partners pass back and forth between each other until they can no longer. It is a fabric with a fixed set of threads weaving in and out of the patterns, showing up here, then showing up there, again. The fibers weave a sameness, the very sameness that impels some people to divorce, others to mate for life.
I will never make a complete recovery. This is a hard sentence to say, an even harder sentence to write. But this is not a story about me. This is the story of a marriage, a marriage that granted, in every state of change, sameness. A marriage that, when people asked, "How are things?" allowed me to answer, "The same."
By all accounts, it was a fine marriage. It saw two big bumps but it has seen even more paved road. And so Will and I continue to pass the same ropes back and forth, to follow the same finite set of threads as they disappear and return.
It is a fine marriage. We are fine. It is possible that we once sensed, in ways both acute and distant, that there might be something more out there, something thrilling and transforming, but now we know that we were wrong.
From the February 2006 issue of
O, The Oprah Magazine.
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Published 09/01/2008
