The second summer we knew each other, we drove cross-country. Somewhere in the middle of Montana, we hit a thunderstorm. I told Bruce how my sister and I used to run around our backyard naked in the rain. How we loved the feeling of slickness, of intrusion, the warm rain alive on our skin. Bruce turned onto a narrow dirt road and stopped the car. He got out, walked into a little stretch of woods, and began to strip. His shoulders, always beautiful to me, emerged round and smooth and shiny with rain. Rain glinted in his beard and the curly dark hair on his chest and belly. When all his clothes lay on the pine needles around his bare feet, he stood and looked at me gravely.
What could I do but get out of the car and take off my own? What could we do but make love?
I put my elbows on my knees and let my forehead sink onto my palms. I’m tired. Not just tired—weary. My husband’s catheter went AWOL at one in the morning, and we’ve spent the rest of the night in the ER. (How many nights does that make, now? How many hours?) Noise and cold and too-bright lights and too-bright student doctors. Repeating Bruce’s history, over and over. Concussion; stitches; bruising; subdural hematoma; second concussion; hairline fracture; three different kinds of pneumonia. My husband in pain, and nothing I can do about it.
I must have slept, because suddenly Bruce’s doctor—we call him The Lion, because that’s what his name means in Russian—is standing across the gurney with Bruce’s hand between both of his. Bruce’s eyes sweep over him with fevery incomprehension and then seek out my face. I try to smile.
“Go home, Ann,” The Lion says, his Russian accent hollowing out the words. “Rest,” he says. They’ve replaced Bruce’s catheter, but in the process they discovered another urinary tract infection, and possible pneumonia. He’s been admitted.
I kiss Bruce—his lips are alarmingly hot—and squeeze his toes in farewell, the way I always do.
By the time I leave, a cautious October sun reddens the sky above the parking lot, where the cold falls like a blessing on my hospital-hot face. At home I make coffee, then call the university in Sweden to tell them not to meet my plane tomorrow—the lecture and readings will have to be canceled. I call our daughter, Sarah, who is just getting her boys up for breakfast. “Don’t worry!” we tell each other, in unison.
Then, though it’s 5:30 a.m. in Chicago, I call my cousin Janet. When I hear her sleepy hello, I burst into tears.
In the days that follow, the house feels very empty. I should be glad of the time and peace, to work. I’m behind with writing deadlines, and we need the money because of the lost lecture fee from the Swedes. But I miss Bruce. I find myself with one ear out, listening for the sounds of him: the slap of the seat coming down on the stairlift, the hum of the motor as it glides down each flight, the thump that means he’s made it safely into his wheelchair.
Friends seem to think of multiple sclerosis as something terrible that happened, once: a plane fell out of the sky onto our house. No. MS is something that goes on happening—growing, changing, worsening—measurable not in weeks, months, or even years, but in decades. Bruce and I have christened it the Black Balloon. To anyone who sees me outside the house, I seem to be in their world, the world of the well. Actually, I am inside the Black Balloon with Bruce.
In the bathroom, say, assembling the paraphernalia for his shot. Or kneeling beside his wheelchair, breathing in his familiar smell: baby powder, urine, and something less definable—the remote, forest odor of decay.
Bedtime is when I feel his absence most. I miss things you’d think would be unmissable. The weight of him, wheelchair to grab bars to commode to bed, thudding onto my shoulders and traveling down my spine; the separate sigh from each of us when at last he lies, more or less straight, in the bed; the cool gust from the down quilt as it settles over him; the snap of the bedside light, extinguished.
He loved my midriff. That was the word he used: midriff. It became a special word between the two of us, a courtly, Victorian code word for desire. He liked me to lie on top of the bedspread with my hair spread out around my head like (he said) gold wire and my back arched so that he could trace my ribs with his warm fingers.
The Lion calls. Bruce has been moved to Intensive Care. Earlier this afternoon he stopped breathing, completely. They had to resuscitate him. He does have pneumonia—aspiration pneumonia, a bad one. They need my permission to operate, to insert a feeding tube directly into his stomach so that he can’t aspirate minute particles into his lungs anymore.
“He won’t eat or drink at all?” I swallow. “Ever?”
“No,” he says. Emotion makes his accent stronger. “I am sorry, but not.”
Bruce lies at a slant under a stiff sheet that leaves his feet bare. Corrugated plastic tubing protrudes from his mouth. Folding my arms for warmth—why is the ICU always so cold?—I stand listening to the rhythmic suck and sigh of the ventilator.
After a few minutes The Lion appears in the doorway and beckons to me. I pull the sheet over Bruce’s feet, which, as my hand brushes them, feel like stone. Then I follow The Lion down the hall to the Intensive Care waiting room. We settle into slippery vinyl chairs between two family groups—one speaking fast, twangy Chinese; the other chattering in Spanish.
He clears his throat. It’s going to be The Conversation, again.
Quickly I head him off. “I’ve signed the permission form. Can someone here show me what to do? How the feeding tube works? For when he comes home.”
A pause. Then The Lion segues into the familiar litany.
“The G-tube—it is tricky. More tricky than the catheter. Things go wrong.”
Bruce already refers to himself as Ports of Call, because of all the “ports”—permanent holes in his flesh—that admit various kinds of plastic tubing into his body. One in his groin, one in the back of his hand, one in the crook of his elbow. And now there will be one in his abdomen. His midriff.
“Also”—The Lion pursues his theme—“he needs a wheelchair all the time now. This he does not accept. Next time he decides he can walk, and he falls, he could break his pelvis.”
“Bruce needs a blanket,” I say. “A couple of blankets. It’s cold in his room.”
The Lion’s dark eyes shine with sadness. “I wish I could offer you more,” he says.
“You have lucky eyes and a high heart.”
The first thing Bruce ever said to me, that June night 25 years ago. We were both academics, summer fellows at the Huntington Library in California, an impossibly beautiful place. The librarian arranged for him to give me a ride to the annual Director’s Party.
Tall; intent brown eyes under wayward eyebrows; curly, Old Testament beard. We introduced ourselves, shook hands. Behind us, in the Faculty Club’s lantern-lit garden, a wedding reception was taking place. The orchestra swung into “String of Pearls.”
Bruce was still holding my hand. “Dance with me.”
“But—we’re not invited.”
“Dance with me.”
The evening air is full of unshed rain. I must be driving more slowly than I realize: headlights loom suddenly behind me, slew sideways, shoot past, loom again. Low, womanly hills give way to the clustered lights of the city.
At the hospital Bruce is being transferred from wheelchair to bed. From the doorway I watch the canvas sling that holds his big fetus-shaped body travel slowly through the air and lower him onto ironed white sheets. After the nurse—a dreadlocked young black man—straightens his legs and props him up on the pillows, Bruce gives me an evil smile. Too late, I realize I shouldn’t have let him see me see him.
“Visiting the bedridden?” he says. “How sweet.”
If you don’t stand up to him, in these moods, he gets worse. “Sarcasm is the lowest form of irony,” I say.
Twenty years ago, when the symptoms started—four years after we married, five years before we found out his diagnosis—he began to change. His wry humor turned mean. There was the time he spent a whole evening mocking our old friend Hans, who was going deaf, by making him repeat everything. There was the time he threw his cane at the brand-new visiting nurse who fumbled his IV. And there’s the way he was—the way he is—with me. Because I take care of him, I’m implicated in his illness.
“I can leave, if you’d rather,” I say.
The nurse busies himself picking up things off the floor, where Bruce has apparently thrown them—the moistened sponge-on-a-stick that he sucks now because he can’t drink water, several crumpled tissues, the remote for the TV. He’s not really like this, I want to say to the dreadlocked young man. I want to tell him about my Other Husband. The one who couldn’t wait to kiss me when he came in the door every evening; the one who sat up with our daughter when she had a bad dream; the one who—
“So many flowers, you’d think I was dead,” Bruce says.
It’s true: on the windowsill are two enormous bouquets whose cards say, “Much love, Mom,” and “Your loving bother.” In these periodic crises, Bruce’s stepmother and brother generally opt for phone calls or FTD.
Bruce, watching me read the cards, says, “‘Bother’ is right.” And we both start to laugh.
We’d been waiting a week for the results of the MRI. It was a hot, somber, dark-skied afternoon. Bruce took my hand and led me upstairs. We sat, not quite touching, on the edge of our bed while he told me.
Chronic progressive multiple sclerosis. My first reaction was relief. There was a cause, after all, for the aching joints, the falling, the swift changes in mood. And the cause wasn’t fatal.
I put my arms around him. He kissed me and kissed me, his mouth on my eyes and nose and chin, his beard scratching my cheeks, as if he would eat the tears from them.
“We won’t let this affect our lives,” he said. And in my innocence—my utter, enviable ignorance of MS and all it means—I nodded.
Chronic = always.
Progressive = worse and worse.
Multiple = many (all up and down the spinal cord).
Sclerosis = hardening (as in hearts).
My cousin Janet flies to Providence from Chicago for a long weekend. We sit, bundled in sweaters, with quilts over our knees, in my dying garden. The late October sun polishes Janet’s dark hair to a crow’s-wing shine.
“Bottom line,” Janet says, “he’s not safe. What’s your plan?”
“I can take care of him,” I say.
But Janet knows about the nurses I’ve hired to stay in the house when I’ve had to travel, fired by Bruce as soon as my plane took off; about the neighbors I’ve asked to look in on him, driven away by his angry outbursts; about the MedicAlert medallion that he throws in the wastebasket.
“You can’t be in the house 24-7,” Janet says. “His brain is blue cheese. One of these days—when he thinks, ‘What am I doing in a f---ing wheelchair?’—he’ll stand up and take off across the living room and break a hip. Then where’ll you be? Where’ll he be?”
I can’t deny that it’s a relief, now, to drive homeward each evening with Bruce in safe hands. Not to pause, key in the lock, for that breath-held moment: What will I find?
But to make that relief permanent? My eyes move over the leaf-strewn garden, the yellowed stalks of what used to be snapdragons, the tall skeletons of hollyhocks and sunflowers.
Janet stands up, sloughing leaves off her lap. “Who are you hanging on to him for, sweetie? Him—or you?”
As I enter Bruce’s room at Tockwotton Home, I kiss him, the familiar tickle of his beard and mustache like a separate wordless greeting. Very slowly he reaches up and lays his left hand—his good hand—along the side of my face. I settle into the chair beside him. “What’s new?”
He smiles. “New York. New…Jersey.”
“New Mex…ico,” we say, in unison.
What can be new, when two people see each other every day? We have our usual lopsided conversation, me recounting cute things our grandsons have said or done; describing what happened in class. Bruce doesn’t always follow what I’m saying, but it doesn’t matter. We like sitting side by side, striped with sunlight falling through the blinds.
I found Tockwotton by following Janet’s instructions. Look for nonprofit homes, she said—the staff are better paid and therefore happier. Look for homes that have been around a long time. Small ones. Spend a morning in each place, just hang out. Use your eyes (how do the staff treat patients?), use your ears (how do they talk to them?), use your nose (is the place clean?). Make sure that if your savings are used up and Bruce has to go on Medicaid, they’ll keep him.
Now, two years after I found the place, Bruce is still in the same sunny room with its view of Providence harbor, surrounded by his favorite prints and paintings, bookshelves full of his favorite videos, plants, photographs.
We sit in silence for a while. Then Bruce says, “There…is…something.”
“Something…new.” He gestures toward the pile of papers beside his computer. On top of the stack is a painting, on a sheet of stiff, heavy paper, composed of thousands of closely spaced stabs of color. Blues and mauves and greens: forested mountain slopes converge and greet one another beneath a cloud-kissed sky. Looking at it, I am filled with slow-blooming peace.
“A present?” I say, looking up. He’s a favorite with the staff—men are scarce in nursing homes, and so are patients who can carry on a conversation—and they often give him things.
He smiles his old smile, the one that spreads upward till his eyes crinkle at the corners. He pauses, for dramatic effect. Then he says, “Yes. For…you.”
“For me?” Then I see. “You did this?”
An art therapist came and gave a class, I find out later. Each of the patients chose a page from a calendar and copied it. Bruce, who’d never painted a picture in his life, painted this one with his left hand, brushstroke by brushstroke, over eight weeks. He’d sworn the staff to secrecy.
“The acci…dental…artist,” he says.
“It’s beautiful,” I say. “Thank you, sweetie.”
All that labor, hour after slow, patient hour. But it isn’t the labor he wants me to admire; it’s the painting. Bruce is sometimes mean or sarcastic with the nurses, but never, now, with me. Because I’m no longer his caregiver, I’m no longer implicated in his illness. His resentment of his body, his despair, his shame—these no longer extend to me. Our bodies don’t connect, so our hearts can. We elude, for the moment at least, the bleakest premise of chronic illness: that one’s body is one’s fate.
It’s a different marriage from the one we started with. A marriage I would have refused 22 years before, in the California garden where we first met. A marriage I could not have hoped for, or even imagined, in the dark days two years earlier. I think of it as my Other Marriage. And as I kiss Bruce goodbye and squeeze his toes and leave, I am thankful that we found it in time.
Ann Harleman is the author of Happiness, Bitter Lake, Thoreau’s Laundry: Stories, and the forthcoming The Year She Disappeared. This essay is adapted from a chapter in the new anthology An Uncertain Inheritance: Writers on Caring for Family (Morrow, 2007).