On the day of Rich's surgery, his daughter, Sally, and I are there at six thirty in the morning to accompany him to the operating room. We walk beside the stretcher and try to calm him, but he is disoriented and very agitated, until the anesthesiologist gives him an injection of Versed. "Can we get some of that to go?" asks Sally. When they wheel him into the operating theater we go to have breakfast in the hospital cafeteria. Sally has two boiled eggs, Cream of Wheat, corned beef hash, and coffee; she's a nurse and she knows what she's doing, it's going to be a long day. I have a banana. The waiting room is a large place with high ceilings, and through a sliver of window I can see the brightly colored clothes of pint-sized campers out on Fifth Avenue with their nannies, the green of Central Park behind them. Outside the weather is cool and clear, and Sally and I settle down for the long wait. The surgery is expected to take all day. I am not worried about Rich, but my dog has gotten sick, his ears were hot and he didn't eat, his stool was bloody. My sister Judy has agreed to take him to the vet. Suddenly panicky, I begin calling my sister every fifteen minutes. Patiently her son tells me his mother is still at the vet. I can't think straight, what would I do without Harry? Finally in my desperation I call the vet himself. It turns out Harry has colitis and all I need to do is feed him lots of rice and give him medicine for five days. This is such a huge relief that I wonder for a second why I was so worried and then it hits me that I comfort Rich, but Harry comforts me.
At six o'clock we find out that Rich's surgery has gone well. We can go up and see him in the recovery room, the SICU. He is asleep, bandages around his head, beneath them are the staples that cross his head from ear to ear. The doctors have done what they set out to do. There being no bone left unsplintered in his forehead (shattered like an eggshell, they tell us), they have built him a new one, made of titanium. They have rebuilt the floor of his brain, they have removed the dead tissue. The brain fluid that had been building up is relieved. His right frontal lobe is gone, and the left damaged. They tell us again that there will be differences in Rich's personality, only time will tell the nature of the changes. I have never processed this information. Changes? Just give him back to me and everything will be all right. We begin the round of phone calls to friends and family.
But in the days immediately following the surgery Rich enters the stage known as "Inappropriate Behavior." This is euphemistic for the anger and irrationality that is part of the process of recovery. Rich is angry and confused. He doesn't mention going home; there is no destination except "out of here." I betray him all the time, he says, by not saving him. He thought he could trust me, he thought we loved each other, but now our love seems very thin to him, he says. Roughly he pushes my hand away as I reach for his. My feelings are hurt, I can't help it, although I try to reason them away. Sitting with him hour after hour, his face glowering, makes me think of the stories I've heard of people who after traumatic brain injury bore no resemblance to their former selves. I am terrified that a change like this will undo me. This man is not the man I married. None of this is his doing, he didn't choose this, but neither did I.
One day I look out the hospital window high above Central Park, and I feel as if there's a tightrope connecting Rich's hospital room to our apartment, and all I do is walk back and forth on it, the city far below. I can almost see it shivering like a high-tension wire above the trees. This is when I learn that I have to take care of myself, even if my leaving makes him angry, or worse, sad. I need to eat and sleep. I need to do something mindless, go to a movie, fritter away an afternoon. And I realize something even more startling: I can't make everything all right. It's his body that is hurt, not mine. I can't fix it, I can't make it never have happened.
Rich still refuses food and medicine, everything has been poisoned. "Why are you so fatuous?" he asks angrily as I try to say something cheery about the potassium in a banana. Remarks like this sting me, especially because I sound like Pollyanna even to myself. When we wheel him down a hospital hall for a CAT scan, he says, "You always know you're in for it when you're going down a long hall with nobody else in it."
Afterward he tells me, "I felt I was at a casual execution." When he's lost almost thirty pounds they put a peg in his stomach. Through this tube, which resembles a monkey's tail as it curls out from under the covers to the IV pole, they give him nourishment and medicine. The shape of the tube may be what gives rise to Rich's belief that there is literally a monkey in the bed. "There's no monkey," I tell him. "Don't be so sure," he says, lifting the sheet to peer beneath it.
How do I separate the old Rich from this new Rich, what allowances do I make for his injury, when do I draw the line? How do I draw the line? The nurses say this is just a stage but I am not comforted. I miss my old husband. I miss the old me. When I run across something from before the accident, a snapshot of Rich smiling his beautiful smile, I feel such staggering loss. What happened? Where did my husband go? I clean the closet and find a tiny portable fan Rich bought me for trips because I can't sleep without white noise, and it makes me cry.
"I don't know who I am," Rich says over and over. "There are too many thoughts inside my head. I am not myself." Yesterday he said, "Pretend you are walking up the street with your friend. You are looking in windows. But right behind you is a man with a huge roller filled with white paint and he is painting over everywhere you've been, erasing everything. He erases your friend. You don't even remember his name." The image makes me shiver, but he seems exultant in his description. There are days when he is grounded in the here and now and days when his brain is boiling over with confusion. When he is angry I go home after only a short visit. Staying does neither of us any good. Where do I put these bad days? Part of me is still hanging on to the couple we were. Where do I put my anger? What right have I to be angry? My husband is hurt. Part of him is destroyed. I don't even feel my anger most of the time, but it's there, and I only acknowledge it when I find myself doing something self-destructive, going for a day or two without eating, drinking too much coffee, allowing myself to get lonely, tired.
"Good things happen slowly," said a doctor in the ICU months ago, "and bad things happen fast." Those were comforting words, and they comfort me today. Recovery is a long, slow process. There are good days and bad days for both of us. I try to find an even keel but still I am upset on the bad days and hopeful on the good. Uncertainty is the hardest part. There is no prognosis, no one can tell me how much better Rich will get and how long it might take. The day before my birthday Rich imagines that we've gone to Coney Island and he bought me a shell necklace. This is my present, as real for me as it was for him. He held my hand. That was yesterday, a good day, but filled with sadness. The season is changing, I take Harry to the park and watch the leaves turning and falling, there is beauty overhead and underfoot. There is something else I don't know yet, something I'm straining to feel, as subtle as the change in humidity or temperature, or the shift in light as summer becomes fall, the most beautiful season, with its gift of beauty in loss, and the promise of something more to come.
Home
I am on my way to Pago Pago but stop first in Rosita's for a plate of rice and beans and an egg over easy, a cup of café con leche. The toast here is good and I order some of that too. The restaurant is fragrant with bay leaf and coffee, the simple tables crowded with graduate students, young families, cabdrivers, a mix of Spanish and English in the air. It is a reassuring atmosphere, one of my homes away from home. I am on my way to Pago Pago, where my husband of thirteen years woke up this morning, at the start of a Sunday, getting ready to take part in the gorilla hunt. He is alarmed when I tell him I am coming to visit, it is too long a trip, it is dangerous. "You will need amulets," he tells me urgently. "You will need to talk to witch doctors." I tell him calmly I will be there in two hours. "How will you find me?" he asks. "I am taking the train," I tell him. My husband has been gone for almost a year.
Always when I ride out to Manhasset the train passes through Flushing, where my fat
her grew up. I remember a clapboard house, hydrangea bushes. I remember his father's office to the left when you came in, a long leather couch, glass cases of medical instruments. I remember a mysterious interior, a room to the right, carpeting with a pattern of faded flowers, a carpet that turns up now and again in stories I never finish. I remember bathtubs with iron ball-and-claw feet, a gas fire, a kitchen with (I think) a cream and green enamel stove at which my grandma made three different kinds of meat for Thanksgiving. She also beat an egg into a small glass of sherry for my grandfather to drink every day, a ritual we children were fascinated to watch. In the backyard was an oak planted when my father was born, and over a cement wall in the way back was the Long Island Rail Road. I know the house disappeared years and years ago, but I want to find the bit of wall we peered over, and down what was probably not so steep and long an embankment as I recall, to watch the passing trains. I stare out the window every time we go through Flushing. Long gone the radiators that my grandma banged on every morning to wake her five children. Long gone the smell of baking bacon. Long gone and dispersed that family. But I remember the smell of the gas fire, the stairs that led to the second and third floors. The slate sidewalks we roller-skated on around and around the block. "Flushing, Main Street," the conductor calls out every time, but I can't find the place that matches my memory. Sometimes I imagine my father sitting next to me on the train. He doesn't say anything, what can anyone say? But his presence comforts me for a while.
By the time I have reached the hospital, Rich is waiting for lunch. There is no memory of Pago Pago. He is happy to see me and he wants toast. He stands in front of the large metal trays that usually contain food, holding his hands above them, checking to see if they are getting hot. He looks under the counter, touches a few things, holds his hands again over the trays. "This is where it comes from," he explains to me. I show him the toaster then, but he is stubborn. "It will come in a minute," he says. "This is where it comes from." Soon the techs who make lunch arrive and Rich sits down at the table. We eat our chicken cutlet sandwiches together in the community dining room. He eats well, two sandwiches, all the potato salad, seven or eight graham crackers. His beard is white, his head often bowed. He doesn't look like himself anymore, but I am growing used to the man he has become. He is tired so we take a nap together in his bedroom. "My narrow bed, narrower after lunch," he says, and we lie down together. After half an hour Rich gets up and I hear him repeatedly opening and closing the drawers in his small dresser. "I'm looking for a blanket to cover you with," he says.
Tonight home is another restaurant in my neighborhood, as familiar as grass, little candles burning on every table, lots of people leaning toward each other, talking their heads off. I like this. I sit by myself at the window. I know every inch of the sidewalk, all the stores—it's where I want my ashes scattered after all—starting here at 112th Street down to H&H Bagels on 81st and Broadway. Across the street I can see the pale blue and purple neon of the Deluxe Diner, the yellow lights of Pertutti's, where my husband and I used to eat several times a week. On the corner is Tom's, bad food but famous because of Seinfeld. It's getting to be spring. I order another Manhattan although I am already where I want to be, in that dappled place that precedes inebriation. When I go home I will look at the bookcases my husband and I bought thirteen years ago and remember with what relish he tore down the homemade shelves installed by an old boyfriend (a hundred nails in every foot of wood). He painted the bathroom a pale pink, canceling the crazy electric blue someone else had made it years ago. He was making his mark, erasing traces of other periods in my life, the outward and visible manifestations that troubled him and worried his aesthetic. Under his happy and relieved gaze I threw out my deep plush armchairs, one purple, the other a deep royal blue. Their springs were sprung and their arms were balding but they reminded me of the lobbies of old movie theaters with names like the Bijou or the Roxy. Together we bought a couch from Altman's; we re-covered two chairs he had brought with him in a sober dark green fabric. Respectability. We hung my husband's bird prints and I made him put up his running trophies. When periodically I went through closets and threw things away wholesale, he joked that if he weren't careful he'd be on the dustheap too. At first this made me laugh, later I was indignant. Who did he think I was? Didn't he know he was my husband? My companion for life? I don't throw human beings away, I said huffily.
By now, ten o'clock, I'm on my second Manhattan. Rich has forgotten I was there at all today. He thinks we have missed the train to Providence and is very upset. I can't imagine what this form of hell must feel like. The trivial analogy I make to myself is the time I lost my pocketbook at the Minneapolis airport. After the initial shock, and the immediate dilemma caused by not having my airline tickets, identification, or money, I found what I missed most was not the credit cards or driver's license, not the cell phone or cash, not even my lipstick. What I missed was my chum over my shoulder, the reassurance of rummaging through the whole mess, my fingers closing on my jumble of keys, the odd Kleenex, an old cigarette pack with one bent cigarette inside, through the little bits and pieces of detritus, proof I'd been living my life. Here's the ticket stub, here's the receipt from my framer, here is the checkbook with no checks left but a note scribbled to myself on the back, here are my real checks. Without my bag, I had no comfort, no sense of being at home with myself, a chunk of me had gone missing. This is what my husband has lost. The everyday memories of what he had for breakfast, that day follows night, the jingle of loose coins in his pocket. He has no short-term memory. He must invent it for himself.
Twenty years ago I asked a friend if he felt (as I did) a kind of chronic longing, a longing I wanted to identify. "Of course," he answered. We were having lunch by the pond at 59th Street, watching the ducks. The sun was out, the grass was thick and green, the ducks paddled around in the not very blue pond. I was between lives. "What is it?" I asked. "What is it we are longing for?" He thought a minute and said, "There isn't any it. There is just the longing for it." This sounded exactly right. Years later and a little wiser, I know what the longing was for: here is where I belong.
Last August, after three months in two hospitals, Rich returned to our apartment. He seemed to be himself, a miracle after the trauma to his brain. I recall wondering what this was all about, if after such catastrophe nothing changed. We had been through so much hell, I had changed, I knew more about myself, more about friendship and what human beings most need, I had learned how to accept comfort. And here was my husband, as if nothing had happened on April 24 at quarter to ten at night. As if the car had never hit him. Unchanged. I was almost disappointed that everything seemed just as it had before the accident. What would I do now with all I had learned? How to share it with him? I talked about this with my mentor, a wonderful woman whose husband had suffered a TBI seven years ago. She listened, then she said, "Cherish these days." Oh no, I thought, it's all going to be all right. After all, she couldn't know our future. We were going to resume our life where it had left off on April 24.
For the first ten days all seemed well. Rich made his way through the kitchen, opening cupboards, touching the table, the counters. He was "reacquainting" himself, he said. But then, very slowly, he began to fall to pieces. "Why did you move?" he began asking. "I didn't move," I said. "This is our home." He continued to marvel that I could have accomplished this—I had made an identical apartment. Perhaps it was that he was not himself anymore, and he thought it must be the place itself that had changed. I don't know. As the days went by he got angrier. Why had I done this? Why was I trying to trick him? Why was I lying? His "real" home was upstairs, or downstairs, anywhere but where he was. Then one morning Rich woke up believing that he had an eleven o'clock appointment with the Gestapo. He was afraid, but resigned. "There is no Gestapo," I said over and over, my arms around his shoulder. "We are safe, you are having a bad dream." But he was convinced otherwise.
His delusions multiplied, there were strangers in his ro
om at night. There were animals running loose. His urine was contaminated, he had sent it to Atlanta, where was the number of the NIH? He had to call them immediately. Soon my own idea of normal began to erode. The floor was tilted under his feet and I began to adjust my gait to his. Home was now a place of chaos and fear. Repeated calls to his doctor were not helpful, and Rich sank further into a paranoid existence that finally became a full-blown psychosis. One night he got out of the apartment at five A.M., barefoot, dressed only in his underwear. "Don't try and stop me," he yelled. "I'm going home." The nurse who came every night drew me aside. "Mrs. Rogin," she said to me, "in this household the insane are ruling the sane." Until that moment, I had been lost in the vortex. We finally found a doctor to treat him, and a hospital that was prepared to admit him through the ER, but though terrified and confused and furious, he wouldn't go. One awful Wednesday morning he insisted again on going home. I brought him his wheelchair. "Get in, Rich," I said, hating myself, "get in. I'll take you home."
A Three Dog Life Page 2