Three days before my husband died of cancer, we shared a wonderful evening together.

John was weak, something that had begun quite suddenly the day before, and he needed my help in order to lift himself off the couch or to climb the stairs or to maneuver throughout the house. That morning, I had to cancel an invitation to accompany my parents on a trip out of town; John was too weak for me to leave him alone. I had been looking forward to leaving behind my responsibilities for a bit ever since my parents had suggested that I needed a break—and the prospect of a short trip into the Ottawa Valley for a few hours, a chance to live a little out from under the weight of everything at home, was so enticing. The decision not to go was both completely inescapable and incredibly hard, and I sobbed for a long time after getting off the phone with my Dad. For the first time since John had become ill, I let myself tell him how unfair this disease was and how its presence in our lives was affecting not only him, but me—how I felt that I no longer existed in any meaningful sense apart from the illness, how my entire days were defined by the need to manage his illness, his almost daily trips to the hospital, the constant appointments, the endless challenge of trying to get some nutrition into him, the need to take care of everything around the house and yet to stay on top of work.

I didn't, of course, talk about the real source of my pain: the constant and never-ending worry for how he was feeling, how he was doing, the ever present dread that I was losing him. The terror every time I left the house to go to the University—would he be alright? Did he have the number for the School secretariat, for our admin assistants; did he have my office number, if he needed me? If he needed help urgently, who among our friends was on standby, who could get to our place faster than I could from downtown? Every time I left the house, I left him a roster of phone numbers. Did he know which of the staff to reach when I was in class? There was the absolute unreality of leading seminars while half my brain was worrying about him, going over the list of all the things that needed to be done, all the things I secretly feared, late at night, we would never be able to do. The tears came from deep inside, and I couldn't stop them. Months without more than an hour or two of uninterrupted sleep; every night waking every time John coughed, or moved, or when he didn't do either—always aware that in the silence, I was listening to see if I could still hear the sound of his breathing—had taken their toll a long time before.

I had always been able to keep my tears from John; a couple of my colleagues at the office, both hypersensitive to the emotional turmoil I tried so hard to conceal, would protect my privacy when I needed to be alone, when I needed to cry. There was one of my colleagues especially—always at the University almost as early as I tend to be—he'd pop into my office in the morning on the days I was there, seldom knocking, usually with an invitation for coffee, always asking, “How are you?” I'd always say fine; he never believed me, half the time studying my face intently and once asking bluntly—“Have you been crying?” His scrutiny and skepticism were so much better than the reaction of many of my other colleagues when I was around, although everyone tried so hard to be supportive. For many, I suspected, avoiding me seemed to be the easiest way to deal with the issues they were facing—confronting their own mortality and fear, their concern over how I would react if they spoke to me, their uncertainty over what to say; seeing me was too powerful a reminder that they were not invulnerable. My tears that Thursday morning, the first I had cried at home in front of John since John became sick, were doubly bitter—anger at the illness that was taking away our life together, that was so fundamentally redefining our relationship from one of partnership to one of dependency, and anger at my own selfishness for not being able, in that moment and in that time, to live by the refrain that had constantly played in my head throughout the previous months—“Suck it up Claire; it's not about you.”

John didn't try to say anything—there was nothing to say. He knew, because he knew me better than I know myself, that my anger wasn't directed at him; he knew because he understood me so completely in the mental gymnastics I had engaged in to separate the cancer from him, the cancer from our lives, that he would only have laughed had I tried to go down that road again.

In all our many years together, I almost never cried. Tear-jerker movies when I was tired, OK, but for the rest of it, not often. Even when my doctor, who had not really heard my complaints for months and years, told me there was nothing wrong, all the tests were always negative, and my pain was probably—almost certainly—because I couldn't really handle my stress well and I had a job that was “too big,” even when I finally ended up in surgery—I didn't really cry. John did, his mourning for the children we would never have, his pain for me—and he loathed doctors more than he already did from that moment on—but I didn't, not all that much.

John always understood that what would drive me to tears, the deep, profound kind of tears, was my sense of lack of control. I don't yell, I don't hit things, I don't break things; I cry. I internalize my anger around powerlessness, and, when I can't take it anymore, it comes out as tears. There wasn't a lot of anger or sense of powerlessness in our relationship, and so not a lot of those deep, painful tears. When those tears came, though, I couldn't sit still. I paced down hallways; I walked up and down stairs; I tried to move through the pain—literally, physically. And I was moving that morning, upstairs and down, back and forth, choking on the tears. In the few times before, when I'd cried like that, when John was well, he always managed my pain in the same way—knowing me as he did, he would wait in silence, wait until some of the intensity of my anger had started to subside, then he would get up, catch up with me, and hold me. It would always be too soon for me; I'd still be struggling with the physical restlessness the sense of powerlessness provoked; I would always try to wrestle free, but he would just hold on a little tighter until I let the anger go.

That morning, of course, John couldn't catch up with me, he couldn't hold me, he couldn't get up off the couch. So it took longer—longer for me to feel the pain subside, longer for me to let the anger go, longer for me to fight through it alone than it would have taken with him to help me. When I finally could breathe properly again, I sat down on the couch next to him and without saying a word, he gently stroked my back. It was usually that way with us; more often than not, if we tried to talk, words would get in the way—so we had learned that for us, there was no need to talk, no need to explain. We just knew each other and completely accepted each other for what we were to each other, in all the messiness of it. Even if I was angry at myself for crying, and would be angry at myself for a long time after his death because of it, I knew then—as I do now—that our relationship was a completely safe space.

Astonishingly—but not really, knowing John—after my emotional meltdown, the normal banality of our lives, even of our lives with cancer, reasserted itself. I helped him get dressed—even if it was out of the question that he would leave the house that day, he never wanted to spend an entire day in his pajamas—and then I did some housecleaning. I never wanted to do too much cleaning at any one time; I think it was when I did the cleaning that John experienced his frustration over his cancer most acutely—cleaning the house had been his responsibility in our household division of labor for so many years, and it drove him nuts to see me having to take that on.

Meals were always a struggle once John had started to feel his treatments; he really had no interest in food. There are only so many ways you can make meal replacement liquids look good, and apparently, only so many times you want to eat the gelatinized cubes of juice into which I'd dissolved protein powder (God, that sounds so awful even as I write this). It would take him ages to drink the stuff. I would eat lunch when I could; most often in the kitchen alone downstairs so that he wouldn't have to smell the soup or whatever since that sometimes seemed to bother him. Mealtime for me had become a three-minute break standing at the counter, and then an hour or two of reminding my husband sitting upstairs to drink another gulp of Instant Breakfast, or Ensure, or whatever other awful stuff (the sweetish smell of which I couldn't stand) he had decided he'd try to consume that day. That Thursday noon was no different; John wasn't hungry, I was after him every few minutes to drink something. John always took in more calories when I was at home all day, if only to get me off his case; I know that he really didn't make much of an effort to consume anything when I was at the office, no matter the promises he'd swear when I left the house in the morning. At least, I would try to reason, I've got my teaching packed into two days and I'm not going into the University on the other days—with the full blessing of everyone. A lot of support after all of the years of administration and way too many early mornings and late, late nights. At least.

After lunch, John would nap—never in our bed; that was too much like being sick for his liking—but stretched out on the couch in the upstairs family room. I could work for a bit; I'd bring my laptop in and sit on the loveseat, not the best place to write—not that I could focus all that well to do much of that—and not great for my back day after day, but I could keep an eye on him and I know that it made him feel better to know that I was there. He slept well that afternoon, not too restless, not too much coughing; his breathing was good. I even managed to shut my eyes for a few minutes—a rare, rare thing.

John woke up in a great mood. He had such a wicked sense of humor. A quiet, gentle man, much less inclined to take control than me, struggling with so many of his own demons throughout his life, the way we all struggle with ours; everything he had lived, everything we had lived, all of it, had honed his sense of humor until it was so, so sharp. And he was so funny that evening. We'd been together for such a long time that I can't figure out now whether he became a political junkie because of me or whether my decision to do graduate work in politics was because of him. Probably a bit of both. By the end, with his illness, John felt there was nothing more fun than heckling CNN, and he was into it in spades that evening. The Democratic primaries were still rolling along, and we were debating the strengths and weaknesses of Clinton and Obama as Democratic standard bearers, worrying about the race and gender cards and how the Republicans might play them and where that would resonate. It drove John nuts that he liked McCain, at least as the media portrayed him, although he couldn't stand the man's politics; whenever he found himself saying something nice about McCain, he would launch into some sophisticated deconstruction of the latest Bush fiasco (“Shrub,” he always called him, ever since he had heard a Texas reporter use the name), and that would restore the sense of reasoned equilibrium in his political world.

John was hungry that night—for food. Of all the things about that evening, I think I best remember my astonishment that he wanted to try to eat something he needed to chew. I made a bit of chicken—not his favorite, but I thought the virtually instantaneous transition from Ensure to steak would be a bit much. Plus, I never really liked steak—it's amazing how differently I eat now that John has died. Anyway, John did eat—not a lot, but a couple of ounces of chicken, a bit of mashed potato, some corn (clearly, I didn't make the meal to suit my preferences!), and he enjoyed it. And he was as sharp as a tack. If John had been well, or at least not too sick, we would have been in San Francisco that week; one of the annual conferences I almost always attend. For years, John never came with me when I went to conferences; despite the fact that most of our friends are academics, and he was close to many of them, he actually hated us when we got together as a large group—too much shop talk, and too much self-importance, he always said. A number of years ago though, I had a conference in New Orleans (well before Hurricane Katrina), and John had decided that he wanted to come—give a trombone player the chance to go to the home of Dixieland Jazz, to visit Preservation Hall, and I guess that's enough to overcome all resistance to hanging out with way too many International Relations scholars. Since then, since discovering that he loved his own company while exploring strange cities, and it didn't matter if I was working all day, he almost always came with me. He had adored San Diego a couple of years earlier, and he was eager to go back to California. We were really looking forward to San Francisco. It took me so long to pull out of the conference and to cancel the hotel and flight reservations—I didn't do it until well into March. It was ridiculous, it had been clear for a long while that we weren't going to go anywhere, but I was so reticent to let that hope go. Still, that Thursday night was good—it felt almost normal, pre-cancer normal, and it had been a long time since anything had felt like that.

John slept well that night; I didn't, but that was part of my reality of life with cancer. I've never had a child, but I think that living with a man who is deathly ill has got to be something like living with a newborn, without the joy—you sleep, but you don't at the same time, always listening for some unusual sound, or lack of sound. My mother had been increasingly vocal about the issue of my lack of sleep—she wanted me or John to sleep in another room and she was after me to buy another bed or a lazy boy chair or something—but you can't really sleep living through what we were living through, and I didn't want to leave John alone.

When John woke up in the morning, he was a little confused. We were talking, there was no problem communicating, but there was something wrong—there was a mental sluggishness to him that was so unlike him. We walked down the two steps from our bedroom to the family room landing; he seemed steadier on his feet than he had been the previous morning, and had no trouble navigating the way to his favorite spot on the couch without my help. Liquid breakfast and John decided he wanted to shower. I helped him off the couch, but he was determined to walk without help, so I followed him closely. The sequence of events was so predictable I knew it before it happened; he didn't wait for me to help him up the two stairs to the bedrooms, he couldn't navigate the steps, and he fell. I caught him, he didn't hurt himself or hit his head, but he fell. John was quite articulate at this point; he didn't want me to call anyone to help lift him, he wanted only me to help, but for me, it was like trying to lift an impossible weight. John couldn't help himself or help me to help him. I have no idea how I managed to lift him upright again. I only know that my muscles, my arms and my back, were sore for weeks. After John died, when I could feel that pain, I refused to medicate it; I needed to remember John through it, even if it meant remembering John when he was so sick. I felt panicked, alone, and John didn't want anyone around him but me.

John had always been so proud of his physical strength and so private about his personal space. Everything had now changed. I had to help him shower. I had to help him use the bathroom. I had to help him get dressed. Literally, only a couple of days earlier, he would have been mortified. I knew that we were in trouble, not because John was as weak as he was or even because he was increasingly confused (although both scared the hell out of me), but because the transformation in our relationship was suddenly complete. I was John's nurse, and John wanted it that way. The man who just a few days before would have articulately and at length argued that I should never assume that responsibility because of the fundamental way it would change who and what we were to each other now had absolutely no problem with the transformation he so completely opposed.

By the time I had helped him back to the couch, things had started to change really quickly. It was such a contrast to the night before, it was as though I had been dropped into a different world—the same man, the same house, but completely, utterly different. John knew me, and we talked as always, but it was as though his world was shrinking into only the space he inhabited directly—everything outside that space was a blur. He knew our house and our things, but when, concerned that something was really amiss, I asked him where we lived, he answered—looking at me as if I was crazy to ask—“in our apartment.” We'd owned the house for over 11 years and we hadn't lived in an apartment for a few years before that—so apartment living had been a long time ago. I asked him what our address was, and he gave me the address of the townhouse we'd rented before buying our place. I asked him our phone number—he couldn't answer. He got angry at me and accused me of being unfair; told me I should have told him that there was going to be a test and he would have studied for it. The thing is, he wasn't kidding—that wasn't his sense of humor talking. I asked him what year it was; every time I asked it was a different year, but never in this millennium. I was terrified. I felt as though I was living some macabre scene out of Invasion of the Body Snatchers—someone had taken away my husband and left I don't know who behind. I don't think he knew either.

We had an appointment with John's doctor at the Cancer Centre that afternoon. I debated whether or not I should bring him into Emergency or wait for the appointment; it was a strange feeling weighing what to do and what would be best. After all those years in administration, I thought I'd honed my ability to assess a situation quickly and to be decisive about it—and the University had given me a lot of latitude to do the things I wanted to do based in part on that ability. And here I was, my husband really sick, and I couldn't figure out what I was supposed to do. It felt as though I weighed my choices forever—of course I didn't—and then I called John's nurse on her pager. She got back to me a little while later; we talked about what was going on, why I thought I should bring him into the hospital now rather than wait for his appointment, and she went to talk to John's oncologists, having caught both of them while on the phone with me. Her message after the consultation was simple—“they agree with your diagnosis [I remember rolling my eyes to that], bring him into Emergency, tell them what you've told me and he'll be admitted. His doctor will come up to see him once he's in.” I felt some measure of control again and the panic subsided.

Getting John to the hospital wasn't easy. Because I knew it would be complicated getting him into and out of a car, I called my Dad for help rather than calling a cab. I knew that calling an ambulance would have scared John completely—his disorientation was increasing and he didn't want to leave the house. Dad had never shown much emotion throughout the whole ordeal with John, but he was always there in the times that I needed him, and he was there again that day. In the half hour it took my father to get to the house, though, John's world had shrunk to include only me. He didn't really understand where we were going or why. I lied and told him over and over that we had to go to the hospital for his appointment. He would have been completely scared if I had told him that I was scared and that I was taking him to Emergency.

Once we got to the hospital, I had to get John out of the car and into a wheelchair; not simple, but it was easier than lifting him up off the floor. John really didn't want to be there, and let's face it, waiting in Emergency is hardly enjoyable even if your world isn't completely collapsing, as his was. The more confused he got, the angrier he got with me; he really wanted me to take him home. I was almost relieved that he didn't have the strength to lift himself out of the wheelchair, though, goodness, he tried. He was so ticked off at me.

When we met with the triage nurse, I went through the story—the cancer, his treatments, his doctors, what had happened in the past 24 hours, who I had consulted, on whose recommendation I had come to Emergency, the whole of it. She took notes, didn't say a word. When I finished, she looked at me and asked—I would be asked the same question four more times while we were in Emergency—if I was a medical doctor. I had never said I was any kind of doctor. The last time that happened, many, many hours later, I was so tired and so worried, I didn't do a good job with my frustration at the question. Not only medical doctors are smart; not all smart people choose to be medical doctors. Some poor Emergency resident, who didn't deserve it at all, got my sarcasm—“no, but apparently analytical skills can be transferred between disciplines.” I remember thinking—“oh, this is good, you're becoming a bitch … very helpful.” I did apologize to the woman later. She was far more gracious than I had been. She had also witnessed the most difficult part of that Friday, at least, for me, and I had seen her looking at me intently as the pain crossed my face. She had asked John, who was getting more disoriented with each passing hour, if he knew who I was and if he knew my name. Dates, phone numbers, addresses, years—those had been gone for hours, I knew that. When she asked him in the early hours of that Friday evening, it took him a long, long time to remember that I was his wife, and he had no idea of my name. He tried “Sara” as an answer—I have no idea who Sara is, a name that just popped into his head. John's world was shrinking so fast that it hardly included space for me anymore.

Hours later, I was standing next to John's gurney in the intensive care section of Emergency. I had been enlisted as John's orderly, to assist him when he needed to urinate, to keep his mouth from becoming too dry, to support him in anyway I could. John might not have remembered my name, but he clearly did have memory of me, and he hated when anyone else tried to come near him. It was there in Emergency, once John was more or less settled and dressed in a hospital gown, that I met the man I immediately—and bitterly—christened Dr. Death.

We've all watched bad TV or bad movies with bad doctors with horrible bedside manners. I don't think Hollywood would do this guy; no one would believe it. I'm standing next to John, John is still perfectly conscious and perfectly awake; it's late at night. I'm stroking his brow and trying to comfort him in a situation he clearly finds upsetting. He really wants to go home. Dr. Death tells me that he has decided to admit John—about 10 hours after we've gotten to Emergency, obviously many hours after John's own doctor's day has ended. So much for seeing her once he was admitted. He then explains, apparently assuming that I'm a complete imbecile, incapable of understanding words of more than two syllables, that “cancer patients go along like this for awhile”—at which point he “draws” a straight line through the air with his hand, and then, for no apparent reason, he tells me, “they go like this”—now his hand is pointing toward the ground and he is moving it downwards, in a steep decline. As a result of this reality, he tells me, he has two questions for me: First, do I want the hospital to take extraordinary measures to keep my husband alive, and second, will I allow the hospital to harvest his organs … well, he has cancer, we don't want his organs, we just want his corneas. Is that OK?

It takes every ounce of self control for me not to hit this man. I feel awful for John who has heard all of this, I want to protect my husband, I want this man out of my sight, I want to hurt him, I want to scream. Dr. Death is oblivious. He asks me if John has given me power of attorney; I tell him no, this makes no sense; it's too soon to even talk about that. He finally looks at John, whom he has ignored to that point. “Do you trust her to make decisions for you?” he asks him, pointing at me. John smiles at me and says: “Yes, absolutely.” “Oh, that's nice—he loves you,” the doctor says to me, his tone of voice unbelievably patronizing, mocking. I feel violated, sick. Dr. Death turns to a nurse who is walking by. “Record that he's just given her power of attorney,” he tells her. I really, really, really want to hit him.

Dr. Death tells me that it is clear to him that John's disorientation is due to the fact that the cancer has spread to his brain. I finally find my voice and enough calm to tell him that John has had both brain and bone scans in the past week and a half—he expresses surprise, and tells me he had no idea. I lose my temper, and for the first time that day, it's not frustration disguised as sarcasm, but absolute anger that comes to the surface. “The next time you come here to tell me that my husband is about to die, at least do me the goddamned decency of looking at his fucking chart.” Thus ends our conversation as well as his inclination to have anything else to do with me—hopefully ever again. It doesn't accomplish anything, but it feels good to have said something, however rude, however out of character. I am profoundly relieved that he is gone. A few minutes later, one of the Emergency Room nurses comes up to me and whispers, “We heard what you said and we just want to say that we love you.” I know from some of my friends at the University that the doctor–nurse relationship is not always an easy one, at least from the nurse's perspective, but I never expected to have such profound empathy for all nurses everywhere. At that moment, I commiserate completely.

Much later that night (in the wee hours of Saturday morning), I run into the Emergency resident who had borne the brunt of my earlier sarcasm. Feeling a little uncomfortable given those comments, I nevertheless ask her if she can find out the results of John's bone and brain scans—results I was expecting us to get Friday afternoon, had we been able to keep the appointment. About an hour later, she finds me and tells me that they are both clear, there's nothing there, it's fine. I don't know if I believe her. I don't know what the truth is anymore. I hate Dr. Death, but he has just told me that John has fallen off a cliff because he has brain cancer, and now this woman is saying that's a lie. It's hardly surprising that I shouldn't know what the truth is and maybe it's my just reward; I've spent a lot time with graduate students talking about how to find a ground from which ethical political action is possible, navigating between the absolutism of rigid and dogmatic truths, with their unpalatable and quite simply evil historical consequences, and the morass of relativism, with all of its hugely problematic moral and ethical ambiguities. The problem is, the pursuit of the good life, defined in terms of that ideal of the moral or ethical life—issues I have lectured about in one way or another it seems to me like forever—doesn't provide any easy window into the discernment of truth. I think that at that point, I don't care. It feels like some sort of victory over Dr. Death, some sort of vindication—meaningless, except to me—some sort of reclaiming of control, some sort of way to protect John. It is all moot, and given what happens as the hours go by, given that Dr. Death is more right than wrong in the end, even if not for the right reasons, all irrelevant, except I know I hate this man, and I need to protect my husband, who has become completely dependent upon me, from an environment I've increasingly come to know as callous, unfeeling, hostile, even cruel.

At around 3:30 in the morning on Saturday, given that Dr. Death isn't speaking to me anymore—he's even going out of his way to avoid coming anywhere near me—I ask one of the nurses to explain to me what's going on. Pretty much every patient in the intensive care section of Emergency is sleeping and things are pretty quiet, so she spends some time with me. John has gotten a transfusion; his hemoglobin is low; they are giving him antibiotics as a precaution, and they are flushing his system to deal with excess calcium. She spends time explaining this to me—I get it, it all makes sense, it seems to correspond to what's been happening to John, and I finally feel as though something is being done. We've been at the hospital for close to 16 hours; I haven't eaten since Thursday dinner, and I feel as though I haven't slept for a million years. She confirms that John's been admitted, but they don't have a room for him, and won't likely move him until the morning—if they can find a room and if we're lucky. The nurse delicately suggests that I should consider going home; a stackable chair does not make a good place for me to shut my eyes and on top of that, I look like hell (she's more polite, but the point is clear). I don't take it personally; I feel as though I'm living in hell. John's asleep; I kiss him goodnight, gather up his clothes, and head out to call a cab.

I don't get home until 4:30 in the morning; while we live 10 minutes from the hospital, getting a cab in the middle of the night is apparently not the easiest thing to do and requires three—increasingly insistent—phone calls. When the taxi pulls into our driveway, I notice that all the neighbors have put out their garbage and recycling. It occurs to me that because Sunday was Easter and Monday was a holiday, pick-up has been delayed by a day and that means garbage in a couple of hours. For reasons I can't understand, even at the time, taking care of that seems important, and I find myself putting the garbage together and hauling the compost and recycling out to the curb at 4:45 a.m. Then I realize that I had put the bed sheets in the laundry the previous morning, so I head to the dryer, grab the sheets and make the bed—I don't climb into it until well past 5. As I lie there, it occurs to me that I have never slept in this house—in our house—without my husband next to me. I often travel without him, but at home, he's always in the bed with me. It hurts and I feel scared.

The phone rings at 6:30. It's the admissions clerk at the hospital. They have a private room for John, but they won't move him until I come by to sign the form promising to pay if our insurance doesn't. I fall out of bed, take a shower, get dressed—and call John's mother. She has no idea that John is at the hospital, no idea how sick he's gotten in the past day. I'm not certain how she's going to react to my news that John's been hospitalized, but she tells me she's relieved, that it's good he's being cared for and that this will give me a break since I'm clearly exhausted. She wants to come to the hospital to see him; I tell her to wait until he's feeling a bit better. She agrees. I promise to call later.

I head back to the hospital and get there some time after 7:30; the admissions clerk has the forms ready for me to sign. She needs our insurance number, which John had not been able to provide. She tells me that he told her to call me, since “my wife knows everything.” Given that I'd taken his wallet home with me, there's no way that he could know the insurance number—I certainly don't know it by heart, and it's my insurance. As I sign the form, I notice that there's lots of information on it: name, address, phone numbers (ours and mine), his parents' information, lots of stuff. I ask her how she got all the information, which seems correct at a quick glance. She tells me that John told her. I ask her if he was lucid; she tells me she's not a doctor—I tell her I'm not asking a medical question, I just want to know if my husband could answer her when she asked him for the information. Yes, she says, no problem. He was good.

As I get up to leave, I ask her where she found John; she directs me to another section of Emergency, different from the one I'd left a few hours before. I track him down, cautiously optimistic that some of my husband will have come back to me. When I see John, I know that isn't true. He becomes agitated as soon as he sees me; he is so livid that I left him for the few hours I've been away that he is literally seething. No one seems to be paying any attention to him. The nurses and everyone are having a meeting in the center of the room; they don't notice when I arrive, and they don't notice how agitated John gets, how he's trying to pull out the IV and remove the oxygen. He wants me to take him home, he wants out of the hospital, I know that. I try to calm him, but it becomes clear that I have to sit out of his line of sight to avoid agitating him more. I can't go near him or his anger rises. My heart is breaking.

Within a little while of my getting there, someone comes by to tell me that John will be moved; the orderly shows up about half an hour later and I follow him to Oncology as he wheels John there. The room is standard hospital issue, but so much nicer than Emergency that it feels like a breath of fresh air. John calms down too, and isn't so angry when he sees me now that he's in a quiet room. John's nurse, a wonderful woman I immediately like and whose name I so wish I could remember so I could thank her, starts to take care of him as soon as we arrive. She and I talk about his illness and about how we're coping, how I'm coping; she asks me a series of questions for her forms, but she asks me other questions, not bureaucratic ones, about what has happened to this man I have loved for so long and what the last days and weeks and months have been like. What happened recently, why did I bring him to the hospital, how were things at home? She tells me that John doesn't hate me, that he isn't really angry with me, that it's just his confusion that makes him upset. I know that, but I love that she's worried that I don't, and that she takes the time to reassure me in case I have doubts. She's concerned about me; what has it been like? She tells me that I will never have to go through again what I've been going through in the past while; the hospital won't release John without making sure that I have adequate support to help me at home. She says if the doctors can't see that (and she says they often can't), the nurses and social workers will protect me. She can't figure out how I could lift John—I can't begin to explain. She promises me that this won't happen again, and that I am not alone. I want to hug her.

In the past few months, no one in the medical community has ever asked about me. I'm clear on who the patient is, and that I don't figure in anyone's priorities. It isn't about me. Every time John and I have been at the hospital, people conclude that I'm competent and so give me more to do, more to take care of, more to monitor, more to manage. They never ask; they just instruct. We've thought about it, but I can't take a leave through this; by now, even though it's getting harder, term is well underway, replacing me is not easy, and quite frankly, we need my income to live comfortably and we can't add money worries to our lives right now. Our home situation is completely irrelevant when we're at the hospital, anyway. No one has ever asked John or I what he does, or what I do, or if we can manage more, or how we can manage more. I love John, I'd do anything for him, but I've spent months denying to myself and to anyone who will listen that I'm falling apart. This woman is the first person we've met since John got sick and started the almost daily hospital pilgrimage who seems to get it, who seems to understand that this has taken a huge toll on both John and I, and not just on him. I'm reminded of the dear friend who calls every week from her home in British Columbia, and scolds me whenever I tell her this is not about me—“this is absolutely about you—this is your husband, the man you've loved forever, this is everything about you.” I've never felt I've had the right to say that this is hard on me and is hurting me; this woman, this wonderful, wonderful nurse, understands that without my needing to say anything, and throws me a lifeline. I realize how isolated I've felt, and how much I've needed someone to tell me that they understand.

Some time later, the oncologist comes in; someone else I've never met, but not Dr. Death, so to my mind, an enormous improvement. He seems to be a gentle man, and right now, John needs gentle—hell, so do I. He goes over what I learned a few hours before from the emergency room nurse; nothing different, he says it'll take three or four days and John should be 90% back. Quite frankly, if John remembers my name, I'll be thrilled. I don't want perfection; at this stage, I just want a chance at another conversation with my husband. He asks me about John's disorientation, I tell him bits and pieces; he responds with a bad one-liner—it makes me smile, which I haven't done in what feels like ages. Humor is a big part of me; it was a huge part of John, and a joke—even a bad one—feels good.

Despite the cautious optimism I let myself feel at the oncologist's prognosis, John doesn't seem to get any better as the day goes on; he's agitated, seems at times to be in pain, and he's not talking much. His breathing starts to get worse and begins to sound awfully congested; the oncologist keeps coming back and seems concerned about that—as am I, but there's little I can do. Every time he comes in, he looks at John, shakes his head, and says: “poor guy.” It seems every few minutes, “poor guy.” I know he's trying to be empathetic, but I get to the point where I think if I hear him say that one more time, I'm going to scream. My husband is so much more than this sick man, he's so much more than the “poor guy” lying in the bed. John's a wonderful musician, a pilot, a flight instructor, a businessman, he's a not-always-so-handy handy man, a voracious reader, mostly of history, he's funny, gentle, kind, and loyal to a fault, he makes me laugh; he's passionate about travel, about our home, about our life, about me. Why don't you ask me something about him, so he's not just the “poor guy”? I know, too busy, no time, no one's fault. Not important. It occurs to me that the wonderful nurse never really asked about him either. If John can't answer, does it mean no one can ask? The oncologist orders X-rays, but doesn't really communicate much about what he's thinking—maybe pneumonia, something is going on. Normally, I'd ask for more information, but I'm too tired and too worried about John, and I don't think I'm going to get a full answer anyway; I don't know that there is a full answer to give—and I don't want to hear “poor guy” again. I try to talk to John; he drifts in and out of sleep. I feel completely incapable of doing a thing, completely useless to John.

At one point in the afternoon, John's wonderful nurse is inserting a catheter; I asked for it, I think it might help John feel a little less distressed. I don't know—anything seems worth it at this point. It tears me apart to see him suffer so much. I just want to protect him, and I have no idea how to do that. While the nurse is inserting the catheter, I go out into the hall; John is a private person, I always respected that in all the years we were married, and I'm going to respect that now. I lean against the wall and I can feel the intense pain of everything that's gone on, that's going on. One of the other nurses comes up to me and looks at me with a lot of empathy in her eyes. “My god,” she says, “you look exhausted. When is the last time you slept? When is the last time you ate?” I can't answer, although I know the answers to both questions aren't good. I start to sob. She immediately holds me and lets me cry; then tells me she is going to get me a cup of tea; what do I take with it? How she knows I survive on tea, I don't know—the clear hot liquid helps me so much to find some strength and control. I hear her telling John's nurse she's worried about how exhausted I am and John's nurse agrees; they start opening up the chair in John's room and preparing a bed so I can lie down. I try to do that; but John's breathing is getting raspier and I can't relax; he continues to be agitated and I try to calm him by stroking his brow—that seems to help.

Finally, John's nurse tells me I need to get home; she asks me point blank when I last ate, and I realize that it was Thursday evening at dinner. I haven't slept more than a couple of hours since then either. She tells me to go home; to make myself dinner, to pour myself a glass of wine, and to get myself to bed. John is where he needs to be, there's nothing I can do, and I need to take care of myself. I know she's right. I put on my coat to leave, and as I do, John wakes up. “Where are you going?” he asks, almost accusatorily. “I'm going to get some dinner,” I tell him, avoiding mentioning that I'm going home—where he so badly wants to be. “You remember hospital food.” He smiles; he does, from when I had surgery. “I'll see you soon,” I tell him, and he nods goodbye. It's the last conversation we'll ever have.

I grab a cab home; I'm feeling OK. John is in good hands, he's where he needs to be. He's not in Emergency anymore, anyway. I get in the front door and start to think of what I should eat. I have no appetite, but I'm used to thinking of food as an intellectual exercise after the past months with John, so I decide I need to apply the same logic to myself. As I check the fridge, I suddenly can't think about eating anymore. I'm compelled, by emotions I don't understand and can't explain, to start rearranging the furniture in the house.

I had moved a lot of furniture, particularly upstairs in the family room and in the hall, to make things easier for John as he grew weaker. I start moving everything back. It doesn't make any sense, and I keep asking myself why I'm doing this when John will be home in a few days and I'll only have to move everything again—and my answer is always the same: fair enough, but you need a few days in the house the way it used to be. I move everything back to the way it was before John got sick. I go downstairs to the main floor; the dining room table is covered with meal replacement drinks and nutrition guidelines and hospital literature and stuff on the side effects of radiation and chemotherapy and letters from the hospital confirming appointments for more tests and the calendar I have with all his appointments and treatments. There's the bottles of medicine he hates swallowing which are supposed to make it easier for him to eat, to avoid esophageal burning. There's the morphine tablets John almost never takes. There's no way anyone could eat on that table; there's no way anyone could walk into our house and not know that a really sick person lived there. I put everything in a box and bring it to the basement. I don't know why, but I am compelled to do it. I need the house back to the way it was. The box is still in the basement; I can't bear to look at it.

Somewhere in the midst of all that reorganizing, inexplicable to me now as it was then, I feel something I've never felt before or since. It feels as though something inside of me, deep inside of me, is tearing apart, splitting in two. It actually hurts—it's physically painful. I can feel John moving away from me; tangibly, palpably. In that instant, I know that he is dying, with a certainty that is absolute. Our trajectories, linked together for so long, aren't on the same path anymore. He is dying and I am alone. I know in that instant why I am rearranging the furniture. My husband will never come home.

I finish putting the house back together, pour myself a glass of wine and go upstairs. I sit in silence and in the dark for ages. The phone rings; it is John's nurse. John has had a respiratory incident, she tells me; there's a blood clot in his lung. The crash team had worked on him for a couple of hours. Pulmonary embolism, I thought. I now knew empirically what I had known so profoundly, so deeply, earlier. I ask her when this had started and she names a time—about the same time I knew that John was dying. She asks me if I want to come back to the hospital. I feel incredibly selfish, but I need time—time to get ready for what I know lies ahead. I ask her if he is stable; she says yes. I say I'll call throughout the night, and that she needs to call if anything changes. Half an hour later, the phone rings again—I hold my breath when I answer. My dear friend is calling from San Francisco, with all our other friends around. How are things, she wants to know. I can't talk, I answer. Why? I know John's dying, and I need to keep the phone line free in case the hospital calls again.

I don't sleep in any meaningful way during the night. Twenty minutes here and there, between calls to the hospital and a lot of tossing and turning and tears, the sense of incomprehension and desperation invading my being. This is happening much too fast, too fast for me to process. How can this be happening? How does bringing him to the hospital result in this? What did I do wrong? Whenever John had asked his doctors if he was going to die, he was always given the same answer—there are treatments. John lived by that; so did I. This makes no sense. John remains stable, at times agitated, at times less so, throughout the night. Somewhere around 4 a.m., his nurse reads me the riot act—we sent you home to sleep and you're clearly not doing that. Clearly not.

I get up early on Sunday morning, check in with the hospital, then call my mother to tell her that I know that John is dying. Mom tries to calm me—did a doctor tell you that, did anyone tell you that? No. I cry. I know I'm right, but I can't explain how I know. I dread going back to the hospital; I dread what's to come. My husband is dying.

Everything is so quiet when I get to John's room. The oxygen mask is bigger now, and covers a lot of his face. His gown has been changed, and he looks less distressed than he had the day before—not calm, but less distressed. His nurse, a new nurse, tells me he has been unresponsive since the previous evening—I already know. I stroke his brow; the lines on his forehead diminish and then disappear. He knows I am there. I sit down at the foot of his bed and start talking to him—nonsense, banalities; I tell him I'd remembered the garbage, silly stuff like that. I'd brought some embroidery to do; I needed to keep part of my brain and my fingers busy. When I went back to it several weeks after he died, I realized all the stitches I had done at the hospital needed to be pulled out and started again. Somehow, that seemed right.

As I am sitting there, talking to him, not paying attention to the needle and thread work I am doing, John suddenly opens his eyes and looks right at me. In his eyes, it is completely and totally him—no drowsiness, no confusion, no drugs; just him; absolutely, utterly him. He smiles at me through the mask; I smile back. He lifts the fingers on his right hand and waves them at me; I wave back at him. Neither of us says a word. He shuts his eyes for the last time. A sense of comfort washes over me; comfort, and searing pain. My dear, dear husband, by whatever strength of will or by the force of love, had found a way to say goodbye to me. He was now fully in the space between life and death; we would only grow further apart from that point on. He had said his goodbye.

Minutes passed in complete silence. The same oncologist as had been around the previous day came into the room; I could no more remember his name than I could the name of the nurse I liked so much. He pulled up a chair close to the one I was sitting in. “He's dying,” he said simply. Nothing else. I know. “I can't treat him; he's too sick.” I figured it out, was all I could answer. He told me something about the nurses saying I was really smart (I could only think, good lord, not this again …). He didn't know how long—24, 48 hours. After so many hours of knowing, this moment seemed anticlimactic, banal, almost trite. I was so relieved that he didn't beat around the bush and instead told me straight out. It would have been awful to have listened to him taking the long route to what I already knew.

In retrospect, I don't know what I expected to feel when the oncologist told me John was dying—something, I think. Instead, I feel nothing—I guess I had already had hours to integrate the knowledge. I had things to do. The oncologist asked me if he could do anything for me—that was kind; I asked him if he would speak to John's parents when they got to the hospital. I figured it would be easier for them that way. He agreed, as long as they made it to the hospital before he left. He was honest at least. I get that this is just another day for you. I asked him if I could use his phone to call my family. He tried showing me one in a lounge instead (someone was already using it), then relented and led me to the physician's office in Oncology. I found it strange that he would have preferred me to use a public space to call my in-laws, but it didn't really matter. It was all surreal. But he was gentle, and I was so thankful that he wasn't Dr. Death; he didn't ask if the hospital could harvest John's corneas. He left me alone after that; I could phone John's mom, phone my mom, phone one of my friends to tell her. Short conversations; there's nothing to say beyond John's dying. Things were in motion, things I had never wanted to set into motion, but there was no stopping this reality now.

I went back to John's room. The wonderful nurse, although she wasn't assigned to John that day, came in and sat in the chair next to mine. She took my hand and held it. She said she'd sit with me for a bit. She had tears in her eyes. Through the tears, she asked me how I was, what she could do to support me, what it was I needed. She was really concerned to know if people were coming to be with me; she didn't want me to be alone. It was so different from the conversation I'd just had with the doctor. It hit me while I was sitting with the nurse that he had never said he felt sorry; maybe I had felt no emotion when he told me because he had expressed none. It was so different with her. She didn't know John at all and barely knew me, but she cared about him and about us, and I could feel that. In taking my hand, she acknowledged the magnitude of what was happening to John, to my John, and by extension, what was happening to me. The tears finally came to my eyes. She said, “I like you so much; I'm sure I would have liked him too.” I'm sure you would have. It's not fair. She asked if we had any unresolved issues—I said no. She said it would be easier for me after he died because of that, that I was lucky in that way. There was nothing more to say.

In that space between life and death, in the space John was in, there's an unreality. In the next few hours, as he moved closer to the time of his death, my world got busier, where I think it should have grown quieter instead. John's parents arrived, his dad in shock, his mom in tears. John's mother cried in my arms; I repeated platitudes to calm her—I have no idea what I said. I was becoming numb; my brain on overdrive, thinking of all the practical things that needed to be dealt with: funeral home, Church, who to tell, what to do. I was trying to help her, and feeling completely disconnected at the same time—wishing that John's brother and his wife would show up so they could give me a hand. When they did get to the hospital, John's family went into his room and the oncologist spoke to them. John's brother told me that the doctor was cerebral and clear, and that's what he wanted. In the unreality of the moment, now was no time to get emotional.

I had asked that a Lutheran minister be called to perform the last rites; I don't think that it mattered much to John—we were married in a Catholic Church and, when and where religion was important to us, it was my faith that defined us—but I thought that it might help his parents. After the oncologist, after the minister, I told John's brother he had to help me. I needed him to get in touch with a funeral home and get the arrangements started. I would stay with John until he died. My parents came and left, John's family went home; I tried to sit still, but I needed to pace. I needed to walk through the restlessness of my world falling apart. One of my friends had come to be with me, and we paced together.

Some time later, we were sitting in John's room. My friend was so great. She kept telling me that John knew that I had done everything and then some to take care of him, to keep him safe, to keep him well. She kept reassuring me that there was nothing more I could have done, that I had done way more than anyone else would have done, and that John knew that. She pointed out how his furrowed brow would relax when he heard my voice. John looked so small in the bed, almost peaceful, so quiet. He loved the quiet. Some of our happiest times over the past years had been spent enjoying the quiet; waking up to the sound of a foghorn whenever we stayed in Port Rexton during the summer—with the fog so dense you could barely see where you were putting your feet when you walked outside, but the air so clean it smelled sweeter than anywhere else. John always hoped I would take a sabbatical or a research leave in Newfoundland; he loved to imagine us wearing thick wool sweaters and sitting on the front porch of a house overlooking the ocean, with our steaming cups of coffee and—of course—my laptop. That would never happen now. I felt a sadness that defied tears, that defied being named. The sadness is with me still.

Around dinner, my friend's partner came to the hospital with some food for me, and another dear friend showed up to spend the evening. My sister and her husband came too, to see John, to see me. A rotation of support had been set up for me, somehow. Medical people came by me with a cart; they went into John's room. I don't know who they were or what they were doing; no one said anything. When they left his room, they still didn't speak a word, although one of them stopped and looked at me for what seemed like ages with sorrow and pity in her eyes. A long pause, nothing spoken, nothing said.

It didn't take long after that. I was sitting in the lounge, thinking about the night that lay ahead, about spending the last hours, the last days, with John. Things were starting to quiet down. I had sipped a bit of my soft drink and was contemplating eating a bite of salad when John's nurse came in, looking for me. She told me that I needed to come with her right away. I got up, my friend followed. We got to the entrance to John's room. There, in the hallway, the nurse told me that John had died. She had gone into his room to check on him. He was gone.

I couldn't breathe; for awhile, I couldn't understand. John was dead. Pain cut through me. All I could feel was that I'd betrayed him, that I wasn't with him when he died, emotions compounding the pain I felt for having brought him to the hospital in the first place, when he so didn't want to be there. John wouldn't have wanted to die here, to die alone. I knew John would and had forgiven me, if forgiveness was even necessary, but I felt my betrayal acutely. I thought I had more time; I had stupidly thought that even if the oncologist's prognosis of 24 or 48 hours was optimistic, that I'd have maybe some of that time, that I might have 12 hours, that he'd die during the night, that I'd be with him, that I'd have more time. Knowing John's sense of humor, it had even seemed to me that he would choose to die on April 1st. It never occurred to me that he'd die so fast; in retrospect, I don't know why. I should have known better; the oncologist said he didn't know—I should have known that 24 or 48 hours might really meant just a few. My friend held me, the nurse stood near. Time stopped.

When they released me a few minutes later, the nurse told me I could have all the time I wanted with John. I went into his room. Everything had been unhooked and removed and unplugged; he wasn't connected into anything anymore. I looked at the body of my husband, so still, so silent—and all I could think, all I could feel, was that it wasn't him. My husband breathed. This man did not. I had spent so many weeks, so many months, listening for his breathing, paying attention to his breathing, obsessing over his breathing, and now, there was nothing. My husband could breathe.

I left his room after just a few seconds. I felt no desire to stay, no desire to kiss him, no tears. It was completely different from any Hollywood film I'd ever seen. It wasn't John, and I knew it. John was gone. The nurse was confused, and reassured me that I could stay as long as I wanted. I just shook my head and all I could think of to say was: “That's not my husband.”

The nurse accompanied my friend into the room to get his stuff—the robe and pajamas I'd brought from home Saturday morning, the aviation magazines I had hoped he'd want to read, his eyeglasses, and my coat and embroidery. I asked the nurse what would happen next; she told me his oncologist would take care of the paperwork when she came in the next morning, and that his body would go to the morgue and they would wait for the funeral home to contact them. There's no rush, she said, take the time you need. She then asked me if I wanted to donate John's organs—his corneas, really. I told her that John believed deeply in the importance of organ donation; he and I had talked about it so many times during our marriage, that I knew that he would want to do this. John always said to me, “They can have anything they want; just don't let medical students have at my body.” He so hated doctors. After I'd said that John would want to do this, the nurse frowned and said: “Say no.” I didn't understand. She repeated—say no. If you say yes, the doctor will call you tomorrow and ask you a long list of absolutely inappropriate questions, questions that will hurt you, questions that will cause you a lot of pain. You've just lost your husband; he died so quickly, you're in so much pain, you don't need any of this. There is no guarantee they'll even want his corneas. Say no.

I was paralyzed; I couldn't think. I knew that John would have wanted this, yet here was his nurse telling me not to do it. Nothing made sense. My friend looked at me and said, “Claire, say no.” I couldn't understand what she was saying either. She knew John, she knew us, this didn't make any sense. She tried again: “Claire, dis non. John ne voudrait pas que ça te fasse du mal.”Footnote * That broke me out of my incomprehension. The dear friend I trusted completely, this woman I had loved working with for so many years, was trying to tell me something. “No,” I said. The nurse nodded, looking relieved. I could only feel that I had betrayed John again, but in this decision, he couldn't tell me what he wanted, he couldn't contradict me, we couldn't debate the relative merits of each position. I was alone. So much felt truly, completely, excruciatingly, over.

***

About two and a half weeks after my husband's death, a hospital fund-raising letter was delivered to our house, addressed to John. The letter asks John to make a financial donation to the hospital, in recognition for the excellent and compassionate care he has received during his recent stay—in order, it says, that such a quality standard of care can be guaranteed into the future. I think about responding, about pointing out that my husband died at the hospital, that his “recent stay” had ended in a way that neither of us would have chosen, that the computer-generated letter asking him for a donation is callous and almost cruel in the pain that it causes me—but mostly, I want to scream that while he was at the hospital, almost no one had asked, or cared, about the man he was beyond the illness that ravaged his body. Instead, I throw the letter away; I don't have the energy, it hurts too much, and nothing will change anyway. Without John to protect anymore, there doesn't seem to be a reason left to fight.

***

Five and a half months after John's death, the complete demoralization and despair of his last days does not exert the same hold over me. The pain, the sadness, and the tears persist, of course, as does my anguish in the face of a system that so completely erased the essence of my husband—who he was, what he was—at the moment of his death. The “what ifs”—and there are many—continue to be my constant companions. John, however, was a very special man, and I know, as I've known since his death, that he would want me to do something to help me to move through these searing emotions.

This narrative of my experiences as John lay dying wrote itself, once I was finally able to write it. The story of getting to that place is another one altogether, but once I could write, the words came pouring out. Unlike the academic analyses I normally engage in, my heart bears far greater responsibility for the words on these pages than does my head. This is as it should be: After well over two and a half decades of marriage, John's presence remains profoundly etched in my heart, and I am convinced that my words are also our words, and that, in important ways, my narrative belongs to us both. John was an avid and constant reader; our house is filled with books—probably more of them his than mine. He read most everything I wrote. That I was able to write this narrative, and that I needed to do so, is, I'm certain, because John believed in the power of the written word, and loved the beauty of words expressed honestly on the page. In giving voice and shape to my experience of my husband's death, I hope to restore some of the essence of his humanity, to provide a glimpse into the man I love, the man so many could not—or would not—see. There is no denying my overwhelming grief, but the depth and beauty—unspeakable, beyond words—of the love I was so very blessed to have had in my life for so many years is stronger, more powerful, and in the end, I know, far more enduring than the pain that accompanies me now.