Four years of avoiding

I picked up my sister-in-law this morning just before 8 a.m. We drove to a local mall where we walked for about 90 minutes. We talked about a number of different things as we paced along–her father’s health, the weather, the economic climate locally–but there were two things we didn’t raise at all, though I am sure we both thought about them. She is going in tomorrow for a biopsy of a suspicious lump. I am going along to keep her company. That came up–but only briefly–when I dropped her off.

It was raining this morning. It was raw and miserable. She commented on that and I said the weather suited my mood. That was as close as we came to what happened four years ago today. But it was the first thing in my mind when I got up this morning.

Four years of traditions

I drove home, showered and shaved. I had soaked some raisins in cherry brandy overnight in preparation for putting together a pair of fruitcakes today. Jane and I made some every year from my old family recipe. I’d pried it loose from my parents a couple of years after I graduated from college. I may have the only copy of it that still exists. The world has stopped caring about fruitcake. And given how bad the store-bought ones were, I’m not surprised.

Making a homemade fruitcake is not for the faint of heart, however. The ingredients can be–some of them–hard to find. And most of them are not cheap. Worse, the ingredients have to be prepared in five different bowls before being combined–and the final mixing requires a strong arm. There is comparatively little flour in a good fruitcake–just enough to bind the fruits and nuts together.

Four years at a grave

The baking takes about two hours in a slow oven. While the heat transformed the sticky batter into something edible, I made my pilgrimage to the cemetery. I took a Christmas basket with me made up of fake Poinsettias and real pine cones and pine branches. It joined the wreath I had placed there after Thanksgiving. There was a soft rain falling and a light breeze. Other than me, the cemetery was empty. Not even the birds were interested in being out there today.

I didn’t care. I wasn’t there to talk with the living or listen to the birds. Four years after Jane’s death, I still hurt–I’m still angry–I’m still frustrated. Of all the cancers she could have had, why did it have to be this one–the one without a cure? The one with endless diarrhea? The one with endless gas and bloating? The one that destroys your heart? Part of me knows the answer to those questions, but the answer brings no real comfort.

Four years of growth

There is some lichen beginning to take root on the stone that marks the grave she and her mother share–that eventually her father and sister and I will share. Part of me thinks I should clean it off come spring. Part of me thinks it gives the granite more character. It is most visible on cold, wet days–like today. It is a pale green against the dark gray.

I left three kisses and four touches on that stone as I left–as I do on the tenth of every month, on every Saturday–and on every other one of the important days on our calendar. Right after she died, I tried to go there every day that I could. I took flowers and small stones and other decorations with me. Those visits tore my soul to pieces.

Four years of painful days

Sometimes the visits I make there still do. Her birthday this year–she would have been 60–and our anniversary–our 25th was September 2–were especially difficult. Today was easy by comparison, but still brutal.

I came home, took the fruitcakes out of the oven, then made bread. Jane taught me about single-rise yeast early in our marriage. It takes what was once a day-long chore and cuts it back to a couple of hours. I’ve been experimenting with a new bread recipe of my own devising. It makes a very fine-textured wheat bread that I like for toast and for sandwiches. I played with the recipe today, scalding the milk and putting just a touch more butter and honey in the mix. It seems to slice a bit better in its freshest state this way. But the weather could be playing a role as well.

Four years of creative tension

Jane is dead. She died four years ago today. Part of me died that day, as well. Sometimes I feel all my movement is just the dying inertia of our life together–that my body is still moving because it does not know it is dead yet. Other times, I know that is not true–that I move forward every day because I still have work to do in this world–that I still have things to discover and invent and experience.

There is this constant tension between those two things. There is constant tension between observing tradition and creating the new. There is constant tension between living and dying. There is fruitcake–and there is bread–and both have a place in this life I am living.

The impact of the living

When we think about death, most of us think primarily about our own death. If we think about it in terms of its impact on others, we think about whether we have provided for our loved ones sufficiently through insurance or inheritance, whether anyone will miss us, whether we have done anything worth being remembered for in the larger world.

…what the Hell do I do now?

But we don’t spend much time thinking about how our deaths will really emotionally affect the people who love us.  Part of it is most of us are pretty self-centered when we think about death—when we think about it at all. In the United States, we are almost pathological in our efforts to avoid death and avoid talking about it. More importantly, however, none of us wants to think about the psychic pain our deaths will inflict on those closest to us. Contemplating our own impending death is hard enough. Contemplating its true impact on others under those circumstances is beyond most of us.

The proper focus excludes us

Even if we know someone who is dying, our thoughts are rarely on those they are leaving behind. Instead, we focus on the dying person’s last days and hours. The soon-to-be-mourners wrestle with their coming loss in the sickroom, but largely try to put up a brave front for the soon-to-be-deceased in order to ease that person’s movement from life into death. We do what we can to ease that passage, telling them they will soon see the loved ones they have lost, that they are going home to the heaven they believe in, and we ply physicians and nurses with pleas to ease the dying person’s last hours with the latest concoctions of modern medicine.

…most of us are pretty self-centered when we think about death…

Then, the breathing stops, the heart shuts down, and the brainwaves vanish.

Every death is different

Sometimes the death is sudden. Sometimes it comes with agonizing slowness. Sometimes there is time to say good-bye—to say all the things you want to say to each other. Sometimes, there is only a phone call or a knock on the door, and all the things you wished you had time to say can never really be said.

We do what we can to ease that passage…

Whatever it was that animated the body is gone. The survivors make the necessary phone calls to the relatives and friends who could not be at the bedside. They write eulogies, finish the funeral arrangements, and prepare for the wake and the burial.

Ritual thinking, ritual words

Those rituals are supposed to give the survivors comfort. We go through the receiving line and offer our stock phrases: “I’m sorry for your loss;” “At least they are no longer suffering;” “I’m here if you need me;” “Anyone as good as they were has gone straight to Heaven;” “Call me if you need anything.” Some people bring food by the house in the immediate aftermath. Others send flowers or sympathy cards.

Sometimes it comes with agonizing slowness.

The night Jane died, I called her sister and father. I’d told them not to come to Boston on that last day because I wanted them to remember Jane as she was the last time they had seen her. In retrospect, that may not have been the right thing to do—but it seemed so at the time. I asked them to call Jane’s aunts, uncles and cousins.

And now you know

Then, I called my father. He had lost my mother just 10 months before after a long struggle with Alzheimer’s. “And now you know,” he said, “That there is nothing anyone can say to you that is going to make this feel any better.” That may sound cold and heartless, but it was the truest thing anyone said to me in the ensuing months—and somehow there was more comfort in that than in all the hugs and condolences that followed. My father was telling me the one thing I really needed to hear—that the bleak greyness that had crept around me for weeks and now shrouded everything, was not going to go away because of what people said to me, no matter how well-said or well-meant. Jane was gone—as my mother was gone for him—and nothing was going to bring her back to me this side of the grave. If I were going to live—really live—again, I would have to accept that reality and deal with it: there was nothing anyone could say. There were things they might be able to do that would help me get through what I was feeling, but the clichés of the receiving line—no matter how carefully crafted—would be of no use.

Those rituals are supposed to give the survivors comfort.

Strangely, I thought at the time, I felt pretty good in the immediate aftermath of Jane’s death—so much so that I apologized to her doctors and nurses for seeming so unaffected by it. But I had, finally, given her the dignified death she wanted—even if it had been delayed from the earliest moment it might have happened. I was proud of the way she had fought her cancer, proud of the way she had moved the hospital staff with her constant displays of love and courage, proud of the way we had held each other up. I was relieved that she was out of the agony and the soul-crushing embarrassments of the uncontrollable diarrhea she had endured. She was no longer in pain and had moved on to our garden home, where she would be cared for and loved and prepared for her next flight into this world.

Think about impact of different deaths

I have slowly come to realize that this is a normal reaction for those who lose a spouse or a parent to cancer or some other protracted death. We are relieved that their pain—and our own, born in having to watch their final struggle—has finally ended. They are at peace—and so are we.

I was proud of the way she had fought her cancer…

The death of someone we love brings a stunning shock with it that numbs our souls and our emotions for a time. It lets us function in the world long enough to get through the funeral planning and participation. It lets us stand at the head of the receiving line and talk with those who have come to say farewell. It let me serve as a pall-bearer to help carry Jane’s coffin to her grave, as I had once carried her across the threshold the day we were married. It let me convince everyone that I would be fine. I even had myself convinced.

I wasn’t fine

But I wasn’t fine—and I should have known I wasn’t fine. I should have known the moment I entered the empty house the night Jane died. The quality of the silence was different—different even from the silence of the times I had come home to water the plants and pay the bills while Jane was in the hospital. It was the silence of a house that no one lives in—a silence that can only be experienced and never really described.

I should have known by the way my body curled into a fetal ball in the extreme upper left corner of the bed—as far from where she should have been sleeping as possible.

I should have known from the way I aimlessly wandered the house the next morning—finding myself now in this room and now in that with no idea how I got there or why I was in that particular spot.

They are at peace—and so are we.

I should have known from the way I could not bring myself to open the bag of clothes we had taken to the hospital for her to wear during her physical therapy in the step-down unit—the bag of clothes that we had never opened.

I should have known from the way I could not open the plastic bag that contained the clothes she had worn the day she checked into the hospital for the surgery to replace the valves in the right side of her heart that her cancer had destroyed.

I should have known from the volume I played the music at to break the silence and fill my mind with something beyond the thought that she was dead and never coming home again.

There were a thousand other things that should have told me then—and in the days that followed–that I was not OK—and that I was never going to be OK in the way I had been ever again.

It is nothing…

I’ve lost both my parents. I know what it is to find myself an orphan at 62 years old. I know what it is to suddenly be the oldest person in my immediate family. I know what it is to stand over the body of my father’s corpse. It is nothing compared to losing Jane.

We lost Jane’s mother four years before Jane died. It was the most horrible death I have ever witnessed. She spent the last three days of her life suffocating from the effects of pulmonary fibrosis. It was like watching someone drown for three days and not being able to do anything about it. I know what it is to lose a mother-in-law who has adopted you as her own son. It is nothing compared to losing Jane.

I should have known…

I have lost students I cared about deeply—every teacher does. I have cried uncontrollably for those losses. But they were as nothing compared to losing Jane.

I have never lost a brother or a sister. I have never lost a child as a parent does. I don’t know what those things feel like. I may experience the first. I will likely never experience the second. Perhaps they are like losing Jane was for me. Perhaps they are worse.

What we say and what we do

But we don’t talk about any of these things until they happen to us. Even those who have been through them only talk with others who have had those experiences. And most only do so briefly. We are like soldiers who have experienced combat. We do not speak of it to the uninitiated.

It is nothing compared to losing Jane.

We have this bizarre belief that grief lasts a year, at most—that anyone who has grief that lasts beyond that needs professional help because that kind of grief is abnormal, at best—and unhealthy, at worst.

A different vision

I work with an online grief group that has a very different attitude toward grief. We say, “The deeper the love the longer the grief.” We talk about adjusting to the “new normal” that is never the same as the “old normal” even if we fall in love again and remarry. If we were given to laughing at ignorance, we would laugh at the idea that once around the calendar through all the firsts—the first Christmas, the first New Year’s, the first Valentine’s, the first birthday, etc.—cures grief and returns one to the person he or she was before their spouse’s death blew their world into smithereens that make the task of putting Humpty Dumpty together again look easy.

We have this bizarre belief that grief lasts a year…

Our experience is that often the second run through the calendar can be just as hard as the first. Perhaps it is because of the belief that after the first go-round everything is supposed to be normal, which raises our expectations too high to be met by the reality. I can’t say. I know only that I am facing my fifth Christmas without Jane—and that it still is not right, despite putting up a tree every year and decorating the house.

People think we’re fine

One of my neighbors lost her husband to a heart attack more than 15 years ago. She tells me she still has not healed from his death. My father died 54 months after my mother. He was still mourning her death when he died. My father-in-law, over eight years after his wife died, still has not recovered from her death—nor has he recovered from Jane’s. Neither has Jane’s sister.

I know only that I am facing my fifth Christmas without Jane…

Of course, we all look fine. We do the grocery shopping, keep our houses tidy, read the newspaper, watch television, go out with friends, work—some of us even date—though I haven’t yet. I even have two friends who have remarried.

But the world is different for all of us. We do not see the world in quite the same way. We do not experience things in quite the same way.

Experienced voices

When Jane was in the hospital, I ran into a younger couple whose experience was similar to ours in some respects. The husband had gone through serious heart surgery with a long recovery and poor prospects of success. He had survived—and more.

We do not see the world in quite the same way.

He spent 30 minutes telling me what Jane needed from me—and his perspective as a patient was invaluable. But when he went off to answer a phone call, his wife took me aside.  Her role had been what mine was now.

Our point of view

“Everything he told you is true,” she said. “But he was a patient—not the caregiver—not the spouse. Our experience is different from his—and different from you wife’s. They don’t know the things that we know—they don’t know the things that we experience. They have no idea how hard it is to be positive every minute we are with them. They just expect it—and get angry with us if we fail even for a second. He threw me out one day—said I clearly didn’t love him enough if I couldn’t stay positive.”

Her role had been what mine was now.

Her husband had survived, she told me. But there were times the doctors had told her things he never heard. It was a miracle he survived—and a miracle the stress had not driven her crazy. She told me to get out and walk for a while every day—even if Jane wanted me there every second. She told me I needed to eat whenever I could—and that I needed to eat as healthy as I could.

Actions have consequences

“You’re going to lose weight,” she said. “You probably already have.  You are putting huge stress on your body—and no matter how this turns out, you are going to get really sick yourself if you don’t take care of yourself. And after the hospital thing is over, no matter what, you have to keep taking care of yourself. You have to force yourself to laugh—no matter how miserable you feel. Go rent the funniest comedy you can find—and make yourself watch it. It will help you get through the aftermath.”

‘They don’t know the things that we know…’

She was right on every count. By the time Jane died, I had lost 20 pounds—over 10 percent of my body weight in less than six weeks. The night before Jane died, I realized I had stopped walking the way I had—I was using an old-man-shuffle to get around. I was 58 years old. And I couldn’t remember the last time I had really laughed.

Complications

Of course their situation was very different from Jane’s. He had faced one major, high risk, heart surgery. It had gone well. Jane’s heart had been much more badly damaged than expected. Her surgeon had to get creative to make it work—but he had succeeded. Jane’s heart was healing normally.

By the time Jane died, I had lost 20 pounds… 

But her cancer complicated her recovery. Unlike most cancers, her tumors came with the power to create any of the 24,000 hormones and peptides the body manufactures. Her tumors had settled on serotonin, a hormone that controls digestion, blood pressure, and respiration among other things. Any operation or physical stress can kick the tumors into high gear, creating what doctors call a carcinoid attack that crashes blood pressure and respiration while causing dehydrating diarrhea.

God is an elephant

And Jane’s heart operation was the first of three procedures we would have to have done—including, potentially, one that had never been done on a patient with her cancer before.

Jane’s heart was healing normally.

I am not a traditionally religious person. I think most views of God(s) are like the three blind men sent by their busy king to find out about the elephant. The first describes it as a great snake that blows out hot air. The second calls the first an idiot and says it is a great dusty wall. The third calls down curses on the other two for their clear ignorance, for the elephant, he says, is like a rope that ascends to heaven—and when you pull on it all this smelly stuff comes down and hits you in the head.

What no one tells you

But if someone asks me for proof of an interested divinity, I point without hesitation to that chance encounter in the lobby outside the sixth floor cardiac ICU one day in early December, 2010. Between the two of them, I learned some things I desperately needed to know that I had no idea I needed to know.

I am not a traditionally religious person.

There are lots of articles and books for patients about the challenges they face as they deal with cancer or heart disease or a host of other diseases. When you visit a doctor or surgeon, they will patiently explain what the procedures are they will do and how they will affect your body. But no one explains what your role as spouse/caregiver needs to look like. No one explains to you the emotional rollercoaster you are about to embark on. No one tells you just how murky the lines are when it comes to making life and death decisions about your unconscious love’s treatment. No one tells you anything except that you need to take notes, keep the list of questions that need to be answered and ask those questions when your other half—caught up in the breathtaking moments of treatment and confusion—forgets to ask them.

Then it all changes

We and the doctors and nurses focus on the patient—as we should.

And just about the time you figure out all the things you really need to know and do that no one has told you that you need to know and do, you turn from caregiver and assistant to chief mourner and executor. And no one tells you about any of that in advance, either.

There are lots of articles and books for patients… 

If you get lucky, a social worker comes to talk with you in your spouse’s last hours when all you want to do is hold her hand and whisper final words to her that will comfort her and guide her home. You are numb and torn by a range of emotions that includes anger, sorrow, guilt, and failure. There is no one there to take notes or ask the questions you should ask but don’t know you should ask—nor how to ask them even if you do. Maybe there are other family and friends there at that moment, but they are nearly as torn up as you are.

The question

And if you are like me, you look and sound competent and aware and healthy while every dream you had turns into insubstantial dust that gets picked up by the ventilation system and blown out over the city.

You are numb and torn by a range of emotions…

One thought kept coming back into my mind unbidden over and over again: I am too young to be a widower and too old to be a bachelor—what the Hell do I do now?

 

Death took us both

To everything there is a season, and a time to every purpose under heaven.

Jane-and-Harry died December 10, 2010 just before  8 p.m. EST in the Cardiac Intensive Care Unit at Brigham and Women’s Hospital in Boston, MA. Four years later, I still have not made peace with that fact nor been able to adjust to the reality of it in any but the most superficial of ways. Jane is buried next to her mother in a cemetery in Fall River, MA. The headstone that marks the grave still does not bear the date of Jane’s death.

I haven’t forgiven myself yet…

Jane was my wife for 21 years, three months and eight days. We knew each other for almost exactly four years before we married–and we knew the day we met that we were soul mates. But the knowledge terrified us both. We did not go on our first date together for two years after that first meeting. We were that afraid we would screw things up.

Saving each other from worse than death

I’d had six relationships before Jane, if you count kindergarten and one case of unrequited love in high school. I was the second person she’d ever been out on a date with, and her first boyfriend. I was 38 when we married. She was 35.

Jane-and-Harry died…

Jane told me several times that I had saved her life–but never more poignantly than the day before I took her to the hospital for her final battles against the cancer that eventually killed her. And I told her several times that she had saved my life–and my soul–over the course of our marriage–and never more poorly or awkwardly than on that day.

Joining two souls beyond Death

 

Our wedding vows consecrated our bodies as one flesh. Our souls were joined long before that event. We both believed we had lived many lifetimes together. We both believed–and I believe now–that we were destined to live many more in the future. And we both believed I would recover from losing her very quickly because of that belief. What, after all, is the passage of even 100 years in the lives of two souls who counted their existence in billions of years? In that scale of things, even lifetimes of separation amounted to no more than a business trip.

…I had saved her life…

We were totally wrong about that–at least from my perspective. Seven days from now, I will visit her grave on the fourth anniversary of her death. The pain is not less than it was the day she died. The quality of the silence in the house has not changed. The emptiness of the space in the bed next to me at night has not changed. The absence of her touch or the sound of her voice at any point during the day or night has not changed. The missing her has not changed.

Death and loss take no holidays

All that has changed is my ability to deal with those things. They are–on most days–less debilitating than they were. For the first year after Jane’s death, I don’t think I ever slept more than three hours a night. Going to bed is still difficult, but once there I sleep for 5-6 uninterrupted hours. When I do wake up, most nights, I can get back to sleep. I rarely dream of her last days in the hospital now. Instead, I dream about the better times or have conversations with her about what I am doing and what I’m thinking about doing next.

Our souls were joined long before…

But the tears still come with little or no warning. I was in the grocery store Monday, walking down an aisle. I was looking for candied fruit for the fruitcake we made every year. I reached to pick it up and maybe the colors struck me in just the right way, but my eyes were brimming up with tears. Later that night I was watching a scene from Gods & Generals in which Lawrence is talking to his wife–and there we were. The tears came down across my face.

What Death took

Jane and I were a couple in a way it is difficult to describe to someone who has not had that experience. It wasn’t that we finished each other’s sentences or dressed to match each other–we didn’t do either one. But even separated by the length of a school, we could be on the same page. I taught English and she taught AP Biology, chemistry and physics in the same building.

Going to bed is still difficult…

One summer, I grew a beard. I’d had one when I was younger, but Jane had never seen me with one except in pictures. She liked how it looked, but was not really in love with how it felt against her face in the end. Still, I kept it to begin the school year while we saw whether it would soften. My students were stunned by my appearance and wanted to know why I’d grown it.

A story without death

“Ms Dybowski and I had an interesting summer,” I dead-panned. “The CIA asked us to come back to work and go to Afghanistan to look for bin Laden. I grew the beard as part of my cover.” Now neither of us had ever been spies or undercover agents. Nor had we been to Afghanistan. Our knowledge of any of the languages there was non-existent.

High school students can be pretty gullible, but I really didn’t expect them to swallow that whopper whole. We maintained a certain air of mystery about our outside interests and our students knew we both had a dry sense of humor that could be missed if they were not paying attention. But this tale was way over the top.

One summer, I grew a beard.

Still, they weren’t sure whether to believe me or not. Instead, since several of them had chemistry with Jane the next block, they held their peace, certain they would get a straight answer from her. Jane knew nothing of what I had told them and could have laughed at their question. She didn’t.

“Were you and Mr. Proudfoot really in Afghanistan this summer,” they asked?

“Yes,” she replied with a straight face, “And let me tell you, those burkhas are itchy.”

I’d made the story up on the spot. I’d never discussed it with her. But her answer was psychically perfect.

It took us weeks to get our students to believe we’d been kidding–and some of them are still nor entirely convinced.

Couplehood

We knew each other that well because we never made major decisions about anything without talking to each other–and rarely made even minor decisions without discussion. It wasn’t that we didn’t trust each other or were incapable of making decision without the other’s input. Rather, we wanted to be sure we had considered all the angles on everything before making a commitment. We knew that we were smarter and more observant together than we were separately.

‘Were you and Mr. Proudfoot really in Afghanistan…’

For example, we looked at more than 400 possible houses before settling on the one I still live in. We had a checklist that included the dimensions of every room as well as the shape of the yard and the position of any trees on the lot. This house was a shell when we decided to buy it. We looked at light fixtures for days and discussed the pros and cons of each one in each room before making a decision. We did the same thing with the flooring, the cabinets, the exterior and interior colors. We studied grass seed and foundation plantings and landscaping–even lawn mowers and snow shovels.

Human work

There was no such thing as man’s work or woman’s work. We both cooked–though Jane was the better cook–we both cleaned, we both mowed the lawn and pruned the trees and shrubs. I did more weeding and vegetable gardening, perhaps, but only because I enjoyed doing it more than she did. She loved cross-stitch and other forms of needlecraft–which I have no facility with–and filled the house with examples of her work.

It wasn’t that we didn’t trust each other… 

On a hot summer afternoon, we would sit under the trees and read or write or work on some craft we loved. The majority of the ornaments on our Christmas tree are things Jane had created. We would work together on finishing a piece of furniture or designing a new flower bed. If one of us wrote something, the other would play editor.

To Hell and back

Sometimes we argued with each other. Sometimes we got angry with each other. One day, Jane was so angry she told me, “Go to Hell–And come back.” Then we both laughed. “Well, at least I told you to come back,” she said by way of apology. We might go to bed angry with each other, but by morning the fit would have passed. Before Jane’s illness, we spent just one night in different beds–and that was because I was out of town for a conference. We both hated it so much neither of us ever went on an overnight again without the other.

…no such thing as man’s work or woman’s work.

Yet we had very different interests we pursued without a second thought. Jane loved playing tennis. In the summer, she would play for two hours every morning with her sister. Sometimes she would get an invitation in the afternoon to go play doubles with three male teachers we knew. While I like watching tennis, it was never a sport I had much interest in playing–and what ability I had was so far below hers that it would spoil the game for her were I on the court. I had interests, birdwatching, for example, she found equally dull and excused herself from.

Great expectations

While we were both politically quite liberal, I was more of an activist than she was. We never discussed whom we voted for after the fact, though we explored every candidate and issue in detail together beforehand. Most of the time, I think, we agreed in the voting booth, but I suspect there were sometimes real differences we simply ignored. But those differences were more a matter of the pace of change than where we wanted things to end up.

‘…at least I told you to come back…’

We both fully expected to grow old together, gradually losing our physical and mental strength over time at about the same rate. Then we would die–if not at the same moment, then close enough to it that the other would not have too long a time before joining the other. We both come from long-lived families that tend to stay sharp and healthy into their 80s and 90s. We believed we would have 30-40 years together after retirement

The argument

Two nights before she died, we had a horrible argument that left us both angry and frustrated. It started when she told me she wanted me to help her into the bathroom so she could use the toilet. She’d been on bedpans and catheters since the operation that replaced the valves in the right side of her heart three weeks before. I had to tell her that I couldn’t–and that the nurses couldn’t–that moving her that far would risk pulling out the needles that were keeping up a steady drip of medication, risk pulling out the monitors. Getting her out of bed meant putting her in a lift–and that lift would not fit through the bathroom door.

Then she told me she wanted to go home–and I had to tell her she couldn’t–that she wasn’t strong enough and that she needed to go through rehab first. “You’ll be out of here right before Christmas,” I told her–as they had told us both earlier in the day. “Rehab will take until the first of  February–and then you’ll come home. We’ll go to New Hampshire for a week–like we planned.”

‘I want to go home,” she said. “I want to go home tonight…now. I want to sleep in my own bed.” Every sentence was a breathy rasp and a struggle–as every word had been since they had put in the breathing tube in her throat so they would not have to intubate her again. It was a combination of reading lips and trying to make out the words she had not yet entirely succeeded in learning how to form. The exercise frustrated us both at the best of times.

We both fully expected to grow old together…

I explained again why that couldn’t happen. She sank into a sullen silence, then returned to wanting to go to the bathroom. I went out to consult with the nurse about making that happen, knowing already that it simply was not possible. The nurse came in and explained it to her in much the same way I had already done. The explanation just made Jane angry at both of us–and even more angry with me.

The nurse left and I tried to distract Jane from her helplessness with a Celtics game. She liked watching basketball and previous games had taken her mind off her troubles before–but not tonight. She would not look at the screen. Instead she glared at me. I tried showing her a comedy, a drama, a sit-com. She glared at me. I tried a channel that was just music. I was angry now, myself. Still she glared.

I talked with her some more–explained why she couldn’t use the bathroom like she wanted, explained why she couldn’t go home yet. Her glare said, “You don’t love me; you never loved me. If you did, you’d get me out of this bed.”

Time out

Finally, I gave up. I walked out of the room for a few minutes to try to calm myself. It didn’t do much good. I wasn’t angry with her. I understood her frustration. I was frustrated, too. We’d been in the hospital for 26 days. I’d been sleeping on the fold-down couch in her room for 22 of those days. I wanted us both to go home, but knew that was still weeks away. I’d explained it all the best I could. The doctors and nurses had explained it the best they could.

‘You’ll be out of here right before Christmas…’

But we could get up when we wanted, use the toilet when we wanted. My world was limited, for the most part, to the corridors of the hospital. But her world was limited to what she could see from her bed and the chair next to it. She felt trapped and alone and there was nothing I could do to change any of that. I could be there every waking moment of every day, but just the fact I could get up and move without help was a painful reminder of what was denied her. It made me an alien to her at times–and it had to hurt.

That I couldn’t fix that made me angry–especially at myself. Not for the first time, I wondered if it would not have been better if I had let her go the first time she’d gone into a coma. Not for the first time I wondered if I made a mistake letting myself be convinced not to let her go when she had gone into the second coma. Logically, I had made the right call on both occasions. I know that now and I knew that then. Our mantra was, “So long as there is a fighting chance, keep fighting. When there is no longer a fighting chance, let go.”

Death’s doorstep

I took a deep breath and went back into the room. “We both need sleep,” I told her. “Do you want the TV off?”

She glared at me.

That I couldn’t fix that made me angry…

I turned away and lay down on the couch. I closed my eyes and tried to sleep. I opened them. She was glaring at me. “Go to sleep, love. You need to sleep.”

Every time I opened my eyes, she was glaring at me. Every time, I begged her to go to sleep.

Death’s truth

At 4 a.m., they came in to do the overnight x-ray. I left the room while they did it. When I came back in, I sat with her until the sun came up. Somewhere in there, she softened. She still wasn’t happy. But the edge of anger was gone. In retrospect, I think she knew she was dying–that the reason she wanted to go home was so she could die in her own bed.

By 10:30 a.m, she was in a coma again. At noon they told us there was nothing more they could do. That afternoon, we began planning to take her off the oxygen and the feeding tube and everything else so she could die the way she had always wanted to. But it would be in a hospital room and not at home.

‘Go to sleep, love. You need to sleep.’

I haven’t forgiven myself yet for that final argument, for not realizing what she was trying to tell me, for not sitting up that whole night with her holding her hand. I thought I was seeing one thing when something else entirely was happening.

Jane was 56 years and 23 days old when she died of a cancer her doctor had never heard of. Her death changed everything.