A Strange Path Through Life and Death
I was lying in bed with Tim when I realized it was all true: I was dying. Soon I would be dead. No one else would be in it with me. I would be the one on the bed, and when the hospice nurse stopped by, my dearest loves would retreat to the hallway and swap impressions—separated from me already. Even while still alive, I would leave their party.
I lay under those wonderful sheets and felt cold to the bone. I began to cry, loud, then louder. I shouted my terror. I sobbed with my entire rib cage. Tim held me while I heaved it out this way, a titanic purging. I was so loud that I wondered why no one called the police to say there was a woman getting murdered across the hall. It felt good to let go, but that feeling was little. It was dwarfed by the recognition I had just allowed in. We have come to think of my cancer not just as a disease but also as a locale.
Cancerland is the place where at least one of us is often depressed: it is as if my husband and I hand the job back and forth without comment, the way most couples deal with child-minding or being the Saturday chauffeur. For me, time is the only currency that truly counts anymore. I have weathered days of chemo-induced wretchedness and pain without a whimper, only to come unglued when some little glitch suddenly turns up to meddle with the way I had planned to use some unit of time: that this half-hour, and the contents I had planned to pour into it, are now lost to me forever seems an insupportable unfairness.
Because of course any old unit of time can suddenly morph into a bloated metaphor for the rest of your time on earth, for how little you may have and how little you may control it. Most of the time, for the past three years, even my good days have given me energy to do only one Big Thing: lunch with a friend, writing a column, a movie with the kids. Choose, choose, choose. These forced choices make up one of the biggest losses of sickness. But on the other side of this coin is a gift. I think cancer brings to most people a new freedom to act on the understanding that their time is important.
Some of my choices surprise me. Time, I now understand, used to be a shallow concept to me. Now time has levels and levels of meaning. Since a month can seem an eternity to a child, then every month I manage to live might later teem with meaning and memory for my children. This totem is all I need during times when my pockets are otherwise empty of wisdom or strength.
Since I was diagnosed, I have had an eternity of time—at least six times as much as I was supposed to have—and sometimes I think that all of that time has been gilded with my knowledge of its value. At other moments, I think sadly of how much of the past three years has been wasted by the boredom and exhaustion and enforced stillness of treatment.
Not long after my diagnosis, in the pleasant offices of one of my new doctors, a liver specialist, we finally had the obligatory conversation about how I could have gotten this cancer. My biggest fear in those early days was that death would snatch me right away.
An oncologist at Sloan-Kettering had mentioned, parenthetically, that the tumor in my vena cava could give birth at any time to a blood clot, causing a fast death by way of pulmonary embolism. The tumor was too close to the heart for them to consider installing a filter that would prevent this. I knew, too, that the disease outside my liver had grown with incredible speed.
Only a couple of weeks after diagnosis, I began having symptoms—including stomach pain bad enough to hospitalize me for two days. Not in the way I could be ready in, oh, three or four months. Perhaps I was kidding myself in imagining that I could compose myself if only I had a little time. But I think not entirely. I had watched my parents die three years earlier, seven weeks apart—my mother, ironically, of liver disease, and my father of an invasive cancer of unknown origin.
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I had a pretty good idea, I thought, of what was coming. But from almost the first instant, my terror and grief were tinged with an odd relief. I was so lucky, I thought, that this was happening to me as late as 43, not in my 30s or my 20s. But I had a powerful sense that, for my own part, I had had every chance to flourish. I had a loving marriage. I had known rapture, and adventure, and rest. I knew what it was to love my work. I had deep, hard-won friendships, and diverse, widespread friendships of less intensity.
All this knowledge brought a certain calm. I knew, intuitively, that I would have felt more panicked, more frantic, in the years when I was still growing into my adulthood. For I had had the chance to become the person it was in me to be. Nor did I waste any time wondering why.
Why me? It was obvious that this was no more or less than a piece of horrible bad luck. Until then my life had been, in the big ways, one long run of good luck. Only a moral idiot could feel entitled, in the midst of such a life, to a complete exemption from bad fortune. So now my death—as a given—dominated my relationships with all of those close to me: With my two dear, dear older sisters, to whom I was doubly bonded by the shared ordeal of helping my mother die, and with my stepmother—a contemporary of mine, who had seen my father through his five ferocious years of survival.
With my best friends—who spoiled and cosseted and fed and sat with me, rounding up great brigades of clucking acquaintances to bring us dinners, saying just the right thing, and never turning aside my need to talk: especially my need to talk about when, not if. My friend Liz even went out to look over the local residential hospice, to help me work through my practical concerns about whether, with children so young, I was entitled to die at home. Above all, of course, death saturated my life with my children—Willie, then eight, and Alice, then five.
After talking to friends and reading several books, Tim and I had decided to handle the matter openly with them: We told them that I had cancer, and what kind. We told them about chemotherapy, and how it would make me seem even sicker than I looked then.
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When the timing of my death revealed itself, then we would have to tell them. From the moment of diagnosis, Tim rolled up his sleeves and went to work. In this way, we divided the work of assimilating our nightmare: I addressed myself to death; he held a practical insistence on life. It was the best possible thing he could have done for me, although it often separated us at the time.
It could make me crazy, lying awake on the left side of the bed, wanting to talk about death, while Tim lay awake on the right side, trying to figure out the next five moves he had to make to keep me alive, and then, beyond that, to find the magic bullet in which I did not believe. But I never thought of refusing treatment. For one thing, it was obvious that I owed my children any shot at reprieve, no matter how improbable.
Also, my doctors said that even the slim prospect of mitigation was worth a try. And so, Tim and I drifted into a tacit, provisional agreement to act as if … As if, while I began chemotherapy, I were in some genuine suspense about the outcome. I knew how narcissistic and self-dramatizing this sounded.
Still, it enraged me when anyone said, Aaanh, what do doctors know? I was working so hard to accept my death: I felt abandoned, evaded, when someone insisted that I would live. That was a deeper anger than the irritation I felt at the people—some of them important figures in my life—who had memorably inappropriate reactions.
My favorite New Yorker cartoon, now taped above my desk, shows two ducks talking in a pond. Screw you, I thought. You give up the life you had planned.
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This is entirely false. We began a competition, by e-mail, to see who could compile the most appalling reactions. I found my best ones in hospitals, among doctors and nurses who seemed unacquainted with—or terrified of—fear and death, who were constantly holding up the garlic of their difference from me, to ward me off even as they pretended to minister to me. At least her oddball gloom was right out there on the surface.
Perhaps worst of all was the nurse in the chemo-infusion ward, with whom I fell into conversation to while away my seventh hour of chemotherapy on a gray day in late December. I had bought deeply into the pessimism of the doctors treating me. Even most of the doctors who have from time to time promoted my optimism tend to wash their hands of it as soon as some procedure or potion fails to pan out. So I have carried what hope I have as a furtive prize.
This attitude was driven, too, by what I brought to the fight.
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I grew up in a house where there was a premium on being wised up to impending disapproval or disappointment, and there was punishment by contempt for any blatant display of innocence or hopeful desire. If I carried hope from the start, I did it in secret, hiding it like an illegitimate child of a century past. I hid it even from myself. It is in my personality, anyway, to linger on the dark side, sniffing under every rock, determined to know the worst that may happen. Not to be caught by surprise. I was raised in a family full of lies—a rich, entertaining, well-elaborated fivesome that flashed with competition and triangles and changing alliances.
If your sister was becoming anorexic, no one mentioned it.
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That my parents divided me and my sisters up between themselves and schooled us in scorn for the other team: that was certainly never acknowledged. But it married me for life to the inconvenient argument, the longing to know what was real. I worried, of course, that I was dooming myself. Americans are so steeped in the message that we are what we think, and that a positive attitude can banish disease. Was my realism going to shoot down any possibility of help? Superstitiously, I wondered.
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But it turns out that hope is a more supple blessing than I had imagined. From the start, even as my brain was wrestling with death, my body enacted some innate hope that I have learned is simply a part of my being. Chemotherapy would knock me into a passive misery for days. And then—depending on which formula I was taking at the time—a day would come when I would wake up feeling energetic and happy and very much like a normal person.
Whether the bad time I had just had lasted five days or five weeks, some inner voice eventually said—and still says— Never mind. Today is a ravishing day, and I will put on a short skirt and high heels and see how much of the future I can inhale. Two chemo cycles later, I had a CT scan that showed dramatic shrinkage in all my tumors—shrinkage by as much as half. I went right out and bought four bottles of champagne and invited our eight dearest friends to the house for a party. It was a beautiful September night and we all ate pizza on the front porch.
The kids were thrilled by the energy of it all, without quite understanding it. It was as if a door far across a dark room had opened a small crack, admitting brilliant light from a hallway: it was still a long, long shot, I knew, but now at least I had something to drive toward. A possible opening, where before there had been none. She died of cancer in January at the age of You just happen to be starting menopause, too. That was a bad decision. A puzzled silence. Yes, that is a bad sign. I asked. I was surrounded by love. Only a sleeper considers it real. Then death comes like dawn, and you wake up laughing at what you thought was your grief.
You are the entire ocean, in a drop. Unfold your own myth. Forget safety. Live where you fear to live. Destroy your reputation. Be notorious. I have tried prudent planning long enough. For the water has never feared the fire. For I have blossomed so much, I am the envy of the gardens. Anything you lose comes around in another form. So completely mixed with you, I may look separate. So out in the open, I appear hidden. So silent, because I am constantly talking with you. Dive in the ocean, Leave and let the sea be you. LOVE embraces all. Seek those who fan your flames. In your beauty, how to make poems.
You dance inside my chest where no-one sees you, but sometimes I do, and that sight becomes this art. Unbound by name and fame, he is free from sorrow from the world and mostly from himself. Seek the path that demands your whole being. Skin, blood, bone, brain, and soul. Nothing in this existence but that existence. When it tried to write love, it broke. We all have a tendency to lose touch with what we loved as a child. Something about the social pressures of adolescence and professional pressures of young adulthood squeezes the passion out of us.
And the transactional nature of the world inevitably stifles us and makes us feel lost or stuck. He just wanted to play. I used to be like that with video games. In fact, for many years it was kind of a problem. I would sit and play video games instead of doing more important things like studying for an exam, or showering regularly, or speaking to other humans face-to-face. My passion is for improvement , being good at something and then trying to get better. The games themselves — the graphics, the stories — they were cool, but I can easily live without them.
And when I applied that obsessiveness for self-improvement and competition to an internet business and to my writing , well, things took off in a big way. Because they can easily be applied elsewhere. And most people try to avoid embarrassing themselves, namely because it sucks. Ergo, due to the transitive property of awesomeness , if you avoid anything that could potentially embarrass you, then you will never end up doing something that feels important.
Yes, it seems that once again, it all comes back to vulnerability.
You have your reasons, no doubt. And you repeat these reasons to yourself ad infinitum. But what are those reasons? Sounds good. Great things are, by their very nature, unique and unconventional. Therefore, to achieve them, we must go against the herd mentality. And to do that is scary.
Embrace embarrassment. Feeling foolish is part of the path to achieving something important, something meaningful. The more a major life decision scares you, chances are the more you need to be doing it. So pick a problem and start saving the world. There are plenty to choose from. Our screwed up education systems , economic development, domestic violence, mental health care , governmental corruption. Hell, I just saw an article this morning on sex trafficking in the US and it got me all riled up and wishing I could do something. It also ruined my breakfast.
Find a problem you care about and start solving it. But you can contribute and make a difference. And importance equals purpose. For many of us, the enemy is just old-fashioned complacency. We get into our routines. We distract ourselves. The couch is comfortable. The Doritos are cheesy. And nothing new happens. None of us know exactly how we feel about an activity until we actually do the activity. So ask yourself, if someone put a gun to your head and forced you to leave your house every day for everything except for sleep, how would you choose to occupy yourself?
You probably already do that.