MY MOTHER EVENTUALLY became acquainted with the white-walled world of procedures and all that happens—before, during, after and beyond: Hope and fear, faith and then despair, the nagging need to believe in men and the magic of machines. Or the things we say when no one is speaking.
Finally, we asked: What should we expect?
Well, we can’t know for certain, they said. But at this stage you should probably begin to consider end-of-life options.
And can you point us in the right direction?
Certainly, they said. After all, we literally deal with this every day…
This is a conversation that never occurred, and it’s one entirely too many families won’t get the opportunity to have. Having not had the pleasure, I feel I’m in a safe position to suggest that, tempting though it may be, this predicament cannot necessarily be placed on doctors or even the system. Certainly, some surgeons and oncologists are better equipped than others (on human as well as professional levels) to conduct helpful—or at least honest—discussions regarding options, percentages, and prognoses.
How much time have I got? That’s the big one, the most crucial, if feared question each patient eventually, inevitably asks. And if they can’t—or won’t—bring themselves to give voice to the concern that rips like a current through every part of their consciousness, it’s up to the family to make the inquiry on their behalf. We didn’t want to know, but we needed to know. We had the right to know, we felt.
Questions: Were we prepared to process it, whatever the verdict happened to be? Wouldn’t the doctors tell us, finally, when it was time to confront the final stage? Isn’t it our obligation to provide care and distraction, and let the professionals do what they’re taught to do?
And so on.
Naturally, these questions have no definitive answers. Or worse, the answer to each one is—or can be—yes and no. Depending on the patient’s age, or situation, or the doctor’s preference, or competence, or conscience, there is probably never an adequate formula for combining truth with commiseration. Speaking only from personal experience, the worst news you can receive is not the bad news you abhor, but a deferral disguised as an alternative.
It would be too easy to insist that our doctors were negligent or, at least, woefully indifferent. The reality, I suspect, is even worse than that. Obviously doctors don’t want to give false hope or obliterate any remaining optimism, but the rationale for their institutional code of silence may in fact have more to do with us than them. Our country’s capacity for denial is well documented; it’s more likely our ever-increasing penchant for litigation that gives them pause. When the going gets tough (and the going is always tough in cancer wards), we pray doctors can perform tasks far beyond their human abilities. Even after the surgery (successful or not) has occurred, we expect these people to become priests, social workers, and saints.
Still: you want answers. Aside from comfort and serenity, those are the hardest things to come by when you’re dealing with terminal cancer. No one knows anything and you get the sense that even if they did know—especially if they did know—they’re not going to tell you.
You learn not to talk to the stars, or you eventually realize it’s senseless to hope they can hear you. Yet enough people need to have their actions explained that we made a science of sorts out of animals in the sky, lit with meaning and the ability to govern our affairs the way the moon turns the tides.
Many of us are taught to talk to God, and some of us actually think He’s listening. Those one-way conversations are enough for enough people that we sanctify that shot in the dark, that wish upon a star. Enough people need these mysteries explicable that we invest the sky with spirits and wish them into being: They make sense out of what we can’t explain for ourselves, and suddenly the senselessness yields salvation.
If all else fails, enough people come to understand and possibly take comfort in the fact that you can always talk to yourself. You know who you are, and you’ll always hear your voice, even when you don’t want to. Even—and especially—when you’re not sure what you can tell yourself, when you’re not at all certain what you can or should or may say.
Question: How could I know that dying of cancer was my mother’s worst fear, the thing she dreaded most?
Answer: Because she never said so.
It was one thing she never talked about. It is, I suspect, one thing even families unaffected by this disease tend to avoid, equal parts dread and superstition. Cancer still retains its awesome sway on our collective consciousness through successive centuries, in part—or mostly—because of the impunity with which it has extinguished humans of all ages, races, and creeds. Cancer is always capable of getting our attention, so much so that it’s something many of us do anything we can to avoid even thinking about.
My mother talked about her mother. I vaguely intuited then, and fully understand now, that she was also talking about herself. Not just the ways her mother’s death affected her, her family, and her future, but the ways the disease might affect her, her family, and her future. She spoke about the suddenness with which her mother’s illness struck, so little time to prepare, how unspeakably voracious it became once it was inside her, how quickly she had to grapple with Death and living without the person she could never imagine Life without.
She never had to say anything directly, because every time she talked about her mother’s death she was telling us exactly what frightened her the most.
So: did she come to expect the worst? I don’t know. I think when she was first diagnosed, at fifty-four; she was shocked that it had come so soon. It hit her before she even had time to begin preparing for it, even if she acknowledged, on some level, that its presence was more a reunion than an inevitability.
Yes, you were almost in the clear, we would tell her, and each other.
Yes, the cancer did come back, but we knew that was always a possibility.
No, there’s no reason to worry it will come back again. The surgery was successful, and this chemo should make sure it stays gone.
No, I don’t think it will come back, we told her, and each other.
No, I don’t know what to hope for or believe, none of us ever said out loud.
He could feel the tears coming and he stared down at his hands. One drop clung to his eyelid, holding on for its life. Finally, reluctantly, he allowed himself to let it out. He saw his son watching him and before he could stop it, he heard himself speaking…
It’s alright, Pop. We still have our family; we still have each other.
Yes, we do, he said, embracing his son, the boy who was not quite a man, but close enough. We have each other, and that’s all that matters. I love you…
This is what he wished to say. It was what he could almost hear himself saying. But such things are seldom said between fathers and sons.
Where does it go when you won’t let it escape? Does it work its way out at night, in dreams? Can you kill it with beer, or enough TV, or the ultimate antidote, religion? Can you pray that pain away, and ask God to cast a benevolent spell, transporting those concerns you can’t afford to release? Do you just cover your eyes and close your mouth, forcing those feelings to suffocate slowly, with no chance to abscond?
It will be okay, I finally said. And when she finally fell asleep I watched her and remembered all the times she told me, patient and comforting, that it would be okay. When I didn’t want her to leave my sight in a shopping mall. Or the times I got nervous before a grade-school field trip. Or when I was sick and needed to take medicine, back in the days when it actually tasted like medicine. Or when I woke up in the middle of the night, not old enough to know what a nightmare was but young enough to call out for the one person who always came. It will be okay, she always said, and I always believed her.
My mother always told me what I needed to hear and I gradually came to understand—and appreciate—that none of these things were a matter of life and death. Eventually I acknowledged—and accepted—that it would be okay, because when your mother tells you this, she knows it’s the truth. She wouldn’t say it unless she believed it, so I believed her.
You each get older and learn to recognize the things you can control and the things you can’t. You gain perspective and experience and grasp that life goes on no matter how you wonder and worry. You might get sick and you might need reassurance but that’s all part of the process, another step in your journey. You adapt and endure because it always gets better. You remind yourself: it’s not a matter of life and death.
And so on.
So what can you say when, one day, it becomes a matter of life and death? What do you do when the person crying in the bed is looking to you for reassurance? How do you proceed when the person who always calmed you down is shuddering with fear and afraid to be alone? What else is left when actions have failed and, for the first time, even words are incapable of offering consolation? You tell your mother it will be okay. You do this because there’s nothing else left to do. You say it will be okay because you know it won’t and you still hope she’s able to believe you.
He looked upward at the uncommunicative sky and remembered what he had once read, ages ago: that the light from some dead stars, once it actually reached the earth, was millions of years old. At that moment, this seemed to signify everything awesome and immutable, all that he could grasp, but neither rationalize nor reconcile. All the things there were no answers for.
It gets very quiet while time and place and the guarded feelings that enable us to function all fall away and you concentrate every thought into one simple, implausible objective: peace. You think it and you will it and for a moment that might be forever you become it in ways you’re never able to talk about later, even if you are inclined (and you aren’t, especially). You shiver but are calm; you are entirely in the present tense yet you are also somewhere else, somewhere deeper inside that, somehow, connects you to everything else you’ve ever known.
It will be okay, you whisper, actually believing this because it’s not even your own voice you hear. You don’t know if this is you, or your mind, or the actualization of that other place (you are hazily aware) you have managed to access, understanding it’s not anything you can anticipate or comprehend even though you’ve been preparing for it (you realize, abruptly) as far back as you can remember.
It’s okay, you say, and maybe your vision is blurred or your eyes are closed, or probably you’re seeing more clearly than ever before, but now you recognize this voice and, as you look down at eyes that can no longer see you, understand, finally, that you’re talking to yourself.
All things being equal, I may be more willing to succumb to the strength or the obverse infirmity that made total belief or nonbelief an option. If there is a God then there could be order, and solace in the notion that there’s a plan that I cannot (should not?) comprehend, and that I will be reunited with my mother—with everyone—eventually. Or, if there is no God, then the universe is senseless, random, not particularly malicious (neither justice nor punishment) and the only Truth is the type that man and Nature provide: one could just move on, secure to drift into the darkening distance. But I have neither privilege: the refuge of the faithful or the freedom of the faithless.
What I have are questions. The ones I ask and the ones people ask me:
What happened to your mother?
What did she die of?
Any way you describe or explain it, it’s ultimately part of a larger equation that now equals nothing.
Life without a mother leaves one with no option but to answer questions with more questions.
You know that woman you saw in the grocery store, stocking up on frozen vegetables and paper towels, tissue and toilet paper for her family? That was my mother, too.
That woman who waved at you when you stopped to let her cross the street in front of you? That was my mother, too.
That woman who cut you off on the freeway, then flipped the finger when you laid on your horn? That was my mother, too.
That woman on TV sewing a blanket for her first grandchild, or bringing out pumpkin pie after Thanksgiving dinner? That was my mother, too.
That woman who carried you in her womb, raised you and then sent you off into the world, smiling beneath her tears? That was my mother…
Do you see what I’m saying? My mother isn’t your mother, but I see a part of her in every mother I see, just as you may see yours all around you someday, if you don’t already.
All things being equal, I might never say or even think any of these things. But all things are not equal. All things are never equal.
When you hear voices, or find yourself talking to people you’re not sure can hear you, you should cut yourself some slack. We’ve all been there—or will be at some point. We’ve all, on occasion, looked up to the clouds and wondered if there was a kingdom beyond the skies, the place some of us were told our dearly departed looked down from. Haven’t we all taken comfort from a one-way conversation we forgot to be self-conscious about? Aren’t we all, at times, unable or unwilling to entirely abandon the idea that someone else is listening?
And so: You talk. And maybe, someone listens. Anyone might be listening up there, and that’s more comfort than anything you could ever find in a church. And so: You talk. Say something, everything. Say anything you need to say to survive.
[Excerpted from the memoir Please Talk about Me When I'm Gone.]