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My sister has been diagnosed with terminal cancer—at 44, with children.
This came out of the blue. She has not had previous cancer. The cancer was missed, her doctor was supercilious, her boyfriend finally took her in to the emergency room for pain after he became fed up. She received her first scan there, only a few weeks ago.
I am soon to be scanned for the same cancer. It doesn’t matter the result as I’m so tied to my sister’s case I feel already I am in the same position. I wish with all my heart it were me, not her. I want to take it on for her.
I am also terrified of the change in family dynamics this will bring. I would like to maintain a distance from my distant mother, but that will be harder. I very, very much want to maintain a distance from my whole family (physical and mental) but in good conscience cannot go on doing so. I guess that is a separate concern.
So much of your advice — really the whole idea of how Americans and almost everyone lives their lives — is predicated on the thought of a future. Working toward the future. Self-improvement, hoping for true love, working toward an end of some kind (job promotion, writing for publication, more money, etc.), even saving for retirement. The hope that this or that can be overcome. That’s all anyone thinks about. That’s all life is. The hope of the future.
Now, in my own sadness and in hers my thoughts have changed: no more caring about self-improvement, about makeup tricks. No more new clothes or consumerism because the items cannot be used, the clothes cannot be worn. Who cares what you wear? Who cares about getting skinnier, fatter, diet tricks and tips, organic eating, all the shit and noise and drone of the stupidity of life in America.
What about when that way of life is wiped out? Gone? How do you radically change your thinking about how to live when the end is staring at you? I know all the Buddhist live-in-the-moment, mindfulness junk. I don’t want to hear that.
I am gutted and feel I cannot go on (ironically).
After my dad died, I couldn’t stand the sound of the television or the radio, the chirpy lilt of news anchors and DJs and voice-over actors, babbling about the latest celebrity gossip or the next big sports event or the low, low prices on Chevy Trucks at a red-hot summer sale. There was no space between their words, no moment where the sadness was allowed to seep in. Even when I walked around in the world, feeling like I was underwater, everything slowed down and painfully clear, the people around me were still moving forward, blindly believing in their own endless progress, their endless reinvention, their endless possibility. We were all tricking ourselves. Things didn’t get better and better. Love didn’t save anyone. We were all insignificant, invisible, less than nothing. As my plane took off from San Francisco, I remember staring out at thousands of tiny houses and thinking about all of the tiny people inside, whose lives seemed pointless and hopelessly sad to me, just ants scurrying around, busy, busy. One ant dies and the other ants are sad, but then they’re back to scurrying the next day. It all added up to nothing.
I don’t know that I’ve ever shaken that perspective completely. The strange indelible stain of a catastrophe stays with you. It alters your DNA. There are always cracks in the pavement after that. A perfect, sunny, wide-open day with nothing but joy on the horizon still feels a tiny bit bittersweet. But that bittersweetness is a kind of gift that keeps your vision from becoming clouded, and keeps you from overvaluing pointless, empty things.
And right now, that jolt, that feeling that the whole world is ending, serves a very specific, concrete purpose: Your sister is here now. You are being called to show up for her, to spend time with her, to help her through this. No matter how gutted and lost you feel, that’s what’s on the table. Even though you’d like to take her place, you can’t. Even though you’d rather crawl into a hole than face this reality, you can’t. You don’t have a choice. This is where you are. You can see clearly, at last, how fucked everything and everyone is. But you can also see clearly what is being asked of you. You know how important this is.
When you’re in a lot of pain, your heart might also close a little. It could take a lot of hard work to pry it back open. When you’re devastated, the whole idea of mindfulness feels like a mind fuck, mostly. Breathe in this unthinkable moment, breathe in this terrifying reality, breathe in this impossibly lonely feeling? How the fuck do you do that?
I love what Matt Zoller Seitz wrote about losing his wife, Jen, ten years ago. He described how, in dealing with his unthinkable loss, he kept trying to skip straight to some happy ending over and over again. Here, this will fix it. Get these kids a mother. Here, this job will fix everything. Happy ending! Done.
I’m so prone to that kind of magical thinking. But skipping to the “happy ending” is actually a way of closing your heart or running away. It’s a way of believing in some shiny, perfect place where pain is erased, and everything remains stagnant and “HAPPY” forever and ever. It’s a way of skipping life. It’s a way of ENDING EVERYTHING.
Many, many people, when they’re facing an impending loss or when they’re living in the wake of one, power down their ability to feel. They become robots. “This is tough, but I can’t think about it now,” they say, or, “That was tough, but I’m over it now.” Sometimes what they really mean is that they’re over EVERYTHING. They don’t want to be alive and feel pain anymore, so they are half-dead, but they’re still haunted.
So how do you stay in this place instead, with your heart open, when there might be no future for your sister and it feels like there’s no future for anyone, really? How do you put your clothes on in the morning and look in the mirror without screaming? How do you show up for her, when it feels like you’re dying inside? How do you keep pretending, keep tolerating the blindness of everyone and everything around you, keep listening to the chirpy babbling of empty distractions on the radio and the TV and the internet?
You just do. Even though you’re gutted, even though you feel like you can’t go on, you go through the motions. You’ll get up in the morning and you’ll wash your face and you’ll cry and you’ll have to wash your face all over again. These are not hopeful words. This is just what will happen. You will put on some makeup while thinking about how pointless it is. You will get in your car and you’ll drive to see your sister and you will see your distant mother and your disappointing, awkward family and you will say mundane things as you bathe in pain. You will try to figure out what she needs, and you’ll try to be that thing. You will be frustrated by what she needs, too. You’ll think about how differently you would be doing this, if you were the one doing it. And then you’ll feel guilty. And then you’ll feel angry at your family. And then you’ll feel sick inside. All of it will feel impossible. And then one day, you will be sitting in some hospital cafeteria and you’ll cry with 50 people seated very close to you, lit by neon lights, and you’ll think, “I can’t be here, doing this.” But you will already be doing it. Then you’ll go back up to face your family and say more inadequate things and bathe in more pain.
This is how life will be for you. You can feel hopeful or feel devastated or feel lost or feel angry or feel nothing at all, but this is how it’ll be. You will slog forward, knowing all the while that there is no forward, not really. You don’t have a choice to sacrifice yourself. You don’t have a choice to run away. You’ll have to survive and tolerate a lot of terrifying things.
You won’t ever shake free of the darkness that you’re facing. It will stay with you. It might not make you better. But you will have more. You will be bigger. You will be stronger and maybe also angrier. And your heart might be half-closed for a while, even if you try very hard to avoid that fate.
Sometimes when I write this column, I point people toward the future. Hoping for love isn’t really the goal, so much as believing in love, believing that you will love and be loved deeply. Hoping to reengineer yourself until you’re better and better and more worthy of love and wealth and happiness isn’t really the goal, so much as believing in who you are right now, exactly as messy and incomplete and lost as you are in this moment. I don’t believe in the relentless forward march, and I don’t even believe in inner peace, exactly. I know I can’t manage it myself. I believe in taking in the full force of whatever is in front of you, whether it’s a scrap heap of repeated failure or a broken marriage or an impending loss so terrible that you’d do anything to stop it.
I believe in letting the darkness in. That doesn’t mean that everyone can do it. Everyone is different. In order to survive this, you might have to turn into a robot and then you might have to smash all of your robot parts to bits in therapy after that. You might have to be a messier mess than you are now. You might have to adopt a sunny outlook, and ignore anyone who is not adequately sunny. You might have to turn your back on anyone who can’t have a conversation about darkness. You might have to isolate yourself at some point. Your friends might pull through for you. Your friends might disappoint you. You might realize that you have no friends. You might find that you love your family more than you ever thought you could. You might find that you’re more angry and disappointed with them than ever. One thing is certain: You won’t be able to keep your distance from them. Give up on that right now, because it’s impossible under the circumstances. Brace yourself for that storm, because it’s coming whether you like it or not.
The bottom line is that you can’t skip this. I hate to sound like an Army drill sergeant, but this shitstorm is part of the bargain of being alive. Everybody gets a big serving of living nightmares. Some people get more than their share, and some people get fewer, but eventually, we’re all crawling over sharp rocks on our fucking knees. The pain is unthinkable. Why keep moving?
All I can tell you is that my shredded knees made me tougher and also weaker, bigger and also more fearful. I could handle anything after that, and then sometimes I couldn’t even get out of bed. I do think that the darkness I carry around with me gives me strange improvisational skills, an ability to generate hope from a tiny patch of sunlight, an ability to milk some kind of sustenance out of a bad afternoon feeling lonely and sorry for myself for no reason at all. Every now and then I stumble on the saddest words in the world and I cry for a solid five minutes, even though I know this world of ants doesn’t add up to much. One part of me believes that when we die, we’re dead and gone, and another part believes that the spirits of the dead will dance for us and bring us sustenance when we have nothing but salty tears in a neon-lit hospital cafeteria.
The future might be worse than the past. And it might not exist at all. But there are layers and layers to this moment that we can just barely grasp, and the less we resist the darkness, the more we can feel. Somehow, by making room for the horrors inherent to survival, life feels more valuable and richer and more gratifying.
But we can’t escape this moment. We can’t skip this part and go straight to some imaginary good part. Our suffering multiples when we try to do that. There is no next big thing. The darkness and the sunshine go together. Love and fear walk hand in hand. Almost everything comes out of the blue. We will wake up and wash our faces and stare in the mirror and we might scream, but after that, we will resolve to savor every moment with someone precious we’re about to lose. We will resolve to keep doing our best. Sometimes doing your best involves laughing in the face of the newest shitstorm. Sometimes doing your best means knowing that weather and sports and diets and sales are just smoke and mirrors. Sometimes doing your best means caring way too much about things you have no control over, or caring way too much about people who are about to disappear forever.
You are gutted. This is the end of everything. Maybe there is no tomorrow. But if you make sure not to skip over this part, you will feel things you’ve never felt before. If you stay right here, and live right here, the world will grow bigger and clearer and more terrifying and more beautiful than it’s ever been before. That’s what happens when you refuse to look away or protect yourself from what’s right in front of you. You can take in the full scope of what you have and what you stand to lose. You can see past the jibber-jabber and the noise and the empty shiny distractions. You understand how little time you have left. You are finally wide awake.
It’s excruciating but it’s also a kind of beginning. Everyone lands here at some point. Some of us land here a day or two before we die. Some of us land here when we’re very young. We are the unlucky ones, but we’re also the lucky ones, because we get more than a few hours to see the world through clear eyes.
Let the full force of this moment knock you over if it wants to. You will keep breathing. You will keep waking up and washing your face and showing up where you’re needed. Like it or not, you are probably going to survive this. You will have to keep going. You will keep your eyes open. You will do your best.
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