What it’s like for me, which is worlds of pain away from what it’s like for her. Can I tell you what it’s like to watch your 42-year-old sister, mother of two little girls, to watch her…I can’t say it. I still won’t say it. And I’m not a person who can’t say die. I’m not a person who can’t talk death. Just not hers.
Can I tell you? Do you really want to know? Because a lot of people ask how she is, how we’re holding up, and I never say what’s true. That she is too much pain to sleep, that none of us sleep much anymore. Haven’t for years. That I think a lot about the fact that I don’t want to go on after – to live in the world without her, to carry the agony that will be missing her, the agony of watching her girls suffer the pain and heartache and a robbery beyond what any kid should have to take. That the staying alive, if I can stay alive, will be for them. For her. For them.
That’s what it’s like. For me. Every day knowing that this is the hardest time yet. That of all the hardness in these last years, this is the hardest; and knowing that what’s to come will be so much worse. There is no light at the end of this tunnel. That’s what losing her feels like.
I’m not naive about death. There is no bliss of ignorance. It will be awful. We will all be changed. Every time her girls have a fear or a question or the longing and sorrow I know is coming for them, it will be brutal. Excruciating. I was 29 when my mom died and every day I have new questions, new longings. I grapple with the anger of wishing I’d never had a mom because I hate missing her so much. I am an adult with capacities for language and understanding that come with a developed brain. How will those girls ever bear all this? I am so mad at God. I am so fucking mad.
Yesterday I sat on her bed and we joked (because this is what we do) about the contorting she does—the writhing as she seeks relief from pain—and how it looks like an exorcism. We called her Emily Rose and then decided on Shannon Miller, the Olympic gymnast who also had ovarian cancer. That felt more positive and less scary for Katie to think about, she said, when she’s alone at night. My whole life she was the healthiest person I ever knew. It’s trite, but true; she was the healthiest. And now the days when she’s able to walk downstairs—outside to her back deck—are the good ones. Fuck you, God. Fuck. You. FUCK! YOU!
I’m sorry. I’m tired of trying to find perspective, trying to soften it. This is not okay. Losing my parents so close together—watching them both die before my eyes—that changed me. Sunk a heaviness in my chest I’ll never lose. We watched them unbecome and it wasn’t peaceful. The last moments maybe. Maybe. What do we know? It was mostly just terrifying and heart-wrenching. Daily. And all that—all that has come before now; my mom’s diagnosis and nine months of brutal dying; my dad’s brain tumor three months later; the brain damage; seeing him stand with wet pants where my mom had stood, her own feet wet as she stood retching over the toilet – all of that was a fucking cakewalk compared to this. A fucking cakewalk.
She’s only 42. I remember my mom at 42. It’s the first age that I remember my mom being any age at all. 42. Seeing your sister arrive at 42, a forced surrender after five years of being pillaged—hearing her talk about her fears; her fear that she can’t teach her girls all that she needs to in time; that she won’t be here when they need her—that’s the very worst yet. How can it be that she writhes in pain and that’s not the worst of it? The worst of it for her—from what I can see— is the feeling that she is letting her girls down, that her leaving them is something she’s done wrong. I can’t protect her and it is killing me. What must it be like for her, feeling she’ll be unable to protect them?
I told her yesterday that I promised I would teach her girls—if ever the culture wears on them the way it does; tells them they’re not enough, that they should look different, that they shouldn’t be who they are—that I will tell them over and over that they are perfect just the way they are. That they are the perfect thems. Unique and amazing and enough. That they are always loved and always lovable. I’ll tell them what I try to say to myself when I am being the hardest on me—when I feel like nothing is right about me—“You are a child of god. As loved and lovable as any.”
Fucking god. I am not comfortable talking about God with people. Like, at all. I am somewhat comfortable with the concept of god that I’ve worked out for myself over all these years: an amalgam of parent figures; what Anne Lamott calls “the “wise aunties” (though when I’m angry, God is definitely a he). But I don’t like talking about this. It feels, among other things, unoriginal. Like illness and death, God feels distinctly singular and also not at all. Even as I find comfort in being a child of god, I don’t like feeling like a child. I don’t like feeling like a child in front of others.
And yet all I can do is tantrum onto this page. This is me on the ground beating my fists. The other day I cried at the kitchen table to Dan and then in the middle of it somehow transitioned into an impression of Sally Field in Steel Magnolias yelling and sobbing at the cemetery. “I’m fine. I’m fine. I’m fine! I’m fine! I can jog all the way to Texas and back! But my daughter can’t!She never could!”
We joke because we have to.
My sisters and I sat around Katie’s bed on Saturday. Some of us on it, some in chairs around her. I scratched her head the way my mom used to, another massaged her feet. We took turns hiding our sudden bouts of tears. And we talked—upon Katie’s bringing it up; you don’t start these conversations— about things we’d be sure to teach her girls. The conversation turned funny. (Because it had to.) We said we’d stencil pieces of wisdom on the walls of their rooms in flowery cursive. Butterflies bookending quotations like: “The best way to get over someone, is to get under someone else.”
Fuck. As I just wrote that line I thought – that’s mercy. A laugh in that moment. That’s mercy. I hear Anne Lamott again. Something about laughter being carbonated holiness. Fuck you, God. You can’t have it both ways. You don’t get to take her for no reason and take credit for our coping too. You don’t get to make her a vegetarian at age eight, the person who taught me the whys of handweights, the only person I know who feasts mostly from the veggie platter at any family event, and then give her ovarian cancer—“the silent killer” of all the things—and then take credit when five sisters sit around a bed finding some way to laugh when they all know the rest of life, no matter the joys, will carry no small amount of torture.
Fuck that. Fuck this. That’s what it’s like. Daily. Rage and terror and sorrow all day long with breaks for anxiety about all the things in life that are trivial by comparison but take up space – selling a family home, for one. Not knowing where we’ll live when it sells. (No small things except in this context. In this context both really are small. We’ll live somewhere. We’ll live.) My husband’s 50th birthday for another. I remember my dad turning 50. The first age that I remember him being any age at all.
Dan deserves to be celebrated in a way that I am just not capable right now. I would have had a party, catered with some of the treats he cooked when he celebrated every national holiday for a year—pirogies, lemon blueberry popovers, raspberry scones with fresh whip cream and coconut syrup. I would have made a slideshow and a speech because my husband is an amazing human – a guy who’s 50 years on the planet have brought so much laugher and joy and love to others. He deserves to have his 50 years marked with everyone he loves around him telling him how lucky they are to know him, to have been around him at all in these last 50 years.
But I’m too tired. I always make him a different cake every year—this is a tradition he loves—and this years I’ll probably buy one.
I feel sorry about this. So sorry. I feel like I am letting him down; that I am a letdown in his life.
I am a child of god, I try to tell myself. Buy a cake.
I recently found a list my mom saved. It was things I was asking her to do to help me get ready for the big eighth grade dance. Pick up corsage, that kind of thing. (Mercy is that this note included pleases and thank yous.)
My list today – for whoever’s out there:
Help her out of pain. Protect her girls. Help Dan know how loved and beloved he is. Save her. Just save her.
And fuck you.