The Inevitability of Hope and Change
Sunday at 4:54 pm
I am standing beside my daughter’s bed, having a serious talk about school. She has no idea what her math homework is. She has no idea where her math homework is. She doesn’t pay attention in class, instead, she watches the students’ chats go by, which are silly and confusing. “One of the boys just wrote, “chickennuggets chickennuggets!” she gasps, unable to fathom such a bizarre outcry. I tell her it doesn’t matter what they’re writing, she has to pay attention to the teacher.
She cries. She cries so often, and I don’t. No matter how cathartic it would be. No matter how my chest aches.
I am standing behind my husband’s wheelchair, panting from pushing it up the incline of the pedestrian walkway between hospital buildings. My cloth mask feels hot, I have left it on beneath the surgical mask the hospital requires I wear either on top or instead, and I know my skin is breaking out underneath. I am explaining to him where we’re going next, which he knew, of course, but has escaped him again. I repeat the order of his appointments, all nine hours of them, and push him onto the elevator as I run through my own mental list to make sure I’m telling him the right order of events.
He makes a joke, and it goes over my head. It wasn’t a good joke, of course, but I was only half paying attention to him. I don’t have enough of me these days to give my full attention to anything. I ask him to repeat his joke, and he does, and I am aware enough of his talking to understand it, but not to laugh. He laughs to himself again and I watch the numbers on the elevator rise, my heart still pounding.
I am standing beside my daughter’s bed, and she wants to know where I’m sleeping tonight. “Downstairs, with Daddy,” I say, and she nods. For a moment I wonder if she wants to sleep in the master bedroom with me tonight, as is sometimes the case, but then I think, no. She wants to know I’m going to be out of the way so she can turn on her closet light and curl up on her giant teddy bear and draw until dawn. She does this when she thinks nobody will stop her. When I’ve caught her in the past she’s squeezed her eyes shut so impossibly tight she couldn’t possibly be sleeping, and I tell her gently that she’s not fooling me and she needs to get back into bed. Tonight she might not bother with the closet light, she may just sit at her desk. After all, I’ll be downstairs. There won’t be anyone to check on her.
I am sitting in my car at three in the morning on the dirt road outside the storage area where Shana’s things are locked away. I like to go there sometimes, to park over the highway and watch the cars go by. I’m chain-smoking, which is something I never used to do. I’ll go a week without smoking a cigarette, and then it will be midnight and I’ll be awake, and the children will be asleep and overnight nursing care will be here to care for Mike and one set of grandparents will be in the basement in case of an emergency with the kids, and I put on my shoes and grab my cigarettes and drive somewhere, anywhere, and smoke. And smoke. And smoke. I don’t even like it. I don’t feel good about it. But for a few hours, nobody can make me feel shitty about my choices except me. My time is my own. I could scream, or I could cry, or I could sing, but I don’t. I smoke and watch the cars on the highway, or the moonlight on the river, or the wildlife in the cemetery. I sometimes drive between parking lots, learning the late-night secrets of my corner of the world, which strip malls are busy at 2am, which convenience stores don’t enforce mask policies, which gas stations teenagers flock to, which grocery stores are restocking.
There are deer, and skunks, and possums, and chipmunks, and squirrels, and raccoons, and bats, and birds, and insects. Occasionally I see a coyote. I never get a good enough look at them. And eventually, I drive home for a few hours rest.
I am sitting at my dining room table, and my skin feels both hot and numb as I read that Ruth Bader Ginsberg is dead. My face tingles, and I stop myself to check if I’m breathing. I call the children downstairs, Rosh Hashanah services are beginning in a few minutes. I watch my mother lay her face on the table, looking dejected and lost. When the time comes for the mourner’s kaddish, I stand. I wonder how long I will be standing, how many deaths I’ll be mourning when the overlapping years of mourning are finally over. I think that if I were to mourn all the American COVID-19 dead for a year, I would have mourned longer than all of human history. I think of Shana and feel guilty she wasn’t my first thought. I imagine her joining me for services at shul. I remember her smirking and whispering to me over a Shabbat potluck that she thought my Rabbi was cute. I imagine her laughing at the idea of his singing Leonard Cohen during her shiva.
Later, in my pajamas, I take half an hour to scroll through lingerie ads, wondering which brands Shana would have recommended to me for a boudoir photoshoot. I’m not doing one, but I know it’s a conversation she and I would have enjoyed. She would have encouraged me so much to spend hundreds of dollars on silk and lace and mesh, to feel powerful and beautiful in my skin. Then she would have told me all the ways I could lose weight, that if I wasn’t exercising enough it was because I didn’t want to, and I had it in me to prioritize better if I actually cared so there was no point complaining if I didn’t like the way I looked. I glance through my schedule. My calendar is packed, and I hear Shana’s voice. “I guess it’s not that important to you, then.” I schedule an impossible workout anyway.
I am sitting at my computer, pointlessly yelling at Trump supporters on Facebook because what other void yells back? Only the things it yells back are nonsense. People call me a pedophile, accuse me of giving LSD to children, call me a communist and a terrorist and a liar. In a fit of exhaustion and spite, I plaster my sister’s picture on the threads for all to see, my beautiful sister, dead on a gurney, shrouded in yards of red velvet I was going to turn into a Halloween costume once, preserved forever in black and white pixels.
“This is my sister,” I tell them, “and if it weren’t for Donald Trump, she might still be here.”
“It’s clear from your profile you’re bought by Soros,” they say.
“If you actually scrolled through my profile for ten seconds, all you’d see is I’ve spent the last six months trying to keep my husband alive through his brain cancer treatments,” I retort. “A paycheck from Soros sure as fuck would have helped.”
They tell me I kill babies. They call me a Jew bitch. They scream, “MAGA!” and block me.
These are my neighbors, the people in my town, the people I run into at grocery stores, who send their children to the same school as mine, who walk their dogs past my house, who own and staff the gyms and stores and restaurants, who invite me to their church fundraisers. I donate to the Biden campaign in their names.
I am standing beside my bathtub, ready to step in, dipping my toes in bright orange water that smells of lemon and canteloupe. I’m nearly out of bath bombs, now, despite the flood of such products that came in sympathy and solidarity a few months ago. The water burns and I sink down anyway. The water is so hot that in a few minutes I am pouring sweat, chugging glass after glass of cold water. It is so hot I cannot relax, cannot read a book, but I put on calming music and light candles and sit in the dark, texting or scrolling through social media until my heart is pounding so hard I can hardly breathe.
Standing up, my hair is matted against my scalp, so drenched in sweat it’s impossible to know what is steam, or water, or me. I stand nude in front of the dark mirror, not looking at myself, and my muscles are erased, my limbs are gone, there is nothing to me but a pounding heart so strong my vision shakes. I wash my face, spend a quiet half-hour in a paper mask, or painting my toenails, and guzzle another cup of lukewarm tap water. Then I sink back into the tub. I soak until the bath is cold and the night is at its darkest.
I am standing beside my daughter’s bed and she grabs my hand as I walk away. “Mommy? Were you thinking of Aunt Shana during the mourner’s kaddish?” My chest feels tight and raw. It’s not as bad as after hours of numb crying and wailing and my legs not holding my weight when I tried to stand, I told the girls my sister was dead. I remember that moment, and the flesh at my temples seems to twist and tighten.
“Yes,” I reply, letting that lone word say everything. Yes, I thought of her. Yes, she is always in my mind. Yes, I am mourning her. Yes, I see her in my mind’s eye every day. Yes, you look like her, sometimes.
“I was, too,” she says, and I sit. “You miss Aunt Shana, huh?” I ask, and she nods, her lips sucked into her mouth, her eyes wide and her forehead creased.
“Me, too,” I say. The tightness comes again.
But I don’t cry. Not in these moments. Not when the pain is at its most tangible.
Instead, I cry when my daughter comes downstairs so proud of her drawing of Ruth Bader Ginsberg after she stayed up all night knowing I was on another floor and wouldn’t check in on her. I cry when the three of them sneak up behind me and sing, “The orphanage…” I cry when I read them, “A Series of Unfortunate Events,” and Brett Helquist goes on for a few paragraphs about grief, and loss, and sadness, and although they are silly books about nonsense, these things are true: Grief isn’t linear. Loneliness is more than not being around people. Hope is its own form of pain.
Hope gouges me, over and over, sneaking up on me, wiggling its way in with every conversation. When people ask if Mike is getting better, I feel the beating not of butterfly wings, but something large and wild as a cormorant, shaking against my ribs. Is he? I don’t know. Hope wants to come out, but I have grown weary of letting it wound me.
When people ask what I expect will happen in November, I tell them I think Trump will win. Not legally, not honestly, but he has never cared about that. He will claim he has won, and there will be violence. My friends and father refer to the polls, their optimism that this fascist nightmare might be coming to a close, and I feel those beating wings in my chest, but don’t dare to hope. Broken hope is its own kind of heartbreak.
Going about my daily life, driving past the place where Shana’s things are, I imagine stepping inside, smelling her smell, and that thing pummels me again. I want to smell her smell. I want to be with her things. I want to imagine her with me, to have her with me in whatever way I can. But my mother and sister aren’t ready, and they don’t want me to go without them. Instead, I drive past and try to remember her smell, and my heart hurts, and I chain smoke.
And I don’t cry.
My hope has been broken too many times. I have tried to hold onto it and it has beat its wings against me until I was bloodied and bruised and it was all I could do to run a bath hot enough to try to soak my wounded soul. But hopelessness is a different pain. My children can smell it on me. Mike can see it in the air around me. When I despair, no mask keeps them safe from being infected by it.
I am standing next to Mike’s bed, and he is having a panic attack. Probably because of a seizure, but that doesn’t matter. I climb into bed with him, kiss him, hold him, remind him that this isn’t permanent. “Either you’ll get better, or you’ll get worse,” I tell him, knowing this is a comfort. Being together for thirteen years of life-or-death illness teaches you the deep truths about a person, and I know better than to feed him comforting lies.
“Things can’t stay this way,” I repeat.
He smiles a little, “That helps,” he says.
I sigh, sinking down against him, my chest resting on his, his hand wrapped around my shoulder. We lay there in silence, and there is no beating of wings in my chest. There is no promise of hope. There is no threat of hopes broken. There is only what there is, this. All of this. The grief, and the anger, and the sadness, and the loneliness, and the confusion, and the fear. Either it will get better, or it will get worse, but it will not, it cannot, continue as it is.
The next morning, he is able to move his fingers. He hasn’t moved them this way in six months.
The next day, we learn there’s a mass on his kidney.
I am sitting in my car waiting for the first streaks of blue to show me the horizon. I am almost out of cigarettes. I have lost thirty-five pounds. I can’t imagine Shana’s smell. I have dozens of updates from teachers in my inbox I haven’t read. I have a calendar overloaded with appointments for Mike, a few for me, and somehow also the things every family has to confront- laundry and meals and paying the bills. I know I will be tired all day. I know I will be short-tempered on the internet. I know I will be short-tempered with the children. I know I will be distracted around Mike.
Loathing myself a little for doing it, I light another cigarette. I put the keys back in the ignition. I roll the windows all the way down and feel the air on my face. Each breath of smoke feels like screaming into the void, raging against the lack of answers, the lack of understanding, the lack of direction, the lack of clarity.
Outside the blackness of 200,000 years of human history swallows the smoke. It swallows the sound of the radio.
The void says nothing, and I drive home.
You can read more about Rosh Hashannah and our chaotic lives here: Next Year Is Its Own Resolution
Read my most recent post here: Truth, Lies, and Selfies
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