Passover 2020

A previously unpublished pandemic post

I wrote this post during the pandemic, and for reasons I’m still not 100% certain about, I didn’t publish it. My guess is that I delayed it until after the holiday, and the day after our family seder, we discovered that my sister Shana was dead from Covid. I imagine I felt uncomfortable writing about Mike’s illness, considering his survival “sufficient” in a world where it felt in some ways like it came at the cost of my sister’s life. I know that’s not how the world works, Shana didn’t die so that Mike could live another nine months. But my sister died, and my husband clung to life, and the pandemic just got worse.

I’ve been thinking about this a lot for a few weeks, since March 13, and the internet’s now-annual round of “X number of years ago, today was the last normal day…” It wasn’t a normal day for me. No day had been normal for a long time.

Tomorrow is my sister’s yartzheit as it falls on the Jewish calendar, the 13th of Nisan. On the secular calendar it lands in eight days.

Passover was the time Shana and Mike enjoyed each other’s company best. They would drink and joke and laugh, and I lived for those moments. I had two people in my life who, for very different reasons, I loved more than almost everyone else on earth and who I didn’t feel I had a right to believe should have lived as long as they did. And at Passover, they were simply family. My sister and my husband, loving each other like siblings should, sharing their own little private traditions. I always made the effort to seat them near each other, no matter what else was going on. And now, every year, when I put together the seating chart for the seder, I can’t help but imagine their laughter.

This is a post about Mike. But I cannot read it as anything other than the last thing I wrote before I knew my sister was dead.

Why is this night different from all other nights? As I write this, I am sitting in the dark, watching the final scenes of “The Ten Commandments” on the television of Mike’s hospital room. Tomorrow marks three weeks I’ve been living here, with only a few excursions into the wider world. When this posts, Monday, we will be into the fourth week.

This has been perhaps the most difficult experience of my life. It is one thing to watch a loved one go through something terrible and frightening. It is another thing to do it alone, isolated from your support network. And it is still another to do so while the world seems to crumble outside the window, while tents for testing go up and the sirens shriek past more frequently and the businesses shutter and friends take to the internet in fear and anxiety as they lose their jobs and health insurance. It is another to do it in the most dangerous location you can be during a pandemic. It is another to do it when the treatment your loved one needs gets less and less accessible as the disease shuts down options and resources before you can get to them.

We should be in an ICU. The ICU is more dangerous than inadequate precautions or care. We should have radiation scheduled. A confirmed case of COVID-19 has shut down the radiology center.

I should be at home, with my children, getting them started with e-learning, helping them navigate their new technologies, keeping their schedule and comforting them.

Instead, I’m watching him breathe. I’m monitoring his symptoms. I’m Skyping into an occasional board game with the kids. I’m sleeping in ever more uncomfortable quarters, under ever-increasing restrictions.

Why is this Passover different from all other Passovers? Every year my family passed the Purell around the table, joking about the modern conveniences involved in our ancient traditions. This year I will be using my great-grandmother’s handwashing bowl, because hand sanitizer is too scarce to waste. Every year my vegetarian family puts a scorched beet on our seder plate, to represent the pascal lamb. This year, if there were something to paint on my doorpost to make this plague pass us by, I would. Perhaps instead of the pascal lamb, I’ll scorch a surgical mask.

We are navigating medical situations that are completely unfamiliar, and we are doing it in the worst conceivable conditions.

When the fog comes off the lake, I see it roll in like DeMille’s angel of death. The streets are not empty enough, but everyone on the streets looks like plague fodder.

If I were going to make a guess at who the Pharoah is intended to free, I would say it’s the minimum wage workers, the subsistance workers who make our whole country, our whole world, go, but work for pennies. Migrant farmworkers. Grocery store workers. Sanitation workers. Delivery workers.

I would say the self-appointed Pharoah and his advisors should give up the spoils of Egypt to ensure the end of this plague.

The workers who clean the elevators that lead to Mike’s room, who bring him food, who cook the food the whole hospital’s staff eats, who come here every day not because they are saving lives, but because lives can’t be saved without those lowest items in Maslow’s hierarchy of needs. They deserve better than this.

For Passover, we eat the bread of haste, the bread of affliction. All over the internet I see people baking the bread of boredom, the bread of endless hours to fill, the bread of anxiety. “Why is this night different from all others?” asks a boy at Moses’s table. The final plague is ravaging Egypt. The sounds of screams echo from the middle distance. Crashing chariots. Wailing mourners. “Death is all around us,” Miriam wails. Commercials come on, a teaser for the news, Illinois COVID-19 cases have topped ten thousand. In the middle distance outside the window, another ambulance siren wails. The hospital campus we’re in has the most COVID-19 patients of any hospital in the state.

On all other Passovers, we recline. The children in the family go from room to room, gathering pillows to place on the chairs in white pillowcases. But tonight, I’m not allowed a pillow for the stiff bench where I lay. There are not enough to spare.

It is not bitter herbs I eat, it is protein and granola bars, and the occasional bag of chips or hard-boiled egg. When I’m permitted to run to the cafeteria my waistband feels loose, but camped out in less than 200 square feet, most of that full of medical equipment, I’m not exercising. I can’t even pace. If I’ve lost weight it is shedding off me like a virus while I sit and nibble and watch the fog roll in. I try to practice mindfulness. Five things I can see, four things I can touch, three things I can hear, two things I can smell, one thing I can taste. Everything I can see is what I’ve been looking at in these 100 square feet for three weeks. Everything I can touch is rumpled and dirty, or has been touched by the countless hospital staff members coming in and out, always sanitizing their hands. I hear shallow breathing, sirens, medical alerts. I smell the everpresent scent of soiled laundry and disinfectant. I taste tears. But I am mindful. I am grateful.

If they had done a successful surgery but I wasn’t permitted to stay in the hospital, diyenu.
If I had been permitted to stay in the hospital but didn’t have anything to eat, diyenu.
If I had something to eat but had not been able to teleconference with Mike’s doctors about his care despite the virus, diyenu.
If we had been able to teleconference with Mike’s doctors about his care but not with the children, diyenu.
If we had been able to talk to the children almost daily, but did not have access to a rehab facility, diyenu.
If we had access to a rehab facility but it wasn’t equipped to diagnose COVID-19 when he became symptomatic, diyenu.
If he didn’t have COVID-19 but he did have blood clots in his leg and lungs, diyenu.
If the clots moved to his lungs but didn’t give him a heart attack, diyenu.
If the clots didn’t give him a heart attack but the medicine might make his brain bleed, diyenu.
If the blood thinners didn’t make his brain bleed, but did impact his cognition and healing, diyenu.
If the medicine affected his cognition and healing, but when we leave the hospital there will be other options, diyenu.
If we can leave the hospital but his new conditions and new medicines put him at extreme risk of dying from COVID-19, but our house is safe and everyone is complying with orders to shelter in place and reducing risks so that if he has a blood thinner complication or a chemo complication or any kind of issue at all and needs to go back to a hospital it won’t be overflowing with contagious COVID-19 patients...

I know I should say another diyenu, but it’s hard when my children are so far away. It’s hard when you’re in the thick of it. It’s hard to know when there’s enough to be grateful for, knowing there’s something else coming right behind whatever the thing is right now.

Anne Baxter, the Queen of Egypt, is beautiful in her denial as she holds her dying son in his bed. He is dying slowly, as death sweeps through the streets outside the palace, as the number of the dead rises higher and higher. Sometimes you can’t look out the window at the fog. Sometimes all you can do is hold the person you love when, at midnight, there is something clearly wrong. Their respiration is high. Their blood pressure is low. They are disoriented and exhausted. And you don’t have a pillow where you can rest your head, but you weren’t going to sleep anyway. Not yet. Not tonight. Because why should this night be different from every other night at the hospital?

During other Passovers, we say, “Next year in Jerusalem.” Tonight I hold my breath and hope, “This year, at home. For at least one night, unlike all other nights, let us be together.”