There Is No Paycheck for Your Life’s Work

Originally published in Human Parts

On January 27, 2014, my dad was told his leukemia had returned and would kill him. After a year of apparently successful treatment, lopsided leukemia cells slipped from his marrow into his nervous system. Once cancer colonizes the places beyond the blood-brain barrier, doctors greet you with hugs instead of handshakes. January 27 was a Monday.

On Tuesday, his doctors told him they could treat him again but the treatment would be grueling and it would buy weeks of life instead of years. They understood if he didn’t think the time gained was worth the pain he’d go through to get it. My dad, a man who barely slept because he couldn’t bear to let his eyes close on the world, chose treatment. It would begin that Friday.

Two days before checking into the hospital, he boarded a plane to meet a client who was about to pull their account from his business. My dad was self-employed and he knew that after he died, the book of business he left behind was the only thing standing between my mom and little brother and their descent into destitution. In his last days, that book of business felt as vital to him as the book of scripture he kept at his bedside.

My husband flew with my dad to that last appointment. It seemed wrong to send a dying man alone to seek a contract renewal. I guess many people spend their dying days begging for renewal, but they’re usually begging God instead of some executive in a corner office. My two men got to the airport early and stopped for lunch. They sat next to each other at a counter, a paper plate and a slice of drooping pizza each. I am sure my dad had a large Diet Coke. He tried to talk, to make everything seem normal. Good dads always try to make everything seem normal. But at one point his voice caught, his eyes filled, and he set the pizza down. Could this really be the beginning of the end? Is this what it looks like? Sitting in a harshly lit airport, wiping grease off your hands while people walk past you on their way to Vegas?

I was in the living room when they came home. My dad’s legs had stopped working during the 14 hours he was gone. Within a span of days, the cells and fibers that had moved him for 53 years failed. Wearing the suit and tie he always wore to work and church, he limped across the room to my waiting mom. They collapsed into each other.

He died 16 days later in an ICU. Bacterial pneumonia ravaged his body until it burned his heart until it stopped. I held onto his bare ankle while his breathing slowed. I hadn’t touched that part of his body since I was a toddler sitting on his foot, legs wrapped around his ankle while he stomped around the house. The client he’d spent one of his last 19 days with pulled their account one week after his death. Just in time for the funeral.

Work wasn’t the work of my dad’s life. Perfecting his New Mexican green chile stew was the work of his life. Building a family with my mom and loving his children was the work of his life. Six years after he died, I am still angry that when he had days left to live, he spent one of them scrambling to find a way for his wife and his child still at home to go on living in dignity after he died. He’d bled, vomited, and let himself be injected with caustic chemotherapy to earn every single one of those days.

I swore that if I ever found myself in his place, I’d find a way to stay off the plane and with my family. I didn’t blame my dad for that wasted day, but I promised I’d never let it happen to me. There would never be too much work to do.

The novel coronavirus has multiplied like the cancer cells in my dad’s bone marrow, slipped into our world’s central nervous system, and we’re stumbling. We don’t all have 19 days until we die, probably. But bits of our world are dying all around us. Each of us is holding onto the ankle of something beloved as it’s taken away from us.

Museums have closed and the New York Times estimates one-third of them will remain closed forever. Many of the art and history museums—the ones that collect bits and bobs of local artists and stories, that record and hold what the wider world would forget—shuttered. The people who speak for them will be silent and unheard. The museum displays will gather the dust they’ve been protected from for years. They’ll eventually be cleared up and sold out. A thousand thimbles will be stripped of their meaning.

Many independent bookstores are already dark. Powell’s, one of the most famous bookstores in the U.S., let nearly their entire workforce go. If the sacred shelves of Powell’s can’t make it, what corner bookstore can? Bakeries have cooled. Cafés and coffee shops are frozen in time. There’s no clear path to reopening for many of them. They are the landmarks that have defined our neighborhoods, and I am not sure I’ll ever be able to find my way home without them.

Our children are missing their last year of high school. They cannot hold their friends one last time before running into adulthood’s rough and conditional embrace. Families are missing weddings years in the making. We cannot witness beginnings. We cannot witness ends, either. Quarantine keeps us from holding onto the hands and arms and ankles of our loved ones as they move from this world onto the next. Funerals must go on without mourners.

Breadwinning in our society is impossible if it must be done at the same table where the babies are eating the bread.

There are things we can do. We can donate to our local museums. We can preorder books from our independent bookstores. We can buy gift cards to our favorite cafés. We can call the people we can’t touch, and pray for the people we can’t call. But I’ve sat with dying, I know its look and smell. I can tell you that some parts of our life — no matter the treatment we administer now — are already claimed by their end.

In this, the last days of so many things we love, we must all be worried about the work that is not the work of our lives. We are losing jobs, clients, childcare, and the health insurance we need once we join the ranks of the majority who will get this virus. Breadwinning in our society is impossible if it must be done at the same table where the babies are eating the bread.Mothers are taking leave to care for children while their male partners continue to work behind closet doors. Those of us without partners or children feel the isolation of a society that doesn’t know how to operate without the structure of a workday. And, of course, there are those who cannot do their work from kitchen tables. They are at the mercy of missed mortgage payments and health insurance that becomes more expensive once there’s no way to pay.

I don’t know that we’ll ever be rid of cancer or pandemics, but we can rid ourselves of the things that rob us of the chance to experience them humanely. A work-centered culture that requires us to produce when we should weep must end, along with everything else that’s ending right now. If you’ve got your hands wrapped around its legs, let it go. We don’t have to be afraid.

We must enact policies that value personhood over productivity.

It sounds a bit woo-woo to say that death leads to life, but it’s true. When we let our old workways perish, we can refocus on building an equitable economy. A new economic infrastructure sustained by safety nets, accessible insurance, and ideas like Universal Basic Income. We must expand the definition of productivity. We must enact policies that value personhood over competition. We must be able to work from kitchen tables, but we’ve also got to acknowledge that what happens around kitchen tables is also work. This won’t mean fewer people with careers, it will mean more people with more options. It will mean a mother can close her computer in the middle of a pandemic to hold her children. A person with a chronic illness can keep their insurance even if their company closes. And, in some other place and time, my dad won’t have to get on that plane to help his family live after he dies.

Of course, my dad did get on that plane. And whatever the future holds can’t change this moment any more than it can change the past. My family is lucky, for now. My husband still has his job. Right now, he’s working on the back porch while the kids jump on the trampoline. I sit next to him and reach for his knee. His work is meaningful to him. He is strengthening something in the midst of all this decay. I am proud of him. But frankly, he has no other option right now. Whatever happens in the world outside our home or the worlds contained within it, those keys on his computer need to keep clicking. I listen to them and realize they are one of the most consistent sounds of my life.

The kids yell for me to climb onto the trampoline with them. I beg off, my hand still on my husband’s knee. I am suddenly tired, and for the first time today I have the time to wonder how long my throat has felt sore. Did it start last night? This morning? I paused for breath when I climbed the stairs with the laundry, didn’t I? I can’t remember and push the thought away. There is, after all, so much work to do.