Ady BarkanVerified account

Her name is Rachael Scarborough King. She is a professor of English Literature at the University of California, Santa Barbara. And she is Carl’s mother.

We started dating senior year of college. We had worked together at the campus rag, @ColumbiaSpec. Within weeks, I felt like we were already settled into a long-term relationship. We just fitted.

We spent 11 blissful years together, in Ohio, Oregon, Connecticut, New York, and California. She worked as a journalist while I got my JD. I worked as a lawyer while she got her PhD (in a rapid 5 years). Both our careers were going great.

In fall 2015, we celebrated 10 years together by getting married at the courthouse and having a two-day party with 20 friends. In May 2016, Carl was born. His first scream is still so vivid; I laughed and laughed, overjoyed with relief & love after months of low-intensity worry.

Life was perfect. Our home in Santa Barbara, our chubby newborn, our fulfilling & well-paid jobs, our loving friends & family. We were the happiest, luckiest people we knew. We said it to each other often. So grateful. And then, the morning after our 11th anniversary, disaster.

I’ll tell the story of my ALS diagnosis some other time. And I won’t talk about my misery and fear and rage and jealousy and self-pity in those first months here either. Because I want to focus on Rachael’s strength.

Rachael had been Carl’s primary caregiver for his first four months. I was supposed to take over (hat tip: good paternity leave) in Oct. & Nov., so she could write her book. But I was too depressed. Spending time with Carl heightened my sense of loss. So she kept caring for him.

I started doing more around New Year’s. Not 50-50. Maybe 60-40? But as the ALS progressed, I became less able. Dressing Carl became hard; then impossible. Carrying him became hard; after one fall with him in my arms, I stopped altogether. Then I couldn't pick him out of his crib.

My inability to care for Carl is the worst part of ALS. The vision that I won’t be able to teach him to write, play guitar, or box out; won’t teach him about Bayard & Cesar & Lyndon, Eleanor & Rosa & Dolores; won’t dry his tears when he’s down and out, when evening falls so hard.

I was going to be his best friend. We were going to laugh so hard, so loud, for so many decades. I was going to do more than 50% of the child care. Much more. We gave him Rachael’s last name because fuck the patriarchy. Yet here we are.

Today, Carl is cared for by great women teachers at his daycare. At home, Rachael does 90% of the care. Friends & family do 5%, and I do the final 5%. But even that’s getting hard – I can’t chase him, or keep him safe.

I can read, and make great faces, and tickle. But I am a shadow of the father I wanted to be. And I have so much farther to fall.

And, of course, now she’s caring for me too. 20 times a day, I ask her to bring me a glass of water or plug my phone in or hold my hand so I don’t fall.

Right now she’s sitting in the other room, waiting to help me take a shower. We’re staying with friends up north. We had to evacuate because of the wildfire smoke. It’s taking me a long time to write this because I’m typing with one hand.

She doesn’t complain. When other white moms whine about a minor inconvenience, she doesn’t tell them to get some perspective. She doesn’t make me feel like a burden. She focuses on the many joys we have, not the many joys we are losing.

Her strength has given me the emotional space to be depressed and scared and sad whenever I need or want to be. She has carried us all.

And she has done this all while being a superstar scholar. During this hard year, she finished her book: Writing to the World: Letters and the Origins of Modern Print Genres.

It's a brilliant exploration of how letters facilitated the rise of the novel, the newspaper, and the biography in the 18th century, and what that history teaches us about media and technology. Available on preorder now!

Speaking of genre conventions, is this thread way too long? It's my first one. So, look. I really love my wife. And I want you to know that. And appreciate her. And, women: appreciate yourselves. And, men: appreciate the women in your life.

Women take care of my son. My neurologist, my home visiting nurse, our home cleaners: women. This is America. Women do most of our care work, from cradle to grave.

It is the most intimate, difficult, important work there is. And for that privilege they get paid 79 cents on the male dollar. Black women and Latina women significantly less.

And when they’re done working for $, they come home to work for free. Among my hetero friends (nearly all self-described feminists), I know no couple that actually shares the load equally. Rachael and I were going to be different. I was going to be different. The best laid plans.

We’ve seen this year how economic & power disparities in Hollywood, Washington, the media, and academia allow men to harass & abuse women – even relatively privileged white women. What do you think is happening to the Black and Brown women who clean, cook, and care?

This tax bill would make things much worse. It would raise taxes on nurses so that hospital executives can pay less. Raise taxes on teachers and lower them on real estate developers. Eliminate health insurance, raise taxes on the working and middle classes, and enrich the 1%.

We should be going in the opposite direction. Universal free child care (that provides good jobs). Guaranteed humane paid family leave that lets parents cherish that first magical year. Medicare for all.

An America where women get equal pay for equal work. Where parents are celebrated and supported, not stretched to the breaking point. Where men wash the damn toilet bowl at least half the time.