Battle with my blood

Suddenly, the health care system I relied on was strained and shaken. Doctors and scientists at Columbia University, including George, did not know whether they could continue their research, or even get jobs. (Columbia was one of the Trump administration’s first targets in its crackdown on alleged anti-Semitism on campus; in May, the university laid off 180 scholars after cutting federal funding.) If George changed jobs, we didn’t know if we would be able to get insurance, since I had a pre-existing condition. Bobby is a known vaccine skeptic, and I was particularly concerned that I would never be able to get my vaccine again, leaving me to spend the rest of my life immunocompromised, along with millions of cancer survivors, young children, and the elderly. “There is no safe and effective vaccine,” Bobby said. Bobby probably doesn’t remember the millions of people who were paralyzed or killed by polio before the vaccine was available. My father, who grew up in New York City in the 1940s and 1950s, remembers it. I recently asked him how he felt when he got the vaccine. He said he felt free.

As I spent more and more of my life under the care of doctors, nurses, and researchers striving to improve the lives of others, I watched Bobby carve out nearly half a billion dollars for research into mRNA vaccines, technology that could be used against some cancers; cutting billions in funding from the National Institutes of Health, the world’s largest sponsor of medical research; She threatened to dismiss the committee of medical experts charged with recommending preventive cancer screenings. Hundreds of National Institutes of Health grants and clinical trials were canceled, affecting thousands of patients. I was concerned about funding for leukemia and bone marrow research at Memorial Sloan Kettering. I was anxious about the experiences that were my only chance for healing. Early in my illness, when I had postpartum hemorrhage, I was given a dose of misoprostol to help stop the bleeding. This medication is part of a medical abortion, which, at Bobby’s request, is currently “under review” by the Food and Drug Administration. I freeze when I think about what would have happened if he had not been immediately available to me and the millions of other women who need him to save their lives or get the care they deserve.

My plan, had I not gotten sick, was to write a book about the oceans: their destruction, but also the possibilities they offer. During treatment, I learned that one of the chemotherapy drugs, cytarabine, owes its existence to an ocean animal: a sponge that lives in the Caribbean Sea, Tektithya crypto. The discovery was made by scientists at the University of California, Berkeley, who first synthesized the drug in 1959, and who almost certainly relied on government funding, the same thing that Bobby had already cut.

I will not write about cytarabine. I won’t know if we’ll be able to harness the power of the oceans, or if we’ll let them boil over and turn into a garbage dump. My son knows that I am a writer and that I write about our planet. Since I got sick, I remind him often, so he knows I wasn’t just a sick person.

When I look at him, I try to fill my mind with memories. How many times can I watch a video of him trying to say “Anna Karenina”? What when I told him I didn’t want ice cream from the ice cream truck, and he hugged me, patted me on the back, and said, “I hear you, buddy, I hear you”? I think about the first time I came home from the hospital. He walked into my bathroom and looked at me and said, “It’s nice to meet you here.”

Then there’s my daughter, her flame-red hair curly, closing her eyes and grinning after taking a sip of soda. She walks around the house in her bright yellow rain boots, pretending to talk on my mother’s phone, a fake pearl necklace around her neck, no pants, laughing and running away from anyone who tries to catch her. She asks us to play James Brown’s “I Got the Feelin'” by picking up a portable speaker and saying, “Baby, baby.”

Mostly, I try to live and be with them now. But being in the present is harder than it seems, so I let memories come and go. So many of them are from my childhood that I feel as if I’m watching myself and my children grow up at the same time. Sometimes I fool myself into thinking that I will remember this forever, that I will remember it when I die. Obviously I won’t do that. But since I don’t know what death is like and there’s no one to tell me what comes after it, I’ll keep pretending. I will keep trying to remember. ♦

Tatiana Schlossberg at her parents’ home in New York City.Photography by Thea Taff for The New Yorker