Suddenly the health care system I relied on felt strained and shaky. Doctors and scientists at Columbia University, including George, did not know whether they would be able to continue their research or even find work. (Colombia was one of the first countries of the Trump administration. goals in its campaign against alleged anti-Semitism on campuses; in May, the university laid off one hundred and eighty researchers after cutting federal funding.) If George changed jobs, we didn't know if we would be able to get insurance now that I had a pre-existing condition. Bobby – famous vaccine skepticand I was particularly concerned that I would not be able to get mine again and would have to spend the rest of my life immunocompromised along with millions of cancer survivors, young children and the elderly. Bobby said, “There is no safe or effective vaccine.” Bobby probably doesn't remember the millions of people who were paralyzed or died from polio before the vaccine was available. My father, who grew up in New York in the forties and fifties, remembers. I recently asked him what it was like when he got the vaccine. He said it felt like freedom.
As I spent more and more of my life under the care of doctors, nurses, and researchers committed to improving the lives of others, I watched as Bobby committed nearly half a billion dollars to research into mRNA vaccines, a technology that could be used against some types of cancer; cut billions of funding from National Institutes of Healththe world's largest funder of medical research; and threatened to suspend a panel of medical experts tasked with recommending preventive cancer screenings. Hundreds of NIH 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 worried about the trials, which were my only chance at remission. Early on in my illness, when I had a postpartum hemorrhage, I was given a dose of misoprostol to stop the bleeding. This drug is part of medical abortionwhich Bobby insists is currently “under review” by the Food and Drug Administration. I freeze when I think about what would happen if this were not immediately available to me and the millions of other women who need it to save their lives or get the help they deserve.
My plan, if I hadn't gotten sick, was to write a book about the oceans – their destruction, but also the opportunities they offer. During treatment, I learned that one of my chemotherapy drugs, cytarabine, owes its existence to an oceanic animal: a sponge native to the Caribbean Sea. Tektitet crypt. This discovery was made by scientists at the University of California, Berkeley, who first synthesized the drug in 1959 and almost certainly relied on government funding, the same thing Bobby had already cut out.
I won’t write about cytarabine. I won't know if we harnessed the power of the oceans or let them boil and become a garbage dump. My son knows that I am a writer and write about our planet. Since I have been sick, I remind him a lot so that he knows that I am not just a sick person.
When I look at him, I try to fill my brain with memories. How many more times can I watch the video of him trying to say “Anna Karenina”? What about when I told him I didn't want any ice cream from the ice cream truck and he hugged me and 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, looked at me and said, “It’s so nice to meet you here.”
Then there's my daughter, her curly red hair like flames, her eyes squinting and her gap-toothed smile after a sip of seltzer water. She stomps around the house in bright yellow rubber boots, pretending to talk to my mother on the phone, with a string of faux pearls around her neck, no pants, giggling 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.”
Basically I try to live and be with them now. But being in the present is harder than it seems, so I let the memories come and go. So many of them are from my childhood that I feel like I'm watching me and my kids grow up at the same time. Sometimes I fool myself into thinking that I will remember this forever, that I will remember this when I die. Obviously I won't. But since I don’t know what death is, and there’s no one to tell me what will happen after it, I will continue to pretend. I'll keep trying to remember. ♦
Tatiana Schlossberg at her parents' house in New York.Photo by Thea Traff for The New Yorker.
