A Life Interrupted: How Political Decisions Impact Personal Battles with Illness
A precarious healthcare landscape, coupled with shifting political priorities, has profoundly impacted the life of one woman battling illness, raising critical questions about access to care, research funding, and the future of medical advancement.
The fragility of the healthcare system became starkly apparent when, suddenly, the support network she relied upon felt strained and unstable. Doctors and scientists at Columbia University, including a colleague named George, faced uncertainty regarding the continuation of their research and even their employment. This instability stemmed from the Trump Administration’s targeting of universities over alleged antisemitism, resulting in the layoff of 180 researchers in May following federal funding cuts. The potential loss of George’s job raised immediate concerns about insurance coverage, particularly given the author’s preëxisting condition.
Adding to the anxiety was the stance of a prominent figure, referred to as “Bobby,” a vocal vaccine skeptic who has publicly stated, “There’s no vaccine that is safe and effective.” This position fueled fears about the ability to receive necessary vaccinations, potentially leaving the author permanently immunocompromised alongside millions of others – cancer survivors, children, and the elderly. A family member, recalling growing up in New York City during the 1940s and 50s, remembered receiving the polio vaccine and described the experience as “freedom,” a poignant reminder of the life-saving power of immunization.
The impact extended beyond personal health concerns. The author witnessed firsthand what she describes as cuts to vital research funding. Nearly half a billion dollars was diverted from mRNA vaccine research – a technology with potential applications in cancer treatment – and billions more were slashed from the National Institutes of Health (NIH), the world’s leading sponsor of medical research. These cuts led to the cancellation of hundreds of NIH grants and clinical trials, impacting thousands of patients and raising concerns about funding for critical research at institutions like Memorial Sloan Kettering for leukemia and bone-marrow research. The author worried specifically about the potential disruption to trials representing her “only shot at remission.”
The consequences of these policy decisions were acutely felt even in routine medical care. A life-saving drug, misoprostol, administered after a postpartum hemorrhage, is part of medication abortion access, which, at the urging of “Bobby,” is currently “under review” by the Food and Drug Administration. The author reflects on the terrifying prospect of that medication not being immediately available, a scenario faced by countless women.
.
Ironically, even the chemotherapy drug, cytarabine, used in her treatment has roots in scientific discovery fueled by government funding. The drug’s origins lie in a Caribbean sea sponge, Tectitethya crypta, studied by scientists at the University of California, Berkeley in 1959. This underscores the interconnectedness of basic research and life-saving treatments, and the potential consequences of diminishing support for scientific exploration.
The author acknowledges a shift in focus, recognizing she may no longer be able to pursue her original writing project about the oceans. “I won’t write about cytarabine,” she states, “I won’t find out if we were able to harness the power of the oceans, or if we let them boil and turn into a garbage dump.” Instead, her energy is consumed by the present, by creating memories with her children.
She finds solace in the small moments: watching videos of her son attempting to pronounce “Anna Karenina,” the comforting hug and affirmation of “I hear you, buddy” after declining ice cream, and her son’s innocent observation upon her return from the hospital: “It’s so nice to meet you in here.” Her daughter, a whirlwind of energy with “curly red hair like a flame,” fills the house with laughter, playing with her mother’s belongings and requesting James Brown’s “I Got the Feelin’ ” – a song she announces with a joyful “Baby, baby.”
These moments, she realizes, are fleeting. “Mostly, I try to live and be with them now,” she writes, “But being in the present is harder than it sounds, so I let the memories come and go.” She grapples with the inevitability of loss, acknowledging that she won’t remember everything, but clinging to the hope of preserving these precious moments, even if only in her imagination. “Sometimes I trick myself into thinking I’ll remember this forever, I’ll remember this when I’m dead,” she confesses. “Obviously, I won’t. 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.”
[Photograph of Tatiana Schlossberg at her parents’ home in New York City by Thea Traff for The New Yorker]
