Мать описывает, как вирус привел к тяжелому неврологическому заболеванию у ее дочери и изменил их жизнь

The first time my friend Leucas visited us, it was a cold and dark January in Canada, but we made the most of it. Leucas learned the art of layering pants to defeat the chill; they taught my eight-year-old daughter, Rose, to ice-skate; and we ate butter tarts near the water. Nine months later, Leucas came back—but this visit was different. They flew from L.A. to Toronto with only a few hours’ notice, and during our long days together, we hardly spoke. Instead, Leucas spent the duration taking care of my one-year-old, Calvin, while I coordinated Rose’s medical care. It had started a few days earlier, with seizurelike movements—then, everything else changed. Rose’s eyes, usually bright, couldn’t focus on us. They were dilated and wild. Over the next few hours, she lost the ability to use the toilet, speak, walk, sleep, or eat. My husband, David, eventually moved with her into the basement, where she wailed for hours on end as she experienced new and agonizing neurological symptoms. We would later learn that the seemingly benign virus our family had caught a few weeks earlier had caused inflammation in a part of Rose’s brain called the basal ganglia. After a week of sleepless nights and three emergency room visits, she was diagnosed with PANS, an illness in which the immune system attacks the part of the brain that controls impulse, motor control, and emotional regulation. But when I called and asked Leucas to come and help, we didn’t yet have a diagnosis. All we knew was that Rose’s life was in danger, and that we needed to keep her safe while taking care of Calvin. Leucas arrived the same evening. Getting Rose the care she needs has been arduous; that’s typically the headline of any story I tell about the past year. But there has also been a parallel story, and that’s what this prolonged crisis has done to my friendships. I have always been a friend person. Every week in elementary school, I would have a Friday sleepover, two Saturday playdates, and some fourth engagement on Sunday. In high school, I spent evening hours flopped on my beanbag, feet resting on my yellow daybed, rolling calls on my tan cordless phone. I have tried to explain the intensity of these social bonds to my husband, a bookish introvert who has kept the same small group of friends for more than 30 years—the nicknames, late-night secrets, and meetings on the boardwalk; the shared clothes and intricately folded notes. While studying abroad at St. Andrews, I had a whole wall covered in posters cataloging the inside jokes I shared with my flatmates from England, France, Alaska, and D.C. On Thursdays we went out dancing and on Fridays we piled in bed, Robert Redford movies playing on someone’s laptop and sleeves of Tesco cookies split between us. I love meeting new people and I love the comfort of the friends who have known me for decades. I love the particular giddiness of an evening laughing over wine. I love the details of my friends’ lives. So why has it felt so hard to share the recent details of my own? Rose has now been profoundly sick for a year. She no longer attends school, barely leaves the house, and hasn’t seen a friend since September of 2025. For the first three months, she couldn’t even tolerate the sensation of our hands on her back. She is slowly regaining skills—learning to dress herself again, relearning to read—but it’s slow. My husband is on a government-funded leave for critically ill children. One morning this spring, I realized I had not left my neighborhood in six months. How can I explain how completely our lives have changed? On one hand, friends have saved me during this period. Leucas flew out. My sister came next. My friend Jane has DoorDashed our family more meals than I can count. My writing group sent food. Others sent money for ordering more meals. I have been the lucky recipient of loyal devotion from both newer and lifelong friends—people who keep checking in, no matter how dire my updates are. But even those relationships have been altered as we become a little less sure of what to say to one another. It feels like we’re shouting across the chasm of my family’s losses; the trials of their own lives become lost in all the darkness. And then there are those who pulled back. New friends who wanted to steer clear of drama. Older friends who stopped checking in after a couple of weeks. A few who continue to ask about everything except Rose. In my loneliness, I have sometimes wondered how much it matters that some of her symptoms are psychiatric, that her illness often results in pediatric suicide. Does this kind of bad luck feel contagious, as though it might somehow infect the people who used to recognize their own family lives and routines in mine? This isn’t an indictment of how people have failed me: I have failed my friends in countless ways over the past year. Before this crisis, I used to think about them often—analyzing recent developments in their jobs, relationships, and parents’ health. Now, I think about my own family almost exclusively. I forget birthdays. I don’t remember other people’s trips or illnesses or fights with their mom. While I know that many others are living with pain and loss and are doing hard things every day, I am so tired that there isn’t a centimeter left for the people outside my house. I have, however, found myself forming new, intense relationships with other parents of PANS kids, doctors who treat these kids, and the advocates who fight for them. PANS itself is cruel, but there is a tangle of injustice that magnifies the suffering: People wait years for an accurate diagnosis, insurance denies the most effective treatments, and the tens of thousands of impacted kids have only a few doctors they can see. The institutionally imposed lag between research and clinical care here is harming children, and once you have seen it, it’s impossible to look away. When I am not worrying about keeping my kids alive, I am writing, working on a podcast, speaking to advocacy organizations, and reading medical journals. It’s comforting to meet someone else who has witnessed this atrocity. What a gift to share the details without also having to articulate how very bad this all is. And then there’s a feeling that anyone in a crisis will recognize. Before, our family was generally orbiting the same sun as everyone else with young kids. New boots in the winter and a rush for the best camp spots in April. A pillowcase full of Halloween candy and tick checks. Now the year lacks structure. There is no delineation between summer and fall, a random Thursday and Thanksgiving. While our days blur, there’s a rigidity in me now. I know that not everyone can feel as strongly about fighting PANS as I do, but I still want them to. I have the zeal of a recent convert: Join me in this work, or I’ll see you around. Almost everything about me has changed this year, from how I see the world to how I see myself to, for the first time in 43 years, my relationship to friendship. May there be a day soon when I’m giggling with friends over a bottle of Sancerre and a picked-over plate of radishes and lemon bars. In part because I miss it—but also, because it will mean my daughter is finally okay.