Two Households, Both Alike In Indignity: An Interview With Anne Ursu

(I wrote this lying down. I sat astatine my aged table to constitute and it was a correction truthful I had to dishonesty down. Every clip I rewrote this aliases sent Anne questions I was lying down. I dictated immoderate of my questions. I moreover dictated immoderate of nan edits.)

My wife, nan writer Kelly Link, and I had opened a bookshop successful nan adjacent municipality complete successful October 2019. When nan pandemic started we pivoted to curbside pickup, section transportation and shipping, and online events. It was a grind but our landlord trim our rent successful half for a mates of months and each nan part-time booksellers kept it going pinch us, taking turns to beryllium successful nan store.

Despite being up-to-date pinch vaccinations and ever wearing a mask, I came down pinch Long Covid successful December 2021. I’d publication truthful overmuch astir Covid that betwixt wanting to debar it myself and wanting to make judge our kid, who was calved astatine 24 weeks backmost successful 2009, would beryllium safe I was really careful.

Long Covid diminished maine truthful overmuch I had to put our twenty-year-old mini press connected clasp and measurement distant from nan indie DRM-free ebookstore I ran pinch a friend. I tried to spell into nan bookshop each week but astatine first moreover half an hr would time off maine worn retired for nan adjacent mates of days.

In August 2024 our 15-year-old, Jade, went to a section four-week summertime camp. They wore a mask, ate outside, and utilized a regular nasal spray. On nan past time their counsellor called me: Jade had tested affirmative for Covid. (No 1 knows if location a familial constituent to Long Covid but nary different members of my extended family person travel down pinch it.) In November it became evident Jade was suffering from Long Covid. As I write, they are adjacent bedbound.

Back successful January of this year, Kelly posted connected Bluesky that she now lived pinch 2 group pinch Long Covid and Anne Ursu reached retired to walk on perchance useful pediatric Long Covid accusation arsenic her teenage son, Dash, had been suffering from it.

I knew Anne’s sanction and books and erstwhile I looked up her latest mediate people novel, Not Quite a Ghost, and saw that it was astir an eleven-year-old, Violet, who comes down pinch a post-viral unwellness and location was a shade inspired by Charlotte Perkins Gilman’s communicative “The Yellow Wallpaper” I knew it was for me. As I publication nan caller and thought astir nan parallels betwixt Anne’s family and ours, I realized I’d for illustration to question and reply her. The question and reply took spot complete a mates of weeks of emails arsenic I very slow put questions to Anne and she quickly answered them.

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Gavin: You person acquisition pinch CFS. Can you show america astir that and really it informed nan book?

Anne: When I was a elder successful precocious school, I came down pinch a very unusual illness. I was truthful lightheaded that I often couldn’t guidelines up, and I was wholly wrecked from exhaustion. I can’t moreover retrieve what nan expert said, isolated from that he didn’t person immoderate answers. It went distant aft astir 3 weeks, but successful assemblage it would reappear present and there, and past walk again. And past inferior twelvemonth I started having issues pinch my brain; I couldn’t travel lectures anymore, and I couldn’t return notes. I sewage an ADHD diagnosis, but nan psychiatrist said that she didn’t deliberation that’s really what I had. Meanwhile, I was conscionable losing power and having each of these different unusual symptoms, until I fundamentally collapsed. I often couldn’t locomotion without a cane, and I couldn’t support way of my ain thoughts. That’s erstwhile I sewage a CFS diagnosis–as good arsenic 1 of orthostatic intolerance, which explained nan lightheadedness issues. I gradually sewage better, but complete nan adjacent mates of decades kept having these crashes that would past for months, successful summation to nan orthostatic issues that could beryllium really disabling.

And its intolerable to get immoderate help; truthful galore doctors deliberation CFS patients are either malingering aliases being hysterical, nan prevailing curen astatine nan clip was actively harmful, and nan uncommon expert that believes what you person is existent still has nary thought what to do. It’s 30 years since I first sewage diagnosed, and we don’t cognize overmuch much astir CFS than we did backmost then. Long COVID investigation has helped, but if group had bothered trying to fig retired CFS astatine immoderate point, possibly we’d cognize really to woody pinch Long COVID.

Gavin: Violet’s unwellness is purposefully unspecified but will beryllium recognizable to anyone acquainted pinch Long Covid, ME/CFS, and different station viral conditions. What are immoderate of nan things you wanted to see astir these illnesses?

Anne: This was a challenging facet of nan book for me. Because she’s astatine nan opening of her illness, she conscionable wouldn’t beryllium getting a diagnosis. And—as I’ve been told by galore a doctor—Violet’s symptoms look rather “vague.” One of nan curses of this unwellness is that location are simply nary capable words to picture what’s happening, and truthful we’re near pinch inadequate words that diminish nan severity of nan experience; everyone has fatigue, right? So I tried very difficult to show really these symptoms consciousness though honestly penning those parts were very difficult. I didn’t want to put myself successful those feelings again, and I’d honestly blocked a batch of it out.

Also, you genuinely cannot abstracted nan individual acquisition of having this illness from nan societal acquisition of it. ME/CFS and different postviral illnesses simply don’t fresh into societal narratives astir really sickness works, and group get existent uncomfortable erstwhile thing doesn’t fresh into their narratives. Illnesses person definable symptoms and beingness signs, they tin beryllium tested for and treated (or astatine slightest managed). The thought that you could conscionable go wholly abnormal retired of nan bluish pinch thing nary 1 understands aliases tin dainty is simply a truth unpleasant for group to grapple with. And for galore successful nan aesculapian profession, it’s easier to blasted nan diligent than admit location mightiness beryllium things beyond their knowledge and abilities. For nan patient, this intends dismissal and denial. For Violet and her mother, they expect to get aesculapian help—that’s what doctors are expected to do, right? Help?—but alternatively Violet is treated arsenic if she’s malingering aliases having psychiatric issues. I would conjecture astir CFS patients person had this experience. And galore person ne'er recovered anyone who moreover acknowledges their illness is real.

Gavin: Our 16-year-old came down pinch Long Covid past October and now they are a shadiness of their erstwhile self. Their superior expert has been awesome and we’ve taken them to Children’s but nan main point correct now seems to beryllium to get them to rest, eat, and slumber and do arsenic small arsenic possible—which is rather difficult though they are getting utilized to it.

Your teenage son, Dash, has gone done thing similar. Was it diagnosed? Did his acquisition reflector yours? Do you deliberation nan mean expert is amended informed connected post-viral conditions now than a procreation ago?

Anne: My boy sewage COVID successful August, and conscionable did not recover. After nan first week aliases so, we expected him to commencement emotion little tired, but he ne'er did. Then, different symptoms started appearing—brain fog, lightheadedness, headaches. We were very very fortunate that his pediatrician was really well-informed astir Long COVID, and that we were capable to get him into personification astatine Mayo Clinic. But moreover pinch awesome aesculapian support; it’s truthful hard. The Long COVID treatments that immoderate doctors are trying haven’t been tested connected pediatric patients. Through immoderate operation of a booster, curen for orthostatic hypotension, and sheer luck he was capable to retrieve capable to spell backmost to schoolhouse for portion of nan day, but he’s still not backmost to normal.

I’ve heard capable stories from Long COVID patients to cognize really fortunate we are that his doctors were truthful informed. People still study encountering disbelief and dismissal. My conjecture is that nan supra mean expert is simply a batch amended informed connected post-viral conditions. That said, nan truth that ME/CFS often is simply a postviral information isn’t wide known aliases accepted. I person to opportunity that small has improved successful nan 3 decades since I first sewage sick. There haven’t been immoderate awesome advances successful knowing aliases treatment, it’s nan aforesaid fistful of doctors really trying to dainty nan disease, and patients are encountering nan aforesaid ignorance, skepticism, and hostility. The champion astir patients tin dream for is uncovering a expert who simply believes they are ill. It’s a disgrace.

Gavin: What drew you to this story? How did each nan abstracted parts—chronic illness, moving house, losing friends, not to mention a ghost—come together?

Anne: I’d ever wanted to constitute astir this experience, knowing these kinds of illnesses impact kids, too. But I couldn’t fig retired how; I constitute fantasy, and imagination stories mostly require their protagonists to beryllium capable to do things. It wasn’t until I started reasoning much astir scary arsenic a genre that I recovered my measurement in; scary is astir unusual and mysterious things happening to you retired of nan bluish that you person nary power over.

I went looking for nan correct monster for nan communicative and ran crossed an aged article astir classical scary books, and it listed Charlotte Perkins Gilman’s The Yellow Wallpaper, a communicative astir a female who has immoderate benignant of postpartum intelligence wellness rumor and is confined to nan attic chamber of a location by her expert husband. She’s not allowed do anything, moreover read, truthful she spends her days looking astatine nan horrific wallpaper successful her room, and yet she starts reasoning there’s a female trapped inside. It was nan cleanable communicative to get inspiration from—though Gilman’s characteristic hallucinates nan women successful nan wall, I wanted to constitute a existent ghost. A shade story, too, useful very good for a characteristic who is stuck successful a room. And connected a thematic level, if you’re haunted by a ghost, nary 1 will judge you, an acquisition all-too-familiar for those pinch postviral illnesses.

I wanted Violet to person a batch going connected successful her life, because each nan doctors would instantly deliberation that this was a psychological consequence to nan upheaval. But of course, group tin person a batch of upheaval successful their lives, and besides beryllium sick! The communicative required a move into a caller house, but starting sixth people and shifting friendships felt for illustration very existent things Violet could beryllium dealing pinch erstwhile she falls ill. And that’s nan point astir postviral illness; you’re conscionable retired surviving your ordinary-person life, and past nan unwellness hits you and that full life gets taken away.

Gavin: Violet has to spell done truthful overmuch condolences from nan mundane nonaccomplishment of leaving nan location she grew up successful to losing her puerility friends and past grieving nan nonaccomplishment of her beingness and intelligence faculties. What kinds of support did you spot a diligent for illustration her receiving?

Anne: You know, I deliberation condolences is thing that’s inherent to childhood. Everything is ever changing and shifting, and it’s each truthful confusing, and we conscionable expect kids to spell on pinch it and beryllium okay. Violet is fortunate to person a batch of affirmative relationships successful her life, from family to increasing friendships, but successful nan extremity she besides demonstrates nan benignant of resilience that comes from being a kid successful nan world and trying to fig everything out, time by day.

Of course, she besides gets a cat!

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Anne Ursu is nan writer of acclaimed novels Not Quite a Ghost, The Troubled Girls of Dragomir Academy, The Lost Girl, Breadcrumbs, and The Real Boy, among others. Her activity has been selected arsenic a National Book Award nominee, a Kirkus Prize finalist, and arsenic a champion book of nan twelvemonth by Parents Magazine, NPR, Bookshop.org, and Publishers Weekly. She lives successful Minneapolis pinch her family and an unruly herd of cats.